Asperger's Syndrome
What Keeps You Up At Night?
03/03/13 16:51
I had the privilege of sitting on the panel for the Association for Behavior Analysis International (ABAI) conference in Oregon in January. The last day of the conference was devoted to parents. Parents on the panel were asked to address an important topic.
Question: What Keeps You Up At Night?
Since I’ve been thinking about this rich topic for a long time, I thought I’d share the thoughts I presented at the ABAI conference, in their entirety. The presentation is posted below.
____________________________
What keeps me up at night? That’s a very rich topic, and you’re looking at an insomniac! If I could sum up in a phrase, it would have to this: JUNK SCIENCE.
Why should parents care about junk science?
The concern is that Junk Science will win the autism treatment war and successfully block effective treatment for children with autism. This would have ramifications for children not yet diagnosed, just diagnosed, or already in effective treatment programs.
In other words, Intensive Behavioral Treatment based on the principles of Applied Behavior Analysis, is going to be replaced by ineffective programs that will be served up by the 1000’s of treatment purveyors who are masquerading as legitimate, effective treatment professionals.
Why do I see things in such a negative light? Here are some very dangerous trends:
Junk Science is becoming more sophisticated
When my child was diagnosed over twenty years ago, there was no shortage of quackery. But when a parent asked for scientific studies, if the quacks were organized, they’d supply newspaper articles or testimonials, but no studies in peer-reviewed journals. Twenty years later, treatment quackery is published in poor-quality journals, some of which are written by academicians. In addition, there are now books full of uncontrolled case studies, which are no better than testimonials but come with a patina of legitimacy.
Convergence
The second trend I see is what I’ll refer to as convergence. In this case, a number of treatments that have never had any scientific support are combined and offered in an eclectic program. This often masks the fact that there is no data that demonstrates treatment efficacy, and thereby fools parents of newly diagnosed children into evaluating the treatment program as worthwhile.
An even more problematic issue are the treatments with no decent data outcomes that sprinkle a little behavioral treatment into their program and then compare their program to what is available in the community, which is generally general special education, which is not typically optimal for children with autism. So now substandard treatment competes with glorified babysitting. In this false contest of autism treatment, the treatment with a modicum of ABA that is being tested will outcompete the control.
Although it may be politically incorrect to say, this is the big problem with the Early Start Denver Model. In 1987 – 1998, the Denver Model (originally cased the “playschool”) did not present itself as a behavioral treatment program for autism. Back then, the “Playschool” was primarily play therapy. The Early Start Denver Model now incorporates ABA. They published a 2010 study where they took:
“Forty-eight children diagnosed with ASD between 18 and 30 months of age were randomly assigned to 1 of 2 groups: (1) ESDM intervention, which is based on developmental and applied behavioral analytic principles and delivered by trained therapists and parents for 2 years; or (2) referral to community providers for intervention commonly available in the community.”
Now these researchers created results showing how great their model is as compared to glorified babysitting. Why should we care? We should care for two reasons:
First, this wastes our children’s valuable time with treatments that are diluted at best and we know that diluted treatment doesn’t create best outcomes. Over twenty-five years ago, Lovaas (1987) demonstrated sub-optimal outcomes when he provided highly quality behavioral treatment to a control group for 10 hours a week.
Based on their research, the Early Start Denver interventionists seem to be overly concerned with saving money on the backs of our kids. They seem to be interested in a) less intensity that costs less, b) parents as therapists aka free labor, and c) long distance training of therapists which costs less. The unifying theme appears to be “let’s save money”, not “what works best” for the kids.
Of course, I have no issue with providing quality treatment more efficiently; however, before trying to save money, researchers in other fields first attempt to create the best treatment for the malady they are targeting. To illustrate, cancer researchers aren’t thinking about saving money when they develop innovative treatments for cancer. Why are children afflicted with autism somehow deemed to be children of a lesser god, where economizing on treatment is more important than effectiveness?
Academic literature reviews
The 3rd trend that keeps me awake at night are the growing number of so-called academic literature reviews on autism treatments. Governments rely on these reviews to make decisions about whether to fund intensive behavioral treatment. Many of these so-called “independent” reviews are generally created by health care economists whose job is, essentially, to save gov’ts money by only funding what they, in their gate keeper capacity, deem to be science-based treatments. That sounds great until you understand that this group of health policy analysts is either:
In the back pocket of gov’ts with government owned medicine such as Canada, the U.K., or Denmark, or
Honest in their mission but do not understand the politics of the autism wars and are influenced by their international colleagues who may have a darker agenda, like the British Columbia Office of Health Technology’s shameful work against kids with autism in Canada’s landmark Auton case for publicly funded autism treatment.
Due to the highly politicized nature of this area, the consumer should not put any trust in any literature reviews on autism treatment. Before believing any recommendations, the informed consumer should go directly to the source article. Unfortunately, most people trust these health care economists who are in the business of rationing treatment. It’s analogous to having the fox guarding the chicken coop.
In the U.S., parents have been wildly successful at lobbying and litigating against health insurance companies. The autism lobby has also been very successful in getting autism mandates passed in the majority of states that require autism treatment to be covered by the insurance companies in that state. However, these academic literature reviews are dangerous because they are calling intensive behavioral treatment “experimental” which is the “get out of paying for it” card used by health insurance companies, whether private or government owned. This this fraudulent health policy trend is going to block our children from access to intensive behavioral treatment.
That’s what keeps me awake at night.
*This talk was originally presented at the Association for Behavior Analysis International (ABAI) conference in Oregon, Sunday, January 27th, 2013.
Monte Python’s Cheese Shop: Canadian Edition
04/12/12 15:02
It’s another day, with another story published about Canadian children with autism being denied therapy for their condition. In the land of a vaunted health-care system which is held up as the defining characteristic of Canadian nationhood, in the largest, most prosperous province of Ontario, children with autism are:
• excluded from the health care system and
• can wait on a social services waiting list for early intervention services for four to six years!
No, that’s not a typo.
When a child is fortunate enough to be diagnosed early at two years of age, which is almost a miracle in itself in a thoroughly dysfunctional system, the government offers the child easy access to a waiting list for treatment, with full knowledge that the child will age out before his turn comes up. We all know it is critical to start at two years of age when the child’s development window is great, but apparently that is does not keep Ontario bureaucrats up at night.
Monty Python’s parody on the dysfunctional British society of the 1970s could have been written for children with autism in Canada. Unfortunately, children with autism need quality therapy, and they need it when they are diagnosed!
• excluded from the health care system and
• can wait on a social services waiting list for early intervention services for four to six years!
No, that’s not a typo.
When a child is fortunate enough to be diagnosed early at two years of age, which is almost a miracle in itself in a thoroughly dysfunctional system, the government offers the child easy access to a waiting list for treatment, with full knowledge that the child will age out before his turn comes up. We all know it is critical to start at two years of age when the child’s development window is great, but apparently that is does not keep Ontario bureaucrats up at night.
Monty Python’s parody on the dysfunctional British society of the 1970s could have been written for children with autism in Canada. Unfortunately, children with autism need quality therapy, and they need it when they are diagnosed!
Religiosity and Autism: Studying the Wrong Question
27/11/12 18:49
A review of Why Religion is Natural and Science Is Not published in Psychology Today reported a lack of ability of those with autism to believe in God. Researchers have suspected:
“that religious belief and understanding is obstructed by ASD and that this results from impaired theory of mind capacities.”
New studies confirm this finding. My instant reaction was big surprise, and tell me something I don’t know! It’s not a big surprise that abstract thinking is typically difficult for people with autism. It may be hard to believe for some, but belief in God is not a prerequisite to be part of a faith-based community.
The article seems to make a connection between belief in a higher being and participation in religious life. Once again, these researchers are asking the wrong question.
Here’s why.
It is irrelevant to most families of children with autism whether their child with autism is a believer or not insofar as theory of mind issues make it a near impossibility. What is important, however, is that the faith-based community with which they are affiliated wholeheartedly embraces their child as a member! I suggest that the question that needs to be studied is which faith-based communities are most likely to integrate people with special needs into the broader community, irrespective of their ability to believe in a higher being. The biggest problem that families of children with autism face is not whether their children have faith, but rather, whether the community will accept their family now that they have a child afflicted with autism. Moreover, although children with autism may be tolerated, how will faith-based communities deal with these children when they reach adulthood? It’s one thing to integrate disabled children; it is quite another matter to embrace adults with autism in a faith-based community without the knee-jerk instinct to segregate.
The correct question to study is whether typically developing adults have the capacity in a faith-based organization to embrace people with special needs rather than just give lip service to it.
“that religious belief and understanding is obstructed by ASD and that this results from impaired theory of mind capacities.”
New studies confirm this finding. My instant reaction was big surprise, and tell me something I don’t know! It’s not a big surprise that abstract thinking is typically difficult for people with autism. It may be hard to believe for some, but belief in God is not a prerequisite to be part of a faith-based community.
The article seems to make a connection between belief in a higher being and participation in religious life. Once again, these researchers are asking the wrong question.
Here’s why.
It is irrelevant to most families of children with autism whether their child with autism is a believer or not insofar as theory of mind issues make it a near impossibility. What is important, however, is that the faith-based community with which they are affiliated wholeheartedly embraces their child as a member! I suggest that the question that needs to be studied is which faith-based communities are most likely to integrate people with special needs into the broader community, irrespective of their ability to believe in a higher being. The biggest problem that families of children with autism face is not whether their children have faith, but rather, whether the community will accept their family now that they have a child afflicted with autism. Moreover, although children with autism may be tolerated, how will faith-based communities deal with these children when they reach adulthood? It’s one thing to integrate disabled children; it is quite another matter to embrace adults with autism in a faith-based community without the knee-jerk instinct to segregate.
The correct question to study is whether typically developing adults have the capacity in a faith-based organization to embrace people with special needs rather than just give lip service to it.
When A Government Report Supports a Lie
09/11/12 20:42
I just finished reading Interventions for Adolescents and Young Adults with Autism Spectrum Disorders which is a government report that claims there is little scientific evidence supporting current autism treatments for teens with autism. The lead researcher is an Assistant Professor of Pediatrics and Special Education. The claim her study makes can be misused in very sophisticated ways to ration treatment for children once they reach the threshold of six years of age. The evil folks can do mischief because there is a grain of truth in a mountain of lies when it comes to research into autism treatment.
Researchers may have the best of intentions for people with autism; however, they help the “dark side” immeasurably when they do not provide context for their conclusions.
What’s the truth?
There are thousands of peer reviewed journal articles written in the field of Applied Behavior Analysis (ABA) in which adults with autism have been treated using a variety of techniques developed in this field. The data reported on adults generally uses a design which painstakingly measures behavior before, during and after the treatment of an individual with autism. Indeed, much of the science developed for comprehensive, early, intensive behavioral intervention is based on the foundations of this single-subject research in ABA. In the Interventions for Adolescents and Young Adults with Autism Spectrum Disorders report mentioned above, all single-subject design (SSD) studies were rejected because of the inclusion criteria that these researchers used. Here are their criteria:
Review Methods: We included studies published in English from January 1980 to December
2011. We excluded intervention studies with fewer than 20 adolescents or young adults with
ASD or fewer than 20 parents or family members of such individuals and studies lacking
relevance to ASD treatment.
Even if all the SSD studies are excluded, there are dozens of published between-subject, peer-reviewed journal articles presenting irrefutable evidence that intensive, behavioral treatment is best practices when it comes to autism treatment. However, none of these studies were included because, once again, this is a report on adolescents and young adults, not on children. In fact, the highest quality studies in the field of autism treatment were conducted on young children. Another hurdle that these studies must overcome regards number of participants per study. The inclusion criteria of these researchers creates the standard of at least twenty adolescents or young adults per study. This criterion acts to exclude most studies in the field because they are conducted with fewer participants.
Did Taylor and her research team search for studies on intensive behavioral interventions in adolescents?
Yes, they did. Here’s their statement:
Intensive Behavioral Interventions: Comprehensive intensive behavioral interventions that focus simultaneously on multiple target areas are quite common for preschool children with ASD (e.g., University of California, Los Angeles/Lovaas model and early intensive behavioral intervention variants, Early Start Denver model, parent training paradigms). Studies that use behavioral approaches in an intensive and comprehensive fashion are uncommon during adolescence and young adulthood, although some programs for older individuals with ASD (not included in this review) may use elements of comprehensive approaches (emphasis added).
In short, they couldn’t find studies using comprehensive intensive behavioral interventions on adolescents but they found plenty on children.
At this point there are thousands of children who continue to benefit from high fidelity Intensive Behavioral Treatment (IBT) into adolescence and adulthood. Children with autism benefitting from intensive, behavioral treatment do not somehow, suddenly cease to benefit due to age; rather, the problem, in my view, is that researchers typically do not follow these children into adolescence to demonstrate the continued effectiveness of intensive, behavioral treatment in large enough numbers to be included in the criteria of the Interventions for Adolescents and Young Adults with Autism Spectrum Disorders report.
Why is there a shortage of high-quality IBT studies with adolescents?
In a word: Ethics. In order to have a high quality studies, researchers need:
1) random-assignment to groups (which means one group of teens do not receive treatment).
2) longitudinal studies to see if gains are maintained.
Ethically, no child with autism should be denied effective treatment, particularly not into their teens! Therefore, based on the criteria that this report uses to define high quality studies, investigators studying intensive behavioral treatment will have a very difficult time meeting these criteria. Researchers, and those who are forced to fund treatment, will arrive at the erroneous, though possibly convenient, conclusion that IBT does not work for teens with autism. In short, our success with young children will lead to our failure with older children unless researchers find an ethical way to measure improvement with adolescents and young adults. That is an issue that must be addressed because if we cannot prove efficacy with a treatment that we know is successful, then we will relegate a generation of children with autism to a life of institutionalization and misery rather than freedom and dignity.
Researchers may have the best of intentions for people with autism; however, they help the “dark side” immeasurably when they do not provide context for their conclusions.
What’s the truth?
There are thousands of peer reviewed journal articles written in the field of Applied Behavior Analysis (ABA) in which adults with autism have been treated using a variety of techniques developed in this field. The data reported on adults generally uses a design which painstakingly measures behavior before, during and after the treatment of an individual with autism. Indeed, much of the science developed for comprehensive, early, intensive behavioral intervention is based on the foundations of this single-subject research in ABA. In the Interventions for Adolescents and Young Adults with Autism Spectrum Disorders report mentioned above, all single-subject design (SSD) studies were rejected because of the inclusion criteria that these researchers used. Here are their criteria:
Review Methods: We included studies published in English from January 1980 to December
2011. We excluded intervention studies with fewer than 20 adolescents or young adults with
ASD or fewer than 20 parents or family members of such individuals and studies lacking
relevance to ASD treatment.
Even if all the SSD studies are excluded, there are dozens of published between-subject, peer-reviewed journal articles presenting irrefutable evidence that intensive, behavioral treatment is best practices when it comes to autism treatment. However, none of these studies were included because, once again, this is a report on adolescents and young adults, not on children. In fact, the highest quality studies in the field of autism treatment were conducted on young children. Another hurdle that these studies must overcome regards number of participants per study. The inclusion criteria of these researchers creates the standard of at least twenty adolescents or young adults per study. This criterion acts to exclude most studies in the field because they are conducted with fewer participants.
Did Taylor and her research team search for studies on intensive behavioral interventions in adolescents?
Yes, they did. Here’s their statement:
Intensive Behavioral Interventions: Comprehensive intensive behavioral interventions that focus simultaneously on multiple target areas are quite common for preschool children with ASD (e.g., University of California, Los Angeles/Lovaas model and early intensive behavioral intervention variants, Early Start Denver model, parent training paradigms). Studies that use behavioral approaches in an intensive and comprehensive fashion are uncommon during adolescence and young adulthood, although some programs for older individuals with ASD (not included in this review) may use elements of comprehensive approaches (emphasis added).
In short, they couldn’t find studies using comprehensive intensive behavioral interventions on adolescents but they found plenty on children.
At this point there are thousands of children who continue to benefit from high fidelity Intensive Behavioral Treatment (IBT) into adolescence and adulthood. Children with autism benefitting from intensive, behavioral treatment do not somehow, suddenly cease to benefit due to age; rather, the problem, in my view, is that researchers typically do not follow these children into adolescence to demonstrate the continued effectiveness of intensive, behavioral treatment in large enough numbers to be included in the criteria of the Interventions for Adolescents and Young Adults with Autism Spectrum Disorders report.
Why is there a shortage of high-quality IBT studies with adolescents?
In a word: Ethics. In order to have a high quality studies, researchers need:
1) random-assignment to groups (which means one group of teens do not receive treatment).
2) longitudinal studies to see if gains are maintained.
Ethically, no child with autism should be denied effective treatment, particularly not into their teens! Therefore, based on the criteria that this report uses to define high quality studies, investigators studying intensive behavioral treatment will have a very difficult time meeting these criteria. Researchers, and those who are forced to fund treatment, will arrive at the erroneous, though possibly convenient, conclusion that IBT does not work for teens with autism. In short, our success with young children will lead to our failure with older children unless researchers find an ethical way to measure improvement with adolescents and young adults. That is an issue that must be addressed because if we cannot prove efficacy with a treatment that we know is successful, then we will relegate a generation of children with autism to a life of institutionalization and misery rather than freedom and dignity.
Why the Canadian Government Can’t Run a Hot Dog Stand at a Baseball Game!
01/11/12 09:38
The Canadian Government made an announcement today (November 8th) that is purportedly significant. On closer inspection, I don’t see anything about which to get excited.
After a bunch of lawsuits, a public relations embarrassment that lead to the creation of a national website in the early 2000s, finally with the help of a turncoat MP who sold out the entire autism community while his son received science-based treatment, the Canadian government has announced the creation of a academic chair in autism. What is the expertise of the person who is going to fill the chair? Is it someone who is on the cutting edge of treatment research? Is it a researcher who is pushing the envelope when it comes to adding to the body of knowledge in the one area that has the most data, applied behavior analysis? No.
The person whose expertise is supposedly promising that it merits an academic chair is Jonathan Weiss, Ph.D, an assistant professor at York University. The website indicates the following as areas of specialty for Weiss:
Why should we be surprised? This chair is supported by The Canadian Institutes of Health Research (CIHR). This is the Government of Canada's health research investment agency and the same folks who fought against families in the landmark Auton Case at the Supreme Court of Canada. The CIHR claims that it’s mission is to “create new scientific knowledge and to enable its translation into improved health, more effective health services and products, and a strengthened Canadian health care system.”
In fact, based on this choice for this academic Chair, one could argue that the CIHR’s true mission appears to be to make sure that academics in Canada don’t actually come up with innovative treatments because then the government would have to pay for them. Instead, they agree to have researchers who are not going to be innovative for children who really need it, but rather, study us, the parents, because that’s far easier.
After a bunch of lawsuits, a public relations embarrassment that lead to the creation of a national website in the early 2000s, finally with the help of a turncoat MP who sold out the entire autism community while his son received science-based treatment, the Canadian government has announced the creation of a academic chair in autism. What is the expertise of the person who is going to fill the chair? Is it someone who is on the cutting edge of treatment research? Is it a researcher who is pushing the envelope when it comes to adding to the body of knowledge in the one area that has the most data, applied behavior analysis? No.
The person whose expertise is supposedly promising that it merits an academic chair is Jonathan Weiss, Ph.D, an assistant professor at York University. The website indicates the following as areas of specialty for Weiss:
- Families in distress,
- Asperger's and "cognitive therapy"
- How to teach graduate students this area of expertise,
- Caregiver's perspectives when failure has occurred and the kid winds up in the hospital.
Why should we be surprised? This chair is supported by The Canadian Institutes of Health Research (CIHR). This is the Government of Canada's health research investment agency and the same folks who fought against families in the landmark Auton Case at the Supreme Court of Canada. The CIHR claims that it’s mission is to “create new scientific knowledge and to enable its translation into improved health, more effective health services and products, and a strengthened Canadian health care system.”
In fact, based on this choice for this academic Chair, one could argue that the CIHR’s true mission appears to be to make sure that academics in Canada don’t actually come up with innovative treatments because then the government would have to pay for them. Instead, they agree to have researchers who are not going to be innovative for children who really need it, but rather, study us, the parents, because that’s far easier.
Autism & Wandering: Common Sense Solutions
15/10/12 12:13
Fears about children with autism wandering off have kept many a parent awake at night. When you have a child who wanders, or in some cases i
The issue that keeps almost all of us awake is when our child is in the care of the school. Unfortunately, most children with autism in typical classrooms do not have locked, fenced school yards and enough supervision to keep these integrated children safe. The schools are very quick to defend their purportedly safe environments even when a parent sees all the gaping holes in security around the school. If the parent gets too pushy, the school bureaucracy often defends their lackadaisical stance and becomes aggressive with parents, possibly invoking the nuclear option by saying: “if this school is not secure enough for your little Johnny, then perhaps we need to reevaluate whether your child should be integrated.” Since so many parents are fighting for mainstreaming, this ends the discussion immediately and is one of the major motivations to get “lawyered up.” Some parents just give up and accept segregation due to the safety concerns.
Since the parent cannot rely on the school to protect the physical safety or their child, the next fight is to require one-on-one supervision in the school yard. The school then typically deploys the “buddy” system where they get older children to “supervise” the autistic child even in elementary school!
I came across an article by Amy Daniels, Ph.D., an Autism Speaks health policy researcher, who gives an in-depth analysis of autism and wandering. At the end of the article she says: “The time to develop solutions is now.” I couldn’t agree with her more.
Here’s my solution. Every school yard needs to be 100% secured with high fences and no way to get in or out from the school compound. All exits from the school need to be monitored every day, all day.
With the number of children afflicted with autism growing, every school will have to be secured. Not only will this help children with autism, it will also help all children remain safe and give every parent a better night’s sleep.
t may be more accurate to say is an “escape artist,” as long as the child is in your care you can create a safe environment with locks on windows and doors and alarms that sound any time someone opens a window or door. Thousands of parents have created the equivalent of Fort Knox in their home and have trained everyone in the child’s orbit to ensure that the child does not leave. Parents are generally vigilant and the child is safe. Some parents have even elected to have a tracking system on their child as a last resort.The issue that keeps almost all of us awake is when our child is in the care of the school. Unfortunately, most children with autism in typical classrooms do not have locked, fenced school yards and enough supervision to keep these integrated children safe. The schools are very quick to defend their purportedly safe environments even when a parent sees all the gaping holes in security around the school. If the parent gets too pushy, the school bureaucracy often defends their lackadaisical stance and becomes aggressive with parents, possibly invoking the nuclear option by saying: “if this school is not secure enough for your little Johnny, then perhaps we need to reevaluate whether your child should be integrated.” Since so many parents are fighting for mainstreaming, this ends the discussion immediately and is one of the major motivations to get “lawyered up.” Some parents just give up and accept segregation due to the safety concerns.
Since the parent cannot rely on the school to protect the physical safety or their child, the next fight is to require one-on-one supervision in the school yard. The school then typically deploys the “buddy” system where they get older children to “supervise” the autistic child even in elementary school!
I came across an article by Amy Daniels, Ph.D., an Autism Speaks health policy researcher, who gives an in-depth analysis of autism and wandering. At the end of the article she says: “The time to develop solutions is now.” I couldn’t agree with her more.
Here’s my solution. Every school yard needs to be 100% secured with high fences and no way to get in or out from the school compound. All exits from the school need to be monitored every day, all day.
With the number of children afflicted with autism growing, every school will have to be secured. Not only will this help children with autism, it will also help all children remain safe and give every parent a better night’s sleep.
Music Therapy: Discordant Noise on the Internet
12/09/12 14:42
Information on music and autism abounds on the Internet. There is even a certification board for Music Therapists. That association has a rubric for autism. Autism Speaks (who should know a thing or two about science) is also getting into the act and creating legitimacy for Music Therapy by featuring a guest blogger who is involved in Music Therapy.
Ever the optimist, I thought there may be new research that perhaps I had missed amongst the usual noise on autism and Music Therapy. So I went to the American Music Therapy Association (AMTA) music therapy fact sheets & bibliograpies, in search of what they have on the topic.
This is what I found:
“The literature reports that most individuals with ASD respond positively to music. People with ASD often show a heightened interest and response to music, making it an excellent therapeutic tool for working with them.”
This reminds me of the Psychic Network infomercials of a few years ago: “Trust us, we’re for real!”
Now, please, don’t get the wrong idea. I’ve blogged about the value of music (“The Role of Music” Part 1 and Part 2) and how helpful it is for integration, employment, and enjoyment for people with autism; however, that is very different from the so-called autism intervention of Music Therapy.
In short, once again we need to remind Music Therapy advocates that for the broader community to take you seriously, please Show us the data!
Until such time, we should not be calling any activity involving music and people afflicted with autism, “therapy.”
Aside from what we know is established in the science, I’ve recently written about a preliminary bright spot in research on music - the targeting of non-verbal children with autism. However, this should not be confused with the fashion de jour Music Therapy that is being offered. This new area of research is experimental and developing in the field of Neurology. Hopefully, more evidence will soon be collected regarding these experimental techniques and non-verbal children with autism will hopefully have an effective treatment for speech impairment at some point in the future.
Ever the optimist, I thought there may be new research that perhaps I had missed amongst the usual noise on autism and Music Therapy. So I went to the American Music Therapy Association (AMTA) music therapy fact sheets & bibliograpies, in search of what they have on the topic.
This is what I found:
“The literature reports that most individuals with ASD respond positively to music. People with ASD often show a heightened interest and response to music, making it an excellent therapeutic tool for working with them.”
This reminds me of the Psychic Network infomercials of a few years ago: “Trust us, we’re for real!”
Now, please, don’t get the wrong idea. I’ve blogged about the value of music (“The Role of Music” Part 1 and Part 2) and how helpful it is for integration, employment, and enjoyment for people with autism; however, that is very different from the so-called autism intervention of Music Therapy.
In short, once again we need to remind Music Therapy advocates that for the broader community to take you seriously, please Show us the data!
Until such time, we should not be calling any activity involving music and people afflicted with autism, “therapy.”
Aside from what we know is established in the science, I’ve recently written about a preliminary bright spot in research on music - the targeting of non-verbal children with autism. However, this should not be confused with the fashion de jour Music Therapy that is being offered. This new area of research is experimental and developing in the field of Neurology. Hopefully, more evidence will soon be collected regarding these experimental techniques and non-verbal children with autism will hopefully have an effective treatment for speech impairment at some point in the future.
The Tragedy of Canada's Autism Treatment Neglect: a leading psychologist speaks
30/08/12 13:08
I just watched a fascinating, sixteen minute interview with a very well-respected Canadian psychologist -- Dr. Glen Davies -- who weighs in on a variety of issues pertaining to autism, including the rise in diagnoses, the efficacy of ABA as the treatment for autism through the lifespan and what happens when people with autism are not provided effective treatment. Dr. Davies discusses the fact that children with autism in Canada have been thoroughly abandoned by the health care system for their core health need, which of course is autism treatment. He provides valuable, sober advice to policy makers. This is definitely an interview worth watching!
Draining the swamp of autism health care discrimination, one state at a time
13/08/12 10:20
Delaware has become the next state to force health insurance companies to cover the diagnosis, and most importantly, the treatment of autism spectrum disorders. This requirement includes people with autism up to their 21st birthday! Delaware is the 32nd state to pass autism mandate legislation. Mental health parity marches on!
Congratulations to all those who works so hard on getting this legislation passed. Kudos to Autism Votes, an Autism Speaks Initiative.
The next five states to look forward to similar bills being passed are:
If you want to be part of this incredible state by state initiative, contact Autism Votes.
Congratulations to all those who works so hard on getting this legislation passed. Kudos to Autism Votes, an Autism Speaks Initiative.
The next five states to look forward to similar bills being passed are:
- Hawaii
- Minnesota
- Nebraska
- North Carolina
- Utah
If you want to be part of this incredible state by state initiative, contact Autism Votes.
Speech and Language Pathologists are the first responders for autism
27/07/12 11:17
SLPs are often the first professionals to see a child with autism because the child is not developing language in a typically developing fashion. SLPs often recognize autism immediately due to the symptoms of the disorder that include echolalia, delayed echolalia, lack of joint attention and general lack of communication. Due to their expertise, SLPs can be crucially important in getting parents to act quickly on early intervention. However, SLPs frequently find themselves in a quandary: they know something is amiss but they are not diagnosticians. Unless they are credentialed in diagnosing childhood disorders, they are not allowed to render a diagnosis of autism even when red lights are flashing.
I have seen this situation all too often. It’s so common that after the diagnosis, parents actually complain about the fact that no one – including the SLP who first worked with their child – ever told them that their child may be afflicted with autism. I’ve heard many parents say, "if I could only get that lost year back."
I would like to strongly encourage SLPs to let the parents know if there are greater concerns about the child's language development and suggest that the child may benefit from an intensive treatment program. If the SLP is allowed to use the "autism" word, they should! If that’s impermissible, then they should encourage the parent to visit a local developmental pediatrician who is known to diagnose autism quickly, and accurately. In order to find that pediatrician, I would contact the local Families for Early Autism Treatment (FEAT) or ABA parent group in the area, and ask for the name of the best diagnostician in town.
It is one thing to have this information and quite another to communicate the information in an effective manner. To that end, I would suggest the following words:
"I am very concerned about Johnny, and Dr. Jones is a pediatrician who will very quickly be able to tell you if you need to have your child in an intensive treatment program for this language delay. Dr. Jones will have excellent advice about what we need to do to help Johnny. Obviously I can work on your child's language and communication skills, but I want to make sure that we give your child the best start in life and I want to make sure that he reaches his full potential. The way to do this is through an assessment by Dr. Jones and possibly an intensive treatment program.”
I would also source the name of the best local psychologist who can diagnose the child. The local FEAT or ABA parent group should have the name of this professional. In addition, a good SLP should find out who in the area is a Board Certified Behavior Analyst (BCBA) who provides Intensive Behavioral Treatment (IBT) for autism. Armed with this knowledge, the SLP’s next step is to ask the parent group how parents in the area are funding the treatment. Depending upon jurisdiction, there may be laws protecting the child’s rights to treatment. The local FEAT type group will have this information.
Here’s the list of the steps an SLP can take when he or she is working with a child they suspect may have undiagnosed autism:
1) Find the professionals in your area who a) can provide a quick and accurate diagnosis e.g., pediatricians & psychologists, and b) are excellent practitioners in intensive behavioral treatment (e.g. BCBA)
2) Parent Group: a) find the parent group in your area that supports ABA (FEAT or FEAT-like organizations), and b) find out where and when they meet.
3) Sleuth out the funding agencies or insurance plans that pay for the treatment and find out how parents can best access these funds.
4) Create a New Parent Packet for information to give to these parents (or use the one that the local FEAT group provides)
Here are some tips to think about when an SLP is delivering the message:
- Stay on topic
- Don’t let immigrant status, poverty or lack of resources get in the way of helping these families access behavioral treatment programs.
If these folks have limited financial resources and are on a services wait list for several months, I would strongly recommend that they contact the local ABA parent group, which is free. There they will meet other parents who may help them find a way to get an earlier diagnosis.
- Ignore SLP colleagues who claim that everyone needs to take their own journey to come to the realization that their child has autism.
In short, you as an SLP have the power – and 1st responder insight – to speed up the diagnostic process considerably. Use your power for good!
Autism Treatment Insurance in Washington State Makes Huge Progress
27/07/12 10:14
Over the last few years, we’ve seen parents successfully advocate for state legislatures to pass autism treatment insurance mandates. As of June 13th, 2012, thirty-one states have joined this important roster of jurisdictions with insurance parity for mental health coverage, with another twelve states in the process of making autism treatment health insurance mandates a reality.
Autism advocates in Washington State are not sitting still and waiting for their state legislature to pass the law. In a class action suit, Washington State public employees have just won a big legal victory. Now all children with autism whose parents are insured through the Washington State employee healthcare plan (Uniform Medical Plan) are covered for autism treatment. These children are not the only group to be covered. In addition, Washington State’s Group Health Cooperative is going to be covering another 800 autism families! I’d say that the parent advocates in Washington State are having a very productive summer!
Autism advocates in Washington State are not sitting still and waiting for their state legislature to pass the law. In a class action suit, Washington State public employees have just won a big legal victory. Now all children with autism whose parents are insured through the Washington State employee healthcare plan (Uniform Medical Plan) are covered for autism treatment. These children are not the only group to be covered. In addition, Washington State’s Group Health Cooperative is going to be covering another 800 autism families! I’d say that the parent advocates in Washington State are having a very productive summer!
Has Autism Speaks gone over to the dark side?
19/07/12 12:22
Of all the organizations on the planet that could possibly discriminate against parents who have children with autism, the last one I thought would ever be on this list is Autism Speaks! Autism Speaks is the predominant autism advocacy organization set up to support research, treatment and advocacy for people with autism. The founders, Bob and Suzanne Wright, had a grandchild diagnosed with autism and had the motivation and wherewithal to make a significant difference for everyone touched by autism. Although I have been critical of Autism Speaks in the past, this latest development may set a new high water mark for hypocrisy.
I just read that Simone Greggs, a mother of a child with autism, had her job offer with Autism Speaks rescinded after she requested a minor accommodation to work from home one day per week since her son -- who is afflicted with autism -- returns home early on that day. Not only did Autism Speaks not grant her this trivial accommodation, they actually rescinded her job offer!
Unbelievable!
Ms. Greggs is now suing Autism Speaks, and I’m certain I speak for thousands in wishing her the best of luck!
I just read that Simone Greggs, a mother of a child with autism, had her job offer with Autism Speaks rescinded after she requested a minor accommodation to work from home one day per week since her son -- who is afflicted with autism -- returns home early on that day. Not only did Autism Speaks not grant her this trivial accommodation, they actually rescinded her job offer!
Unbelievable!
Ms. Greggs is now suing Autism Speaks, and I’m certain I speak for thousands in wishing her the best of luck!
When frivolous fringe autism therapies lose the humor
25/06/12 15:48
Every couple of weeks I seem to find some form of quackery that is mostly humorous and harmless. Examples I’ve written about in the past that are worth a chuckle include Mushroom Supplements, Horticulture Therapy, Camel’s Milk and Surfing Therapy.
I’ve just come across another wacky autism treatment: Horse or Equine Therapy. This therapy has been claimed to “recover” a child from autism. The child’s father authored a book that was so compelling it has now been made into a feel-good, Hollywood blockbuster. Testimonials make us feel hopeful and the movie industry laps up this kind of story. What is truly miraculous is the savvy nature of the parents who managed to get their book made into an award winning movie! It takes my breath away as to how talented these parents are to actually bring a project like this to fruition.
That said, it still remains true that autism treatment quackery is harmful and unfortunate because it takes away a child’s precious window of opportunity and parents’ money from treatments that are based on science.
Quackery backed up with a book and a well-made movie is a great fundraising conduit. As you read this, there is currently a “Horse Therapy” foundation raising money to provide this – ahem – treatment to help “recover” other children with autism. If they would only spend a fraction of this money on testing their therapy for efficacy using the scientific method, that would be a great use of the money!
Aside from expensive, mostly harmless quackery, every so often I run across a dangerous idea that stops me in my tracks. I was tempted to ignore this new therapy because the more publicity it garners, the more parents may get suckered into buying this snake-oil. However, after watching the presentation of these practitioners at a “conference” recorded on youtube, I saw how sophisticated their sell job was and I could not, in good conscience, ignore this latest “therapy” any longer.
Here’s what this new therapy entails. It is called the Miracle Mineral Solution (MMS). What is it? Practitioners give enemas to the autistic child using a form of bleach! Occasionally, they also give it to the children orally. The fact that this unstudied treatment has practitioners administer a bleach concoction at either end of a child’s system alarms me greatly!
What is particularly important to note is the unbelievably persuasive talent of these practitioners. Their sale’s job is very professional, utilizing all kinds of scientific jargon to hoodwink parents to actually consider subjecting their child to this frightening procedure. If you want to get into the weeds with details describing the full horror of the procedure, I would direct you to David Gorsky’s comprehensive analysis on MMS.
What is important to remember, though, is that there is no data published in peer-reviewed journals on the Miracle Mineral Solution (MMS). The claims of recovering thirty-eight children are simply unfounded assertions with NO peer-reviewed data to support them. Remember, if there is no data, there is no evidence!
In summary, I would just remind all parents that absent solid evidence, first assume your child’s health and safety may fall victim to quackery.
I’ve just come across another wacky autism treatment: Horse or Equine Therapy. This therapy has been claimed to “recover” a child from autism. The child’s father authored a book that was so compelling it has now been made into a feel-good, Hollywood blockbuster. Testimonials make us feel hopeful and the movie industry laps up this kind of story. What is truly miraculous is the savvy nature of the parents who managed to get their book made into an award winning movie! It takes my breath away as to how talented these parents are to actually bring a project like this to fruition.
That said, it still remains true that autism treatment quackery is harmful and unfortunate because it takes away a child’s precious window of opportunity and parents’ money from treatments that are based on science.
Quackery backed up with a book and a well-made movie is a great fundraising conduit. As you read this, there is currently a “Horse Therapy” foundation raising money to provide this – ahem – treatment to help “recover” other children with autism. If they would only spend a fraction of this money on testing their therapy for efficacy using the scientific method, that would be a great use of the money!
Aside from expensive, mostly harmless quackery, every so often I run across a dangerous idea that stops me in my tracks. I was tempted to ignore this new therapy because the more publicity it garners, the more parents may get suckered into buying this snake-oil. However, after watching the presentation of these practitioners at a “conference” recorded on youtube, I saw how sophisticated their sell job was and I could not, in good conscience, ignore this latest “therapy” any longer.
Here’s what this new therapy entails. It is called the Miracle Mineral Solution (MMS). What is it? Practitioners give enemas to the autistic child using a form of bleach! Occasionally, they also give it to the children orally. The fact that this unstudied treatment has practitioners administer a bleach concoction at either end of a child’s system alarms me greatly!
What is particularly important to note is the unbelievably persuasive talent of these practitioners. Their sale’s job is very professional, utilizing all kinds of scientific jargon to hoodwink parents to actually consider subjecting their child to this frightening procedure. If you want to get into the weeds with details describing the full horror of the procedure, I would direct you to David Gorsky’s comprehensive analysis on MMS.
What is important to remember, though, is that there is no data published in peer-reviewed journals on the Miracle Mineral Solution (MMS). The claims of recovering thirty-eight children are simply unfounded assertions with NO peer-reviewed data to support them. Remember, if there is no data, there is no evidence!
In summary, I would just remind all parents that absent solid evidence, first assume your child’s health and safety may fall victim to quackery.
Pennsylvania's Doctors Take Charge of Autism Treatment Standards
22/06/12 13:14
Pennsylvania has taken a very important step toward professionalizing the field of autism treatment. The Pennsylvania State Board of Medicine is now granting behavioral specialist licenses to professionals who treat children with autism spectrum disorder. This is a huge development because finally children with autism, a neurological condition, will be treated by professionals who will be under the auspices of a medical board instead of subordinated to special education systems that do not have the organizational culture of excellence in autism treatment in particular, and do not understand the value and importance of data in measuring progress. In short, the educational model of specialized teaching has an abysmal track record when it comes to autism treatment. This makes sense because autism is not a “learning disorder.” The special education system will hopefully now cooperate with the medical system in the same way that education is required to cooperate with a medical supervisor when a physically disabled child has any other medical condition.
What’s particularly promising about the new Pennsylvania requirement is that every autism treatment practitioner, including behavior specialists, needs to complete autism-specific training. Parents of children with autism and many Board Certified Behavior Analysts who work with children on the autism spectrum have been asking for specialist standards and licensing for behavior specialists working with children with autism. Being a specialist in Applied Behavior Analysis is not sufficient when it comes to treatment for children afflicted with autism. That next step, a recognized specialty for autism treatment that ABA professionals must meet, is what makes the Pennsylvania initiative so important.
The overall effect of this change in the status quo is that requirements demanded of professionals who work with children on the Autism spectrum are going to become more rigorous over time. This means that all the kooks and quacks will no longer find the field of autism to be as warm and cozy a corner of the disability world in which to park their incompetent caboose!
Now that Pennsylvania has raised the bar, hopefully other jurisdictions will follow suit. Our children deserve no less!
What’s particularly promising about the new Pennsylvania requirement is that every autism treatment practitioner, including behavior specialists, needs to complete autism-specific training. Parents of children with autism and many Board Certified Behavior Analysts who work with children on the autism spectrum have been asking for specialist standards and licensing for behavior specialists working with children with autism. Being a specialist in Applied Behavior Analysis is not sufficient when it comes to treatment for children afflicted with autism. That next step, a recognized specialty for autism treatment that ABA professionals must meet, is what makes the Pennsylvania initiative so important.
The overall effect of this change in the status quo is that requirements demanded of professionals who work with children on the Autism spectrum are going to become more rigorous over time. This means that all the kooks and quacks will no longer find the field of autism to be as warm and cozy a corner of the disability world in which to park their incompetent caboose!
Now that Pennsylvania has raised the bar, hopefully other jurisdictions will follow suit. Our children deserve no less!
The British Commonwealth has something quite unsporting in common
19/06/12 12:31
Back in March of this year, I wrote about the outrageous story of an American autism researcher who has been denied citizenship by Canada because he has a child with autism. At the time, I thought that this was a rare occurrence, that Canada somehow has a particularly pernicious, heartless immigration bureaucracy where autism is concerned. I was wrong.
Move over Canada. Make room for Australia!
The Threlfall Family
“His daughter had not met the legislated health requirement, which was partly to restrict public expenditure on healthcare and community services.”
I notice a theme. Polities with government owned, socialized medicine seem to harbor systematic immigration discrimination against autism. I hope the trend of parliamentary democracies discriminating against high quality immigrants that happen to have a child afflicted with autism is not a bureaucratically contagious disorder. In the cause of proper stewardship of the public purse, we’re in fact witness to the height of immorality.
Coming soon to a neighborhood near you!
12/06/12 13:30
The Atlantic Magazine recently published an excellent article enumerating the myriad ways that an autism diagnosis changes a family forever. For those of us who have been in the world of autism for decades, these issues are well known and have been experienced firsthand, but for those on the periphery, the following inventory gives some insight as to why parents of children with autism become cantankerous as the years roll on.
The first example of the “silver lining” of the proliferation of autism is the diagnosis of the grandchild of the founders of Autism Speaks, the Wright family. Here we have well-heeled people with a megaphone, tremendous resources, outstanding organizational ability and the wherewithal to make a difference not only for their grandchild but also for the entire population of families and children with autism world-wide.
Recently I came across another so-called draft pick who is making a difference. Dr. Ricardo Dolmetch, a neuroscience researcher, who recently joined our club of parents of children with autism. Dr. Dolmetch changed his entire research focus to make a difference. He is now working to crack the autism code to lead to a better understanding of the disorder, with the goal of better treatments and, hopefully, an eventual cure.
With every new diagnosis, the ranks of our club grow. Hopefully, there will be strength in numbers. Until a cure is found, demographic facts on the ground are sure to change the status quo to the point that society will have to accommodate the reality of having a child diagnosed with autism so that the traumatic parent advocacy burden and financial ruin from self-funded autism treatment will be a thing of the past.
- the awful realization that one’s child will have monumental challenges with basic skills that we all take for granted such as language, self-help skills, academic skills, social skills, employment and living arrangements with dignity!
- the fact that the parents’ economic future will be crushed due to a) the massive, never-ending cost of therapy and supervision and b) the opportunity costs of careers derailed throughout the lifespan of the family.
- the no-choice advocacy that necessarily pits parents against recalcitrant school districts, health care bureaucrats or insurance companies and government agencies who deny necessary and appropriate autism accommodation.
- the career of the mother or father that is irreparably damaged early on in the child’s treatment due to the ongoing management and advocacy required to ensure access to treatment and appropriate education.
- a society oblivious to the time-consuming and financially ruinous reality of having a child afflicted with autism
The first example of the “silver lining” of the proliferation of autism is the diagnosis of the grandchild of the founders of Autism Speaks, the Wright family. Here we have well-heeled people with a megaphone, tremendous resources, outstanding organizational ability and the wherewithal to make a difference not only for their grandchild but also for the entire population of families and children with autism world-wide.
Recently I came across another so-called draft pick who is making a difference. Dr. Ricardo Dolmetch, a neuroscience researcher, who recently joined our club of parents of children with autism. Dr. Dolmetch changed his entire research focus to make a difference. He is now working to crack the autism code to lead to a better understanding of the disorder, with the goal of better treatments and, hopefully, an eventual cure.
With every new diagnosis, the ranks of our club grow. Hopefully, there will be strength in numbers. Until a cure is found, demographic facts on the ground are sure to change the status quo to the point that society will have to accommodate the reality of having a child diagnosed with autism so that the traumatic parent advocacy burden and financial ruin from self-funded autism treatment will be a thing of the past.
Thomas Sowell Got it Half Right
08/06/12 11:14
In his latest article, Redefining autism a sales tactic, Dr. Thomas Sowell, Rose and Milton Friedman Senior Fellow on Public Policy at the Hoover Institution at Stanford University, makes the point that autism is being redefined and many more children who would not be diagnosed as autistic in the past are being diagnosed today in greater numbers. His argument is that the redefining of autism to include a larger number of children is a way for politicians to bleed more money from the taxpayer. Dr. Sowell clearly understands the condition of genuine autism when he states:
Every dollar spent on children falsely labelled autistic is a dollar lost -- and urgently needed -- in dealing with the severe problems of genuinely autistic children.
Prior to the reclassification of autism in the DSM-V, I would have disagreed vociferously with his argument regarding the purported motive of politicians. Perhaps abuse occurred in the past due to economic incentives, with some children being diagnosed with autism, rather than intellectual impairment or speech and language; however, full fledged autism is so obvious that the occasional parent on the margin who conspires with a diagnostician would not account for the true explosion of children with autism that we see today. It is my view that we do have a real increase in children with autism.
Unfortunately, with the introduction of the DSM-V, we have a new diagnostic classification of autism that includes an army of children who are very mildly affected. This is going to:
Although I’m not sure that I would agree with Sowell’s argument that the motive of politicians is to overtax the public by using autism as an excuse, it is correct that with the new diagnostic criteria, treatment for children with autism is in danger of being rationed. So if you have a child with genuine autism, get ready for a fight.
Every dollar spent on children falsely labelled autistic is a dollar lost -- and urgently needed -- in dealing with the severe problems of genuinely autistic children.
Prior to the reclassification of autism in the DSM-V, I would have disagreed vociferously with his argument regarding the purported motive of politicians. Perhaps abuse occurred in the past due to economic incentives, with some children being diagnosed with autism, rather than intellectual impairment or speech and language; however, full fledged autism is so obvious that the occasional parent on the margin who conspires with a diagnostician would not account for the true explosion of children with autism that we see today. It is my view that we do have a real increase in children with autism.
Unfortunately, with the introduction of the DSM-V, we have a new diagnostic classification of autism that includes an army of children who are very mildly affected. This is going to:
- give the neuro-diversity folks legitimacy for the bogus contention that they suffer from autism and can therefore speak for children with autism who are nonverbal,
- have autism redefined as a “difference” rather than a disabling condition,
- provide “hothousing” opportunities for parents whose children do not suffer from autism or Asperger’s syndrome,
- bleed resources from children who truly need intensive behavioral treatment in order to be productive, functional adults who can live a life in dignity rather than being institutionalized
- justify the rationing of treatment from the most severely affected children due to the fact that they will not advance as quickly as the others on the autism spectrum. This rationing will come from educational systems, health-care systems and/or insurance companies.
Although I’m not sure that I would agree with Sowell’s argument that the motive of politicians is to overtax the public by using autism as an excuse, it is correct that with the new diagnostic criteria, treatment for children with autism is in danger of being rationed. So if you have a child with genuine autism, get ready for a fight.
The Latest Academic Justification to Ration Treatment is a Doozy
06/06/12 20:41
The latest article to come out about autism from California (Fountain et al, 2012) creates six developmental trajectories that characterize children with autism. Why should we care? It’s quite straightforward. The outcome of this research can be used to both justify providing treatment for children with autism and also the rationing of treatment for those children with autism who have an “intellectual disability” and are therefore deemed unworthy of scarce resources.
Here’s the summary.
Fountain and colleagues followed almost seven thousand children diagnosed with autism born in California, from 1992 through to 2001. Then they created six “trajectories” in an effort to predict how well the children will progress based on various dimensions. Although this article is full of findings that may be disturbing to parents for a variety of reasons, in my view the most dangerous findings have to do with intellectual disability and where the mother was born! The researchers found that:
“Having an intellectual disability was strongly associated with LF (Low Functioning) trajectories, as was having a foreign-born mother. Finally, children of white mothers were less likely to be LF than bloomers, as were children of Hispanic mothers (relative to nonwhites).” p. e1117
Allow me to translate: if your child at diagnosis is given an IQ test and does not score in the normal range, and/or if you are a foreign born mother, watch out! Those rationing treatment may use this article to deny your child treatment. Immigrant parents need to be particularly vigilant!
Luckily, there is one finding that can be used to argue against those rationers: The Late Bloomer. In this article, they found one group of children who are late bloomers. These children,
“… most likely to “bloom” are those without intellectual disability and those with more educated, non- minority mothers. Although we are unable to identify the specific mechanisms through which socioeconomic status affects trajectory outcomes, the intervening variables likely include home and neighborhood environments, quality and intensity of treatment, quality of education, the efficacy with which parents are able to advocate for their children with institutions providing services, and many other factors in various permutations.” p. e1118
In other words, if the child’s IQ was typical at diagnosis, and parents were better advocates with money to purchase superior treatment services, their children improved significantly.
So what do we do about the IQ tests? My view is since IQ testing is so wildly inaccurate when it comes to young children with autism, it seems criminal to seal their fate with a socially constructed test that has a decades-long history of being discriminatory in its impact.
What about minority or immigrant status of the parent? When it comes to the parent’s minority status, that’s when the discrimination becomes explicit. In short, if you smell discrimination, let this article alert you to protect yourself and your child! If you are in a minority, make sure that you find an advocate to write letters for you and attend meetings with you about your child. Keep this article in your back pocket if you suspect that your minority status is influencing the treatment or placement services of your child. When you demand equal treatment for your child, the system will be more likely to listen to you if you have evidence from a peer-reviewed journal that discrimination against children like yours has been going on for decades.
Here’s the summary.
Fountain and colleagues followed almost seven thousand children diagnosed with autism born in California, from 1992 through to 2001. Then they created six “trajectories” in an effort to predict how well the children will progress based on various dimensions. Although this article is full of findings that may be disturbing to parents for a variety of reasons, in my view the most dangerous findings have to do with intellectual disability and where the mother was born! The researchers found that:
“Having an intellectual disability was strongly associated with LF (Low Functioning) trajectories, as was having a foreign-born mother. Finally, children of white mothers were less likely to be LF than bloomers, as were children of Hispanic mothers (relative to nonwhites).” p. e1117
Allow me to translate: if your child at diagnosis is given an IQ test and does not score in the normal range, and/or if you are a foreign born mother, watch out! Those rationing treatment may use this article to deny your child treatment. Immigrant parents need to be particularly vigilant!
Luckily, there is one finding that can be used to argue against those rationers: The Late Bloomer. In this article, they found one group of children who are late bloomers. These children,
“… most likely to “bloom” are those without intellectual disability and those with more educated, non- minority mothers. Although we are unable to identify the specific mechanisms through which socioeconomic status affects trajectory outcomes, the intervening variables likely include home and neighborhood environments, quality and intensity of treatment, quality of education, the efficacy with which parents are able to advocate for their children with institutions providing services, and many other factors in various permutations.” p. e1118
In other words, if the child’s IQ was typical at diagnosis, and parents were better advocates with money to purchase superior treatment services, their children improved significantly.
So what do we do about the IQ tests? My view is since IQ testing is so wildly inaccurate when it comes to young children with autism, it seems criminal to seal their fate with a socially constructed test that has a decades-long history of being discriminatory in its impact.
What about minority or immigrant status of the parent? When it comes to the parent’s minority status, that’s when the discrimination becomes explicit. In short, if you smell discrimination, let this article alert you to protect yourself and your child! If you are in a minority, make sure that you find an advocate to write letters for you and attend meetings with you about your child. Keep this article in your back pocket if you suspect that your minority status is influencing the treatment or placement services of your child. When you demand equal treatment for your child, the system will be more likely to listen to you if you have evidence from a peer-reviewed journal that discrimination against children like yours has been going on for decades.
Magical Mushrooms Stirred for Autism
01/06/12 13:55
I recently read a treatise of sorts on the “nutritional, health, medicinal properties and possible behavioral effects” of a variety of mushrooms. This claim is being made by a Ph.D. who is also the owner of a mushroom farm. She argues that since mushrooms help to strengthen and stimulate the immune system, it is logical that they would be beneficial in ameliorating autism. Interesting theory. These claims have even been presented at the Autism One Conference, to further garner legitimacy for the wonder treatment. It is further claimed by a physician that White Mushrooms, “help detoxify the body and they may reduce the need for repeated behaviors.”
Who knew that all we have to do is stir fry some mushrooms and voila, our children’s stereotypic behavior will disappear!
Since it’s never a good idea to discount a theory merely because it sounds implausible, I did a search for peer-reviewed journal articles that test mushrooms as a treatment for autism. Although I did find an article discussing the theory, I did not find a single study comparing children being treated with mushrooms with a control group. No surprise, but I had to check!
In short, I’ll let you know when these mushroom purveyors provide some data. Until that time, enjoy your mushrooms in the stir fry.
Autism Conferences: Proceed with Caution
25/05/12 09:35
Some parts of the autism world appear to be exhilarated about the latest International Meeting for Autism Research (IMFAR) conference in Toronto, where researchers from all over the world presented their findings at the May meeting. In the past, scientists would get together to lecture on ideas and present preliminary results. Every participant understood, though, that one’s presentation is given before all scientific peers have had a chance to closely scrutinize the findings. The rubber meets the road only after blind reviewers in the field have scrutinized the proposed article.
At the recent IMFAR conference, we apparently now have people with Asperger’s syndrome and parents joining in the “festivities.” Based on the amount of hoopla generated by this conference, it appears as though the fundamental precept regarding how science progresses has been lost on many participants at the conference.
We need to understand that there can be no short cuts when it comes to the scientific method. Circumventing the process of science helps purveyors of quackery and hurts people with autism in the long run. As difficult as may be, we need to be patient and let reputable scientists do their job.
It’s fine to have some fun at an IMFAR conference, but remember, until findings are published in a peer-reviewed journal and clinical trials have been completed, the purported “findings” from an event like the International Meeting for Autism Research, are merely preliminary, at best. Proceed with caution.
At the recent IMFAR conference, we apparently now have people with Asperger’s syndrome and parents joining in the “festivities.” Based on the amount of hoopla generated by this conference, it appears as though the fundamental precept regarding how science progresses has been lost on many participants at the conference.
We need to understand that there can be no short cuts when it comes to the scientific method. Circumventing the process of science helps purveyors of quackery and hurts people with autism in the long run. As difficult as may be, we need to be patient and let reputable scientists do their job.
It’s fine to have some fun at an IMFAR conference, but remember, until findings are published in a peer-reviewed journal and clinical trials have been completed, the purported “findings” from an event like the International Meeting for Autism Research, are merely preliminary, at best. Proceed with caution.
When play is no fun: The junk science of play therapy for kids with autism
18/05/12 18:24
It only takes a quick scan of the news to spot two new attempts to use variations of play therapy (or child-led therapy) to address the vexing condition of autism.
First, the Wall Street Journal, in its “In the Lab” section which highlights new scientific research, apparently falls victim to the same faux elixir that journalists have lapped up for the last three decades; however, this time, academic legitimacy is being used by the Kennedy Krieger Institute in its test of early intervention play groups on children who are at risk for autism.
Second, Autism Speaks is sponsoring the Toddler Treatment Network (TTN)which researches treatments that are appropriate for children under eighteen months of age. Although the TTN is involved in research, they are also attempting to get developmental interventions covered by insurance, doing so by conflating behavioral and developmental approaches. The TTN states: “But there is no hard and fast line between behavioral and developmental approaches.” This blurring between developmental and behavioral approaches further adds confusion. Many purveyors of play therapy or child-led therapy call their so-called treatments developmental. These developmental therapies suffer from a lack of evidence in terms of efficacy. This goes for Floortime, the Playschool and the SCERTS Model to name just a few child-led, parent facilitated therapies.
What is different about these latest attempts at legitimating yet a new form of play therapy is that first, the therapy is being used with children who are at risk for autism but don’t yet have the diagnosis. Second, this form of developmental therapy is creeping into mainstream academe, despite its stark lack of supporting data regarding therapeutic effectiveness.
Should we be concerned about this latest attempt to associate play and autism treatment? Yes. I would submit the following:
Three decades of research on various forms of developmental, child-led, play therapy have shown the method to be utterly ineffective as a treatment for children with autism. Recent work conducted by the Kennedy Krieger Institute or the Autism Speaks Toddler Treatment Network does not appear to have changed that fact.
First, the Wall Street Journal, in its “In the Lab” section which highlights new scientific research, apparently falls victim to the same faux elixir that journalists have lapped up for the last three decades; however, this time, academic legitimacy is being used by the Kennedy Krieger Institute in its test of early intervention play groups on children who are at risk for autism.
Second, Autism Speaks is sponsoring the Toddler Treatment Network (TTN)which researches treatments that are appropriate for children under eighteen months of age. Although the TTN is involved in research, they are also attempting to get developmental interventions covered by insurance, doing so by conflating behavioral and developmental approaches. The TTN states: “But there is no hard and fast line between behavioral and developmental approaches.” This blurring between developmental and behavioral approaches further adds confusion. Many purveyors of play therapy or child-led therapy call their so-called treatments developmental. These developmental therapies suffer from a lack of evidence in terms of efficacy. This goes for Floortime, the Playschool and the SCERTS Model to name just a few child-led, parent facilitated therapies.
What is different about these latest attempts at legitimating yet a new form of play therapy is that first, the therapy is being used with children who are at risk for autism but don’t yet have the diagnosis. Second, this form of developmental therapy is creeping into mainstream academe, despite its stark lack of supporting data regarding therapeutic effectiveness.
Should we be concerned about this latest attempt to associate play and autism treatment? Yes. I would submit the following:
- At Risk for Autism is not Autism. The Kennedy Krieger Institute conducts research on children who are between one and two years of age whom they consider to be “at risk” for autism. It is highly irregular -- and suspect -- to utilize a non-diagnosis of “at risk for autism” as the basis of research to test any autism treatment, and in this instance, a reincarnated form of play therapy. Kennedy Krieger researchers are unwittingly (perhaps) stacking the deck for a form of play therapy to register as a legitimate intervention for the condition. “At risk” for autism, is clearly not equivalent to autism!
- Even more outrageous is that the program for two year olds who have all been diagnosed with autism at the Kennedy Krieger Institute does not include best practices, which is intensive behavioral treatment; rather, these children are participating in an experimental intervention model run by a speech and language pathologist!
- The intervention model is not being tested with a control group! Are they performing comparative tests between children at risk using their form of play therapy, against children receiving best practices Behavioral Treatment for autism? No. Inexplicably, the intervention model is a form of play therapy only.
- Parents as therapists. Once again, researchers are using parents as therapists because it’s cheap! The Autism Speaks “expert” states: “One potential way to increase intervention hours is for parents to continue practice at home.” If the Autism Speaks Director of Research for Environmental Sciences had a child with autism and were to take her own advice, she would most likely have to trade her career at Autism Speaks for her new role as free parent labor for autism therapy. Only with autism do so-called experts have the temerity to suggest that parents should “treat” their own children.
- Segregation from the earliest age. We are now segregating children from their typically developing peers at age one, even before a diagnosis is made, in an attempt to “help” them.
- Proliferate a treatment with scant evidence. The Kennedy Krieger researchers have indicated their desire to transfer this “method” of autism intervention into public school settings, which will further decrease the ability of schools to succeed with children afflicted by autism.
Three decades of research on various forms of developmental, child-led, play therapy have shown the method to be utterly ineffective as a treatment for children with autism. Recent work conducted by the Kennedy Krieger Institute or the Autism Speaks Toddler Treatment Network does not appear to have changed that fact.
Don't bet the farm on this new "therapy"
14/05/12 16:42
A graduate student and professor from Kansas State University, Katie Kingery-Page, and Chelsey King, have designed a “therapeutic landscape” for children with autism that has the goal of integration, yet is designed so as not to overwhelm the child with autism. To that end, all kinds of seemingly wonderful sections of the playground have been designed. From a “music garden” to an “edible garden/greenhouse,” we now have a new addition to the tableau of autism interventions out there: “horticulture therapy.” In addition, developers of this intervention assure that the “therapeutic landscape “ provides lots of places to hide if the child with autism gets overwhelmed. This new intervention method is said to be designed for “building sensory experience and communication.” What a utopian landscape!
For a moment, let’s ignore the fact that there is absolutely no evidence from peer-reviewed journals to support the notion that horticulture therapy is effective in ameliorating any symptoms of autism. Let’s consider that there are two very important things missing from this seemingly idyllic wonderland, if children with autism are going to be truly accommodated in the novel protocol:
- there must be no way for a child with autism to enter or leave the space without an adult being present to allow the entry or exit,
- every single inch of that playground needs to be monitored from one area, so that there are no hidden alcoves from supervising adults. It is on the playground where safety issues are paramount! Often this is when children with autism wander off and are bullied, or worse.
Here’s the main point: if you want successful integration, the number one issue is individual child safety. For some reason, educational systems can’t seem to figure this out. They understand the importance of creating segregated sites that are like fortresses; however, the minute there is integration, the safety issue is ignored!
I suggest that these designers go back to their utopian design and look at it with new eyes. Once every safety issue is addressed, and they lose the term “therapy” to justify their design, I’m all for creating a fun place for children and their typically developing peers to interact.
George Will hits one out of the ballpark
07/05/12 20:14
Although I don’t follow Washington Post columnist George Will on a regular basis, and I don’t know him personally, his recent article which celebrates the birthday of his 40 year old son born with Down Syndrome, makes me feel like he and I are in the same exclusive club: determined and tenacious parents of children with a disability. The disabilities are different, each with their own challenges; we are a generation apart, but the orientation is the same. We want to make sure that our children have a meaningful life that is lived with dignity and that they reach their full potential.
What is interesting, though, is that Will describes parents of children with Down Syndrome as not having “any tormenting sense of what might have been” since Down Syndrome is apparent from birth. That is clearly different from parents of children with autism since autism is not obvious from birth and, indeed, most of us do have a tormented sense of a future that is not to be. After two to three years living with a baby who we expect will grow up to be a typically developing adult, we discover that our child is not developing on a typical trajectory and will need thousands of hours of treatment (and hundreds of thousands of dollars) to learn the most basic of skills. Our torment may be quite functional, though, since it motivates us to fight for effective autism treatment with the hope that our children will improve, perhaps to the point where they may, some day, become indistinguishable from their typically developing peers.
George Will also describes a world that would be better if there were more people with Down Syndrome, due to their socially pleasant demeanor. Like children with Down Syndrome, children with autism also introduce society to opportunities for everyone to challenge their own sense of acceptance or tolerance. Yet children with autism provide a greater challenge since they are not naturally sociable. In fact, our kids regularly break societal norms and often need to be taught a considerable number of social conventions. Will further mentions that 90% of fetuses with Down Syndrome are now aborted due to our societal obsession with perfection. As we become more knowledgeable about what causes autism, I fear that in the race for perfection, there may be the same rate of abortion of children with autism who are diagnosed in the womb.
What garners respect for Dr. Will is his unqualified, public pride in his son as he highlights the meaningful life that his son enjoys. It is heartwarming that when Jon Will independently negotiates public transit to spend his days enjoying life, sitting in the stadium rooting for his favorite baseball team he is truly an equal. At the end of the day, a happy, independent life is the ultimate goal we have for our disabled children as well.
What is interesting, though, is that Will describes parents of children with Down Syndrome as not having “any tormenting sense of what might have been” since Down Syndrome is apparent from birth. That is clearly different from parents of children with autism since autism is not obvious from birth and, indeed, most of us do have a tormented sense of a future that is not to be. After two to three years living with a baby who we expect will grow up to be a typically developing adult, we discover that our child is not developing on a typical trajectory and will need thousands of hours of treatment (and hundreds of thousands of dollars) to learn the most basic of skills. Our torment may be quite functional, though, since it motivates us to fight for effective autism treatment with the hope that our children will improve, perhaps to the point where they may, some day, become indistinguishable from their typically developing peers.
George Will also describes a world that would be better if there were more people with Down Syndrome, due to their socially pleasant demeanor. Like children with Down Syndrome, children with autism also introduce society to opportunities for everyone to challenge their own sense of acceptance or tolerance. Yet children with autism provide a greater challenge since they are not naturally sociable. In fact, our kids regularly break societal norms and often need to be taught a considerable number of social conventions. Will further mentions that 90% of fetuses with Down Syndrome are now aborted due to our societal obsession with perfection. As we become more knowledgeable about what causes autism, I fear that in the race for perfection, there may be the same rate of abortion of children with autism who are diagnosed in the womb.
What garners respect for Dr. Will is his unqualified, public pride in his son as he highlights the meaningful life that his son enjoys. It is heartwarming that when Jon Will independently negotiates public transit to spend his days enjoying life, sitting in the stadium rooting for his favorite baseball team he is truly an equal. At the end of the day, a happy, independent life is the ultimate goal we have for our disabled children as well.
Successful Autism Integration: How it makes ALL kids better human beings
02/05/12 13:08
As parents of children with autism, we want our children to have the same kind of enriching experiences in life as do typically developing children. The best way to ensure a rich childhood, full of opportunities, is to integrate our children with typically developing children.
Unfortunately, there are often barriers created by a variety of people, particularly a small percentage of parents of typically developing children. These parents see no benefit for their children to be integrated with children who are challenged with special needs. This is particularly true when it comes to the integration of children afflicted with autism. Let’s face it: our children are not always reinforcing for others and they often behave in ways that completely ignore social norms. This can create discomfort for some.
However, what many parents of typically developing children do not understand is the tremendous value of successful integration of the disabled for their typically developing children.
So what is the value of successful integration for typically developing kids? Here is a partial list.
Typically developing children:
That’s a long list of very valuable benefits to integration; however, the most important benefit for typically developing children when they are properly integrated and interacting with children who suffer from autism, is that they learn to become decent human beings. I think most would agree we can use more of that in our society.
Many parents send their children to faith-based organizations to learn how to be a person with good values. Just add a child with autism to the mix, and the learning process is greatly accelerated.
Unfortunately, there are often barriers created by a variety of people, particularly a small percentage of parents of typically developing children. These parents see no benefit for their children to be integrated with children who are challenged with special needs. This is particularly true when it comes to the integration of children afflicted with autism. Let’s face it: our children are not always reinforcing for others and they often behave in ways that completely ignore social norms. This can create discomfort for some.
However, what many parents of typically developing children do not understand is the tremendous value of successful integration of the disabled for their typically developing children.
So what is the value of successful integration for typically developing kids? Here is a partial list.
Typically developing children:
- learn not to prejudge the ability of others
- learn how to break down skills and teach them to others, thereby becoming excellent teachers
- are exposed to exceptionally positive role models in the form of therapists, psychologists and tutors
- receive much more positive adult attention than they otherwise would in a large group of children, since successful integration requires the adult/child ratio to be greater
- learn to feel very good about themselves and their ability to lead
- are forced to look beyond their egocentric world and see that there are others in the world with real challenges, who are far less fortunate only because they drew the short straw in life’s lottery
- become very comfortable with people who are disabled
- learn empathy
- are protected from bullying due to the increased adult supervision that surrounds children with autism
- are provided more enriching opportunities due to the adults who often orchestrate and/or design rich social interactions
- are exposed to potential career opportunities and lucrative job prospects
- have a great experience to put on their resume when applying to college
That’s a long list of very valuable benefits to integration; however, the most important benefit for typically developing children when they are properly integrated and interacting with children who suffer from autism, is that they learn to become decent human beings. I think most would agree we can use more of that in our society.
Many parents send their children to faith-based organizations to learn how to be a person with good values. Just add a child with autism to the mix, and the learning process is greatly accelerated.
A "How To" Guide for Autism Junk Science
17/04/12 17:12
The latest attempt to use science to deny children with autism access to treatment came into my e-mail recently. I think this one needs to be shared.
Here’s the background.
The Ontario government has created a set of benchmarks to monitor progress and facilitate clinical decision-making for children in behavioral autism treatment programs. In the vernacular for the rest of us who are outside of government-based healthcare or social services, “benchmarks to facilitate ...decision-making”, means rationing of care. The general idea is to deny ongoing treatment for children with autism who don’t progress quickly, per a set government-approved schedule. This, of course, is to the benefit of the public purse at the expense of children with autism.
Regrettably, this article, Testing the Application of Benchmarks for Children in Ontario’s IBI program: Six Case Studies, is now being used to ration autism treatment in the Province of Ontario. Ontario’s method for rationing treatment can only work if junk science is credibly crafted and packaged with faux legitimacy.
Here’s the “how to” ... 5 easy steps to junk science, using the Government of Ontario’s latest gambit as an illustration (although this works equally well in any country with socialized medicine):
Here’s the background.
The Ontario government has created a set of benchmarks to monitor progress and facilitate clinical decision-making for children in behavioral autism treatment programs. In the vernacular for the rest of us who are outside of government-based healthcare or social services, “benchmarks to facilitate ...decision-making”, means rationing of care. The general idea is to deny ongoing treatment for children with autism who don’t progress quickly, per a set government-approved schedule. This, of course, is to the benefit of the public purse at the expense of children with autism.
Regrettably, this article, Testing the Application of Benchmarks for Children in Ontario’s IBI program: Six Case Studies, is now being used to ration autism treatment in the Province of Ontario. Ontario’s method for rationing treatment can only work if junk science is credibly crafted and packaged with faux legitimacy.
Here’s the “how to” ... 5 easy steps to junk science, using the Government of Ontario’s latest gambit as an illustration (although this works equally well in any country with socialized medicine):
- Create a substandard patchwork of programs to treat children with autism, but slap a label on them that reads, “Intensive Behavioral Treatment (IBI).” In other words, use the language of science for programs that are utterly devoid of it.
- Non-randomly observe six children who have completed the substandard, government IBI program (the “direct service model” staffed by government workers). Then use a “case study” method to measure the progress of these children, since scientific rigor is too difficult and costly, and harder to manipulate by self-interested government technocrats. Do not include children who are in high quality programs since it would be inconvenient to provide evidence that children make considerable progress in non-government controlled, privately run programs.
- Create “benchmarks” for terminating treatment based partially on American benchmarks that were not rigorously peer-reviewed. These local so-called “Made in Canada” benchmarks provide government the tools with which to fail kids with autism and thereby prematurely end treatment i.e., ration care.
- To six children, apply these government benchmarks, created by government-owned academics who receive a variety of research contracts directly from government departments and are government witnesses testifying against children with autism in court. Then provide bogus evidence regarding the efficacy of the government funded benchmarks.
- Publish the “evidence” as to the efficacy and appropriateness of these benchmarks in a third-rate Canadian journal where one of the two authors happens to be on the editorial board and the other is the treasurer of the association that publishes the journal. The corrupt academic article then provides scientific legitimacy for government lawyers when these benchmarks are challenged in court.
And Viola!
You’ve created government-approved junk science in five easy steps. Let’s hope Ontario judges are onto this corrupt game and remember what happened the last time junk science was introduced in a Canadian court to defend the Government of British Columbia against the serious charge of constitutional discrimination against children with autism. Dishonest academics in bed with dishonorable government is as ugly now as it was during the landmark Auton Case.
Does Floortime Therapy Work? We're still waiting for the evidence.
16/04/12 15:42
I’ve been reading about Floortime/DIR Autism Therapy for the last twenty years and have also written about this topic at length before. The theory behind this form of “play” therapy always sounded compelling because it appears to mesh well with a very nurturant style of child-rearing. Unfortunately, during the last two decades, there has been very little in the way of scientific testing to support the purported efficacy of this method. Although there have been many dozens of uncontrolled studies, Floortime Therapy has never been subjected to the rigor of science, much to the frustration of adherents to the scientific method.
Finally, in 2011, there was an attempt to add scientific rigor to the testing of Floortime autism treatment. Recently, the Canadian Broadcasting Corporation (CBC) showcased Floortime Therapy and the purported science supporting the therapy.
I watched with great interest as a professor from York University was interviewed regarding this so-called “break through” in autism treatment. I took down the name of the researcher and started to look for the peer-reviewed journal article created by this researcher from a legitimate university. I couldn’t find a 2012 study, so I wrote to the research center and they kindly sent me the latest article, which was actually a 2011 article that I had already read. In the 2011 study I received, there was no report of the brain scans that were highlighted in the CBC news clip. When I contacted the research center, I was told that the information on the brain scans had not yet been published.
Since there has been so much publicity regarding this latest article, I’ve decided to present a short analysis on the 2011 Floortime study conducted by Casenhiser, Shanker and Stieben.
The article’s strengths:
The article’s weaknesses as described by the researchers involved in the study:
Additional Weaknesses:
The central weakness of the 2011 study:
Bottom Line: Based on the studies that have been conducted to this point on Floortime, there is no evidence to suggest that Floortime is an effective treatment for autism.
We eagerly await the solid evidence!
Finally, in 2011, there was an attempt to add scientific rigor to the testing of Floortime autism treatment. Recently, the Canadian Broadcasting Corporation (CBC) showcased Floortime Therapy and the purported science supporting the therapy.
I watched with great interest as a professor from York University was interviewed regarding this so-called “break through” in autism treatment. I took down the name of the researcher and started to look for the peer-reviewed journal article created by this researcher from a legitimate university. I couldn’t find a 2012 study, so I wrote to the research center and they kindly sent me the latest article, which was actually a 2011 article that I had already read. In the 2011 study I received, there was no report of the brain scans that were highlighted in the CBC news clip. When I contacted the research center, I was told that the information on the brain scans had not yet been published.
Since there has been so much publicity regarding this latest article, I’ve decided to present a short analysis on the 2011 Floortime study conducted by Casenhiser, Shanker and Stieben.
The article’s strengths:
- They recruit fifty-one children for their study, which is a relatively large number in autism research.
- There are two groups of children (an experimental and control group).
- They attempt to randomly assign children so that both groups would be similar prior to the treatment being administered.
- The authors very honestly describe the limitations of the study, instead of attempting to hide them (which is so often the case in autism treatment research).
The article’s weaknesses as described by the researchers involved in the study:
- The control group receives a large number of different treatments in a completely uncontrolled fashion.
- The experimental group receives more hours of treatment than the control group (which is, in my view, a fatal flaw since the variable “intensity” is not controlled).
- There is no I.Q. testing conducted prior to and after the study. I define this as a major flaw since it is crucial to understand whether or not treatment would affect the cognitive skills of a child with a developmental delay or disorder.
- There is a severe self-selection bias, not only regarding which families sign up for the study but more importantly, which children drop out of the study to gain access to a 20-30 hour a week government program (13 children from the control group and 9 children from the experimental group). Even the authors understand how problematic this is when they state: “The authors, therefore, caution against drawing the conclusion that a 20 hours per week program (such as the Intensive Behavioral Intervention program funded by the government of Ontario) can be easily replaced with a 2 hours per week program without regard for how well the requirements of the program fit the needs and resources of each family)” p. 18
Additional Weaknesses:
- The researchers in the Learning Through Interaction in Children with Autism 2011 study use the wrong control group; they need to compare Floortime with a control group that is receiving what is considered “best practices” for autism, which is currently Intensive Behavioral Treatment.
- In this study, children were not diagnosed with autism by a specific psychologist with expertise in autism. Researchers rely on diagnoses made prior to the study from a heterogeneous group of clinicians. This is a severe flaw because we do not know the quality and accuracy of those diagnoses. Since autism is a spectrum disorder, one clinician’s Asperger Syndrome diagnosis may be equal to another clinician’s Autism diagnosis.
- Tools used to measure improvements in the study were developed by the original proponents of the therapy. Using subjective measures to indicate whether a treatment is successful is forbidden in science. The tools used to discern improvement must be independently developed and tested prior to their use in an experiment. There was only one objective measure developed from the field of Speech and Language Pathology. There must be more objective measures in general, and from the area of Speech and Language specifically (and even this one objective measure did not yield a difference between the experimental and control group).
The central weakness of the 2011 study:
- Due to an attrition rate of 43% of the children from the study, we have no way of knowing whether the more severe children left the study to be provided Intensive Behavioral Treatment. It has been my observation over the years that parents of children whose autism is more severe tend to gravitate towards programs that are highly behavioral in nature, since such programs tend to provide better results more quickly. Did the abandonment of the Floortime study by these parents result in a biased group of mildly affected children remaining in the Floortime study? We don’t know; however, we do know that this study has so many limitations that it provides no evidence whatsoever that Floortime Therapy is effective. The fact that almost half of the subjects at the beginning of the study were not there at the end, should disqualify the entire effort for any serious scientist or public policy official.
Bottom Line: Based on the studies that have been conducted to this point on Floortime, there is no evidence to suggest that Floortime is an effective treatment for autism.
We eagerly await the solid evidence!
An Autism Treatment Mirage Arrives from the Desert
11/04/12 13:03
Here’s the justification given for using camel’s milk to treat autism: There is a theory that autism may be caused by some type of inflammation. Camel’s milk is thought, by some, to have an ameliorative effect for symptoms of autism by reducing inflammation. So why not give camel’s milk to children with autism?
Here’s why:
1) There are no controlled studies published in peer-reviewed journals that support camel’s milk as a treatment for autism.
2) Camel’s milk can be dangerous due to the fact that:
- the milk is raw.
- it comes from animals that can harbor TB and E-coli.
- milking techniques are often unhygienic.
- it’s difficult to get milk to market safely due to lack of refrigeration in areas where most people raise camels, i.e., from desert nomads.
3) This so-called treatment has very compelling testimonials given by highly motivated parents, supported by purveyors of camel’s milk who don’t seem to be disturbed about the lack of science behind this purported treatment. Uncontrolled parental observations of their children’s behavior after having been given camel’s milk, is all there is to support parents’ belief that camel milk is improving their children’s symptoms of autism.
Does camel’s milk treat what ails kids with autism? Who knows, but until there is some science-based evidence as to measurable benefit, we need to categorize this latest theory as untested at best, and potentially dangerous at worst.
The proponents of camel’s milk (and there are a few) need to show us the data that supports their claims of efficacy. Until such time, Camel’s Milk Treatment remains filed under quackery.
Memo to Huffington Post: autism treatment is about kids, not parents
10/04/12 19:10
In recognition of Autism Awareness month, the Huffington Post printed an article called 10 Things To Do After an Autism Diagnosis. The author -- Hannah Brown -- gives advice to parents on what they should do after the autism diagnosis bombshell is dropped on them. Although I applaud the helpful sentiment, ninety percent of the advice given by Brown was to parents about their own mental health and coping mechanisms and not about how to help their child.
To illustrate, although taking valium may help a parent cope, and making sure that one’s name is on all joint assets may be helpful in the event a spouse leaves the relationship, these things do nothing for the child. However, if the parent takes effective steps to improve their child’s situation, valium will be needed less and the marriage will likely be more harmonious. Life would be less stressful and something that together, as a team, the family unit can better withstand. Here are my “10 Things to Do After the Diagnosis”:
1) Find a parent group in your area that supports science-based treatment which is, currently, Early Intensive Behavioral Treatment (EIBI) based on the principles of Applied Behavior Analysis (ABA).
2) Join the Me-List on FACEBOOK and the Me-List on Yahoo. Both these groups are comprised of parents worldwide who have treatment teams up and running.
3) Find out if you live in a region where insurance companies are required to provide coverage for EIBI autism treatment. Find how parents in your region are funding their children’s treatment programs.
4) Source a list of Behavioral Consultants in your region with expertise in EIBI. If you don’t have any local expertise, here are a few national companies.
5) Phone the Behavioral Consultants you find and have them provide three references from parents who use their services. If they won’t give you references, go to the next consultant on your list. There is a certification board for this group of professionals and you can find them in your search, via zip code; however, make sure that their expertise is autism.
6) Once you hire the Behavioral Consultant, start recruiting for your treatment team.
7) Set up a training session for your team and start your program. The first couple of weeks are somewhat of a shock, but then you’ll get into a routine.
8) Start reading the right books. I have a list on the Autism Pundit bookshelf.
9) Sign-up for the Association for Science in Autism Treatment’s Newsletter and get savvy about how to differentiate science from quackery!
10) Breathe. If you follow the above steps, your child will reach his or her potential, and you have no idea how great that potential may be!
As a parent who has been in the autism universe for over two decades, I’m of the view that these steps are going to get you where you need to go. For now, ignore all the other noise out there. Your job is to get your child into a treatment program A.S.A.P. Nothing else will matter until your child has access to high quality treatment.
To illustrate, although taking valium may help a parent cope, and making sure that one’s name is on all joint assets may be helpful in the event a spouse leaves the relationship, these things do nothing for the child. However, if the parent takes effective steps to improve their child’s situation, valium will be needed less and the marriage will likely be more harmonious. Life would be less stressful and something that together, as a team, the family unit can better withstand. Here are my “10 Things to Do After the Diagnosis”:
1) Find a parent group in your area that supports science-based treatment which is, currently, Early Intensive Behavioral Treatment (EIBI) based on the principles of Applied Behavior Analysis (ABA).
2) Join the Me-List on FACEBOOK and the Me-List on Yahoo. Both these groups are comprised of parents worldwide who have treatment teams up and running.
3) Find out if you live in a region where insurance companies are required to provide coverage for EIBI autism treatment. Find how parents in your region are funding their children’s treatment programs.
4) Source a list of Behavioral Consultants in your region with expertise in EIBI. If you don’t have any local expertise, here are a few national companies.
5) Phone the Behavioral Consultants you find and have them provide three references from parents who use their services. If they won’t give you references, go to the next consultant on your list. There is a certification board for this group of professionals and you can find them in your search, via zip code; however, make sure that their expertise is autism.
6) Once you hire the Behavioral Consultant, start recruiting for your treatment team.
7) Set up a training session for your team and start your program. The first couple of weeks are somewhat of a shock, but then you’ll get into a routine.
8) Start reading the right books. I have a list on the Autism Pundit bookshelf.
9) Sign-up for the Association for Science in Autism Treatment’s Newsletter and get savvy about how to differentiate science from quackery!
10) Breathe. If you follow the above steps, your child will reach his or her potential, and you have no idea how great that potential may be!
As a parent who has been in the autism universe for over two decades, I’m of the view that these steps are going to get you where you need to go. For now, ignore all the other noise out there. Your job is to get your child into a treatment program A.S.A.P. Nothing else will matter until your child has access to high quality treatment.
News flash! Mom's of autistic kids make less money!
04/04/12 13:38
Hello! Tell us something we don’t know. The first time I read about the amazing epiphany that a cutting edge researcher came up with regarding the under productive nature of the mother of a child with autism, my spouse and I had a good chuckle.
It’s 14 years later and this “new” breakthrough, published in the Journal Pediatrics in 2012, has just been reported around the world by Reuters News. In 1998, researchers noted that women with disabled children were disproportionately employed part-time. In 2012, it was reported that mothers of children with autism earn 56% less than those without a disabled child, they are employed less, and when employed, work 7 hours a week less than mothers of non-disabled children.
Don’t you think it’s time to solve this problem instead of rediscovering it with ever increasing precision over the years? Any parent of a children afflicted with autism can give you a content analysis of their day. It’s full of managing crises, coordinating schedules, managing treatment teams, and completing paperwork. Added to this is the daunting task of functioning as the child’s rights advocate, in seemingly endless struggles with government functionaries in educational, medical, social welfare and legal departments.
The Solution? It’s easy to say, but hard to achieve. The sooner parents of children with autism have access to high quality treatment and education for their child from the moment of diagnosis to adulthood, and humane living arrangements for their adult disabled children, the sooner parents will be able to concentrate more energy on their careers instead of disproportionate effort on their child’s well-being and equal access to services and education. Until such time, be prepared to see more of these “groundbreaking”research articles that measure yet another aspect of human misery.
It’s 14 years later and this “new” breakthrough, published in the Journal Pediatrics in 2012, has just been reported around the world by Reuters News. In 1998, researchers noted that women with disabled children were disproportionately employed part-time. In 2012, it was reported that mothers of children with autism earn 56% less than those without a disabled child, they are employed less, and when employed, work 7 hours a week less than mothers of non-disabled children.
Don’t you think it’s time to solve this problem instead of rediscovering it with ever increasing precision over the years? Any parent of a children afflicted with autism can give you a content analysis of their day. It’s full of managing crises, coordinating schedules, managing treatment teams, and completing paperwork. Added to this is the daunting task of functioning as the child’s rights advocate, in seemingly endless struggles with government functionaries in educational, medical, social welfare and legal departments.
The Solution? It’s easy to say, but hard to achieve. The sooner parents of children with autism have access to high quality treatment and education for their child from the moment of diagnosis to adulthood, and humane living arrangements for their adult disabled children, the sooner parents will be able to concentrate more energy on their careers instead of disproportionate effort on their child’s well-being and equal access to services and education. Until such time, be prepared to see more of these “groundbreaking”research articles that measure yet another aspect of human misery.
Canada needs YOU ... unless your kid has autism.
29/03/12 11:43
The Canadian Government just announced that it is funding a Research Chair in Autism Spectrum Disorders! The news release indicates they are looking to attract autism research talent. The release states:
“Investigators working in Canada and those willing to relocate to a Canadian research institution are eligible for the Chair... The Chair’s application form is available on [Canadian Institutes of Health Research] CIHR’s website.”
Bright autism talent is being invited to Canada! That sounds great, until we learn that the immigration side of Canada’s vast bureaucracy excludes foreign researchers that happen to have a child with autism.
You hear that right.
The same week that the new autism research chair was announced by one hand of Canada’s government, the other hand invokes its policy of autism discrimination, wherein a professor of psychology is being denied Canadian citizenship because his child has a diagnosis of autism. The professor, Dr. Jeffrey Niehaus, now has no choice but to leave the University of Victoria, to return to the United States, and relocate to a university in Virginia.
The link below has the video news clip of outrageous Canadian immigration bigotry.
“Investigators working in Canada and those willing to relocate to a Canadian research institution are eligible for the Chair... The Chair’s application form is available on [Canadian Institutes of Health Research] CIHR’s website.”
Bright autism talent is being invited to Canada! That sounds great, until we learn that the immigration side of Canada’s vast bureaucracy excludes foreign researchers that happen to have a child with autism.
You hear that right.
The same week that the new autism research chair was announced by one hand of Canada’s government, the other hand invokes its policy of autism discrimination, wherein a professor of psychology is being denied Canadian citizenship because his child has a diagnosis of autism. The professor, Dr. Jeffrey Niehaus, now has no choice but to leave the University of Victoria, to return to the United States, and relocate to a university in Virginia.
The link below has the video news clip of outrageous Canadian immigration bigotry.
The irony of trumpeting a research position in autism that cannot be filled by a parent of a child with autism is not only bizarre, but also a profound affront to the basic decency of Canadians. Clearly, people with disabilities continue to be third class citizens in a country that prides itself on fairness and kindness.
Once again, hypocrisy, thy name is Canada.
Groundhog Day the Movie, Extended Autism Edition
15/03/12 15:32
Every morning, I arrive at my computer hoping to read something new and hopefully uplifting about autism. More often than not, recurring themes play out day after day, year after year. Perhaps this is one of the side effects of being introduced to the world of autism over twenty years ago.
Unfortunately, the tragedies seem to never end. The most common and horrendous is where a parent takes their life and the life of their autistic child because they’d rather be dead than continue with the unbearable nature of this life. Last week was no exception. The latest autism related suicide/murder occurred in the San Francisco Bay Area.
At about the same time, a typical media feel-good story was publicized, this time about Savantism. Most often the type of talent showcased is music. In this case, it was about a singer with autism. We’re all supposed to suddenly feel good that this one person’s talents have finally been recognized. Although the singer should be applauded, it is troubling that it takes so long for those around him to recognize his skills and work with him on developing them further. He was three years old when he was diagnosed with autism. How could it have possibly taken 23 years to recognize his abilities?
The next popular news story typically concerns a high functioning person with autism (who actually may have Asperger’s Syndrome) being showcased as a representative for all people with autism. Last week, the representative with autism media chose to highlight is Dr. Temple Grandin. She is once again in the news, giving insight from her life to parents of children with autism. Whether a person who is as accomplished as Dr. Grandin can accurately represent all people with autism is never questioned, since that would be unseemly; however, it is always in the minds of parents whose children are severely afflicted with the disorder, insofar as their child is light years apart from a Dr. Grandin level of functioning.
Another theme that is endlessly rehashed with every newly minted media reporter is the “blame the parent” theory. There are several varieties of this meme. The theories morph from blame the mother, to blame the father, to finally blame the pair-bonding process wherein parents of children with autism apparently self-select each other and thereby create children with autism. Although these tired theories continue to bore us as they are introduced anew, they always remain offensive in nature, with each new crop of reporters that resurrect them.
A relatively recent autism theme that is introduced repeatedly, seemingly week after week, is autism segregation under the banner of compassion. The latest story is about special religious services for children who are too disruptive to attend regular services. We’re all supposed to feel warm and fuzzy about this segregation rather than incensed that 1) our community cannot be more tolerant of disability and accommodative, and 2) that no one is working with these kids to teach them the skills they need to be able to attend a regular service.
It would be great to wake up one fine morning and read about a genuine breakthrough in autism treatment, or even a scientifically backed cure! It would be wonderful to never hear of another autism murder/suicide or more pap from green horn reporters about “newly discovered” discredited therapies, but I don’t hold my breath. We parents of children with autism are seemingly forever in Groundhog Day the Movie, Extended Autism Edition.
Unfortunately, the tragedies seem to never end. The most common and horrendous is where a parent takes their life and the life of their autistic child because they’d rather be dead than continue with the unbearable nature of this life. Last week was no exception. The latest autism related suicide/murder occurred in the San Francisco Bay Area.
At about the same time, a typical media feel-good story was publicized, this time about Savantism. Most often the type of talent showcased is music. In this case, it was about a singer with autism. We’re all supposed to suddenly feel good that this one person’s talents have finally been recognized. Although the singer should be applauded, it is troubling that it takes so long for those around him to recognize his skills and work with him on developing them further. He was three years old when he was diagnosed with autism. How could it have possibly taken 23 years to recognize his abilities?
The next popular news story typically concerns a high functioning person with autism (who actually may have Asperger’s Syndrome) being showcased as a representative for all people with autism. Last week, the representative with autism media chose to highlight is Dr. Temple Grandin. She is once again in the news, giving insight from her life to parents of children with autism. Whether a person who is as accomplished as Dr. Grandin can accurately represent all people with autism is never questioned, since that would be unseemly; however, it is always in the minds of parents whose children are severely afflicted with the disorder, insofar as their child is light years apart from a Dr. Grandin level of functioning.
Another theme that is endlessly rehashed with every newly minted media reporter is the “blame the parent” theory. There are several varieties of this meme. The theories morph from blame the mother, to blame the father, to finally blame the pair-bonding process wherein parents of children with autism apparently self-select each other and thereby create children with autism. Although these tired theories continue to bore us as they are introduced anew, they always remain offensive in nature, with each new crop of reporters that resurrect them.
A relatively recent autism theme that is introduced repeatedly, seemingly week after week, is autism segregation under the banner of compassion. The latest story is about special religious services for children who are too disruptive to attend regular services. We’re all supposed to feel warm and fuzzy about this segregation rather than incensed that 1) our community cannot be more tolerant of disability and accommodative, and 2) that no one is working with these kids to teach them the skills they need to be able to attend a regular service.
It would be great to wake up one fine morning and read about a genuine breakthrough in autism treatment, or even a scientifically backed cure! It would be wonderful to never hear of another autism murder/suicide or more pap from green horn reporters about “newly discovered” discredited therapies, but I don’t hold my breath. We parents of children with autism are seemingly forever in Groundhog Day the Movie, Extended Autism Edition.
Your Child’s Autism is Not a Theory!
02/03/12 09:30
TV3 Ireland AM recently interviewed an autism “expert,” a clinical psychologist, Tony Humphreys, who made a comment about autism, saying the disorder is “a theory.” So now your kid’s a theory. How about that? Chalk this up to another misunderstanding into which a naïve, clinical psychologist fell! Will these professionals ever learn that parents of children with autism are a prickly bunch? Understandably, parents are outraged at his comments. It is hard enough living with a child with autism, fighting for that child’s rights to treatment and education, and bankrupting the family for the child’s treatment. What’s impossible to then bear is for some so-called expert to come along and deny your child’s debilitating condition by calling it a theory!
It also doesn’t help that this psychologist’s case dredges up the “lack of love” angle as a cause of autism (which reminds us all of the infamous Refrigerator Mother Theory, the less well-known Detached Father Theory and finally, the sophisticated Assortative Mating Theory). Despite this debacle, which was sufficiently controversial that the Irish Examiner actually pulled the article, a couple of points do need to be made.
Autism is definitely real; however, the causes of autism are not yet well known. Much good research is being conducted and many theories as to the causes of autism are being researched. Unfortunately, we do not yet know how to measure autism biologically. We can neither count blood cells nor measure proteins to determine whether or not a child has autism. The diagnoses are always behavioral, which is not adequate, but that’s all we currently have. One day, though, we will actually know the causes of autism. In the same way we know “fever” is a symptom of underlying disease rather than a diagnosis on its own, autism may similarly be a symptom of one or more conditions.
For parents of children with autism, this difference may be no more than semantics, despite the fact that researchers will be gratified after years of research. The term autism may eventually come to describe a group of symptoms, but when your child needs help, does it really matter? Let the Irish Examiner experience be a cautionary tale for the next autism expert who wades into autism’s very deep waters.
It also doesn’t help that this psychologist’s case dredges up the “lack of love” angle as a cause of autism (which reminds us all of the infamous Refrigerator Mother Theory, the less well-known Detached Father Theory and finally, the sophisticated Assortative Mating Theory). Despite this debacle, which was sufficiently controversial that the Irish Examiner actually pulled the article, a couple of points do need to be made.
Autism is definitely real; however, the causes of autism are not yet well known. Much good research is being conducted and many theories as to the causes of autism are being researched. Unfortunately, we do not yet know how to measure autism biologically. We can neither count blood cells nor measure proteins to determine whether or not a child has autism. The diagnoses are always behavioral, which is not adequate, but that’s all we currently have. One day, though, we will actually know the causes of autism. In the same way we know “fever” is a symptom of underlying disease rather than a diagnosis on its own, autism may similarly be a symptom of one or more conditions.
For parents of children with autism, this difference may be no more than semantics, despite the fact that researchers will be gratified after years of research. The term autism may eventually come to describe a group of symptoms, but when your child needs help, does it really matter? Let the Irish Examiner experience be a cautionary tale for the next autism expert who wades into autism’s very deep waters.
Parents as autism therapists - a morally bankrupt policy!
28/02/12 18:45
This week I read yet another article where government attempts to ration health care for children with autism. When will there be a generally accepted expectation in society that children with autism actually have the right to receive professional treatment for their affliction?
The bogus legitimacy given to the “parent as therapist” model has been around for a long time. The logical allure for government is to have policy makers conscript free parent labor as this saves governments and health insurance companies money. Savvy parents have understood this dynamic and have fought to have professionalism brought to autism treatment. Many have insisted on the use of board certified behaviorists with expertise in autism.
In the case of the parents referenced in the article, the government efforts have met with success. Parents have completed a course that the reporter calls “innovative” because parents of children with autism can graduate with a course certificate after having been taught by a nurse with only a minimal background in behaviorism! The fact that these parents are so thrilled with a course that teaches them very basic tools to deal with their children with autism is disturbing since that means that they are getting no professional treatment for their child’s condition. Imagine if parents of children with cancer took classes from nurses on how to treat their child’s cancer! This would be considered scandalous, but where autism is concerned, the children of a lesser god can be denied professional care, be offered “good enough” and reporters cheer! Parents, your children deserve better!
The bogus legitimacy given to the “parent as therapist” model has been around for a long time. The logical allure for government is to have policy makers conscript free parent labor as this saves governments and health insurance companies money. Savvy parents have understood this dynamic and have fought to have professionalism brought to autism treatment. Many have insisted on the use of board certified behaviorists with expertise in autism.
In the case of the parents referenced in the article, the government efforts have met with success. Parents have completed a course that the reporter calls “innovative” because parents of children with autism can graduate with a course certificate after having been taught by a nurse with only a minimal background in behaviorism! The fact that these parents are so thrilled with a course that teaches them very basic tools to deal with their children with autism is disturbing since that means that they are getting no professional treatment for their child’s condition. Imagine if parents of children with cancer took classes from nurses on how to treat their child’s cancer! This would be considered scandalous, but where autism is concerned, the children of a lesser god can be denied professional care, be offered “good enough” and reporters cheer! Parents, your children deserve better!
How To Skate Around Discrimination
21/02/12 11:09
I just read about the latest battles of a family that successfully integrated a child into skating lessons. This story transported me back in time to when I had to convince various teachers that having a child with a “helper” is the best way to successfully integrate my child into an activity.
I can’t believe that I’m still reading about the same issue twenty years later! In this article, the parents were savvy. They quickly went over the head of the luddite who has no concept of the term “accommodation” and called the media. In this case, the media did their job and put pressure on the mayor, who immediately realized that this flawed policy must be changed. Kudos to those smart parents who leveraged the media to change a policy that is going to help every child with special needs who follows. I’ve written in the past on how to address this problem in a non-confrontational manner; however, since this pattern keeps rhyming, it is worth revisiting the issue.
Based on the lessons learned from this news story, here are the following steps you may consider taking when you sniff a potential problem when integrating your child: first, approach the person in charge of registration and with a very energetic, positive demeanor say that you’d love to have your child learn how to skate (swim, dance or whatever); however, due to your child’s special needs, you have a shadow aide, or helper, to provide free of charge to the class to support your child. You may want to add that this person knows your child quite well and will only jump in when your child has a problem understanding the directions given by the instructor.
One of two things will happen: the manager will say yes, or no.
If you are given permission, congratulations! If the manager is amenable (and you feel comfortable), then you may add that it would be less stigmatizing for the child if the helper could wear a T-shirt with the name of the rink on it, and thereby keep the children and parents guessing regarding who this second adult is in class. Your child’s shadow will simply look like a regular volunteer, not necessarily there for your child.
If the manager declines, then it is time for step two: phone your local paper and set up an interview about how the publicly funded recreation center is discriminating against a disabled child. If the reporter is not seasoned enough to interview the mayor, you might want to suggest it. In addition, if you are lucky enough to live in a country with laws protecting your child, you may want to mention those laws to the reporter. If you want to make the rubble bounce, it may be useful to send the reporter a link to the website with those laws, and copy and paste the specific part of the law into the body of the e-mail. If you are not lucky enough to have those laws at your fingertips, another idea is to contact all the various disability groups and mention that it may be a good idea for them to contact the reporter and their politicians. The pressure put on these folks will generally be too much to handle and accommodations will be made.
Ironically, once you succeed in integrating your child and they realize that life as we know it did not end, the recreation center will celebrate its success in being so open-minded and progressive! Let them own your victory; that will help the next child in line, and that child’s parent who will have no clue that the reason it was so easy to include a shadow teacher is because of a bloody minded parent who preceded them.
Here’s to bloody-minded parents!
I can’t believe that I’m still reading about the same issue twenty years later! In this article, the parents were savvy. They quickly went over the head of the luddite who has no concept of the term “accommodation” and called the media. In this case, the media did their job and put pressure on the mayor, who immediately realized that this flawed policy must be changed. Kudos to those smart parents who leveraged the media to change a policy that is going to help every child with special needs who follows. I’ve written in the past on how to address this problem in a non-confrontational manner; however, since this pattern keeps rhyming, it is worth revisiting the issue.
Based on the lessons learned from this news story, here are the following steps you may consider taking when you sniff a potential problem when integrating your child: first, approach the person in charge of registration and with a very energetic, positive demeanor say that you’d love to have your child learn how to skate (swim, dance or whatever); however, due to your child’s special needs, you have a shadow aide, or helper, to provide free of charge to the class to support your child. You may want to add that this person knows your child quite well and will only jump in when your child has a problem understanding the directions given by the instructor.
One of two things will happen: the manager will say yes, or no.
If you are given permission, congratulations! If the manager is amenable (and you feel comfortable), then you may add that it would be less stigmatizing for the child if the helper could wear a T-shirt with the name of the rink on it, and thereby keep the children and parents guessing regarding who this second adult is in class. Your child’s shadow will simply look like a regular volunteer, not necessarily there for your child.
If the manager declines, then it is time for step two: phone your local paper and set up an interview about how the publicly funded recreation center is discriminating against a disabled child. If the reporter is not seasoned enough to interview the mayor, you might want to suggest it. In addition, if you are lucky enough to live in a country with laws protecting your child, you may want to mention those laws to the reporter. If you want to make the rubble bounce, it may be useful to send the reporter a link to the website with those laws, and copy and paste the specific part of the law into the body of the e-mail. If you are not lucky enough to have those laws at your fingertips, another idea is to contact all the various disability groups and mention that it may be a good idea for them to contact the reporter and their politicians. The pressure put on these folks will generally be too much to handle and accommodations will be made.
Ironically, once you succeed in integrating your child and they realize that life as we know it did not end, the recreation center will celebrate its success in being so open-minded and progressive! Let them own your victory; that will help the next child in line, and that child’s parent who will have no clue that the reason it was so easy to include a shadow teacher is because of a bloody minded parent who preceded them.
Here’s to bloody-minded parents!
Updating Autism Treatment Tools, One App at a Time
14/02/12 11:03
Why is it that even the most basic concepts are misunderstood in the field of autism intervention? I can understand why the media can’t get it right, but I am always surprised when Autism Speaks can’t get it right!
As I mentioned previously, for most of us it is obvious that the Apps designed for an iPad are not stand alone therapies! The Ipad is simply a better way for children to access what they were already using. It’s analogous to a typist switching from an IBM Selectric to a computer which is faster and, therefore, much more efficient.
Let’s take a few examples: in the case of the iPad, if a child is accustomed to using icons, and now the icons are on the iPad instead of velcroed onto a bulky-looking sheet of paper in a three ring binder, the icons may be more effective since they are faster to use; however, the basic idea is the same (with the improvement that the child is not stigmatized by a big, clunky, binder). Another example: if a teacher uses the iPad to have the child trace letters with his finger rather than on a sheet of paper, that is certainly more efficient; the teacher is simply using new technology on tried and tested old techniques. A final example is teaching using flashcards: the iPad may have a bigger, better, more vibrant library of flash cards that can be used to teach labels; however, it is still the science-based, discrete trial training that is being used to work with the child on labels.
The iPad, used properly, is a godsend for children with autism! Autism Speaks shouldn’t worry: we parents are certainly smart enough to figure this one out!
As I mentioned previously, for most of us it is obvious that the Apps designed for an iPad are not stand alone therapies! The Ipad is simply a better way for children to access what they were already using. It’s analogous to a typist switching from an IBM Selectric to a computer which is faster and, therefore, much more efficient.
Let’s take a few examples: in the case of the iPad, if a child is accustomed to using icons, and now the icons are on the iPad instead of velcroed onto a bulky-looking sheet of paper in a three ring binder, the icons may be more effective since they are faster to use; however, the basic idea is the same (with the improvement that the child is not stigmatized by a big, clunky, binder). Another example: if a teacher uses the iPad to have the child trace letters with his finger rather than on a sheet of paper, that is certainly more efficient; the teacher is simply using new technology on tried and tested old techniques. A final example is teaching using flashcards: the iPad may have a bigger, better, more vibrant library of flash cards that can be used to teach labels; however, it is still the science-based, discrete trial training that is being used to work with the child on labels.
The iPad, used properly, is a godsend for children with autism! Autism Speaks shouldn’t worry: we parents are certainly smart enough to figure this one out!
Finding Religion to End Run Autism Education Discrimination
10/02/12 17:32
Isn’t it grand when the public school system successfully mainstreams children with autism. When everyone works together and makes the child with autism a valued member of the classroom, it’s truly wonderful!
What happens, though, when this is not the reality? Parents have three choices: 1) they can accept the sub-standard educational experience offered to their child and live with this depressing reality for 13 years, 2) they can fight the system, getting the lawyers to communicate in a way that makes the school do the right thing (often mortgaging their house to pay for the fight), or 3) they can place their child in private school.
Here’s where religion comes in. When shopping for a private school, it may be wise to “find religion” because your odds of finding a private school that will actually take your child increases once you add parochial schools to the mix! In addition, many religious private schools are not as expensive since they are often subsidized by members of the associated congregation. An additional benefit is that your child becomes a member of a peer group that is being taught kindness and inclusion for special needs children as part of religious teachings.
Not all religious school administrators are equally open-minded; however, you can visit a number of parochial schools until you meet a religious leader who is sufficiently pious to do the right thing. The advantage of a private school is that you are the customer and, therefore, the school has more incentive and flexibility to meet the needs of your child.
Sometimes it’s worth fighting the powers that be to make sure your child has access to the neighborhood school and, therefore, the neighborhood kids; however, sometimes the battle may be too painful, onerous or impossible to win. When the battle against intransigent public schools hits the wall, it may be time to find a welcoming religious community to provide your child with a viable alternative.
What happens, though, when this is not the reality? Parents have three choices: 1) they can accept the sub-standard educational experience offered to their child and live with this depressing reality for 13 years, 2) they can fight the system, getting the lawyers to communicate in a way that makes the school do the right thing (often mortgaging their house to pay for the fight), or 3) they can place their child in private school.
Here’s where religion comes in. When shopping for a private school, it may be wise to “find religion” because your odds of finding a private school that will actually take your child increases once you add parochial schools to the mix! In addition, many religious private schools are not as expensive since they are often subsidized by members of the associated congregation. An additional benefit is that your child becomes a member of a peer group that is being taught kindness and inclusion for special needs children as part of religious teachings.
Not all religious school administrators are equally open-minded; however, you can visit a number of parochial schools until you meet a religious leader who is sufficiently pious to do the right thing. The advantage of a private school is that you are the customer and, therefore, the school has more incentive and flexibility to meet the needs of your child.
Sometimes it’s worth fighting the powers that be to make sure your child has access to the neighborhood school and, therefore, the neighborhood kids; however, sometimes the battle may be too painful, onerous or impossible to win. When the battle against intransigent public schools hits the wall, it may be time to find a welcoming religious community to provide your child with a viable alternative.
We Parents Need to Improve our Chess Game
02/02/12 14:51
In the past decade, there has been a concerted effort on the part of many parents to make sure that autism and Asperger’s syndrome are differentiated as two distinct diagnoses.
Separating autism from Asperger’s syndrome has been important for several reasons:
- the needs of these two groups vary considerably,
- people with Asperger’s syndrome should not be stigmatized with autism, which is a much more debilitating condition,
- people with Asperger’s syndrome should not feel that they have license to speak for people with autism, &
- it harms people with autism to be considered the same as those with Asperger’s syndrome because, generally, they need much more in the way of treatment, support and supervision.
Opponents to the amalgamation of the two diagnoses say that it is meaningless to differentiate between the two categories because some high functioning adults with autism appear identical to adults with Asperger’s syndrome.
I have always thought that this was a function of effective autism intervention and look at this “problem” as success! I am prepared to live with the concept that great intervention may lead to a change in diagnosis.
In addition, many parents of children with Asperger’s syndrome were worried that differentiation in the Autism Spectrum Disorder may possibly lead to a decrease in services for their children. I understand the sentiment and know that those who fund treatment are generally very quick to pull funding whenever they can; however, I’ve always thought that this path ultimately harms all children with autism spectrum disorder.
Now we see it happening. By eliminating the Asperger’s syndrome diagnosis through its supposed amalgamation into autism, not only have people with Asperger’s syndrome been denied their own diagnosis, but also many people with autism are without a clearly defined diagnosis even though they still have autism.
In other words, the powers that be have just put our children’s future in jeopardy. The question is can we get out of trouble, or will we be outmaneuvered?
Chalk one up for the good guys!
31/01/12 18:48
The Internet is abuzz with the latest film on autism to come out of France. This film tips the “pomme” cart, and I say “Bravo”! The film is called: “The Wall; Psychoanalysis put to the test for autism.” It is a must watch film. I suggest you do it quickly before it’s forcibly removed from the Internet. This film has been banned by a French court, hard as that may be for a non-European audience to comprehend. The filmmaker is appealing the ruling.
Decades after the debunking of the theory that mothers cause their child’s autism, first posited by Bruno Bettleheim and embraced by the field of psychoanalysis, the insular French psychiatric community is still flogging the dead horse, with an incomprehensible disregard to the scientific advances that have been made in the rest of the world over the past 60 years. Quantitative data collection seems to be utterly irrelevant for these folks; however, with the growing popularity and reach of the Internet, parents in France have learned the basics. They’ve got us beat when it comes to food, perfume, fashion and pretty much all the finer things in life, but when it comes to autism treatment, well… not so much!
Francophone parents with autism have been historically so isolated in terms of up-to-date materials that I actually had my book, Teach Me Language, translated into French as Apprends-moi le langage, because I had so many requests from French speaking parents and speech language pathologists. I also felt that it was a tremendous injustice that children in the Francophone world had been left to the mercy of the psychoanalysts for so-called “treatment.”
I was delighted to read about a film comparing the backward, flat-earth type, psycho-analytic approach to autism intervention with the science-based approaches we’re accustomed to in the U.S. and Canada. The courage of this documentary filmmaker, Sophie Robert, is remarkable. She is standing up to the powerful French psycho-analytic community. The psychoanalysts were given almost the entire film to describe their dubious theories, and now three of them have the gall to sue the film maker because they claim that they have been misrepresented!
This is a real test for France: is the nation truly a republic with an independent judiciary that will consider science and data, or will they be intimidated by the powerful psycho-analytic traditionalists who’ve had free reign over children with autism since the term autism was coined. Filmmaker Sophie Robert has done something important for the community of parents of children with autism worldwide. We need to support her.
The widely known “Secret” is being tested… Finally!
26/01/12 09:34
For the past 20 years, parents of children with autism have been informally using melatonin to mitigate their children’s vexing sleep problems. A great side benefit to melatonin is that finally parents can get some sleep. Since a full night’s sleep is so precious and a majority of children with autism have disrupted sleep, some parents have become quite zealous in their support for this supplement. Many parents anecdotally report that their children, at long last, start to sleep through the night with the use of melatonin.
Those of us who believe in the scientific method, feel somewhat sheepish in recommending melatonin since it has never been tested properly on children with autism for sleep. The hormone melatonin is not proprietary; therefore, historically no drug company has had an incentive to do clinical trials. In addition, the anecdotes have been mixed. Melatonin seems to work with some children and not for others. Some parents use the sublingual variety of melatonin (under the tongue) whereas other parents manage to successfully use the time-release capsules, where the child must swallow the entire pill since by crushing it, the time release no longer works. In short, in Melatonin we have had a potential treatment for autism related sleep disorder but no one with an economic incentive to test it properly.
In the past five years, however, researchers have been examining the effect of melatonin on sleep and have reported mixed results. In April 2011, a research article was published reviewing 35 studies that looked at the relationship between melatonin and autism.
Their review found significant improvements in:
Clearly, we need more studies done on the relationship between sleep and melatonin in children afflicted with autism. The effect on night wakenings needs to be replicated in a controlled study to make sure that this observation is correct.
In the meantime, for those parents suffering from serious and prolonged sleep deprivation, it may be worthwhile to have the child’s pediatrician or neurologist read up on melatonin to see whether the supplement is worth exploring for your child. Since the article reviewing 35 studies reported minimal to no side effects for melatonin, it may be worthwhile to try melatonin under the supervision of the child’s health care professional.
Those of us who believe in the scientific method, feel somewhat sheepish in recommending melatonin since it has never been tested properly on children with autism for sleep. The hormone melatonin is not proprietary; therefore, historically no drug company has had an incentive to do clinical trials. In addition, the anecdotes have been mixed. Melatonin seems to work with some children and not for others. Some parents use the sublingual variety of melatonin (under the tongue) whereas other parents manage to successfully use the time-release capsules, where the child must swallow the entire pill since by crushing it, the time release no longer works. In short, in Melatonin we have had a potential treatment for autism related sleep disorder but no one with an economic incentive to test it properly.
In the past five years, however, researchers have been examining the effect of melatonin on sleep and have reported mixed results. In April 2011, a research article was published reviewing 35 studies that looked at the relationship between melatonin and autism.
Their review found significant improvements in:
- Sleep duration. Children with autism slept much longer using melatonin
- Sleep onset. Children with autism went to sleep faster using melatonin
- Night wakening. Researchers did not find a difference in number of night-time wakenings.
Clearly, we need more studies done on the relationship between sleep and melatonin in children afflicted with autism. The effect on night wakenings needs to be replicated in a controlled study to make sure that this observation is correct.
In the meantime, for those parents suffering from serious and prolonged sleep deprivation, it may be worthwhile to have the child’s pediatrician or neurologist read up on melatonin to see whether the supplement is worth exploring for your child. Since the article reviewing 35 studies reported minimal to no side effects for melatonin, it may be worthwhile to try melatonin under the supervision of the child’s health care professional.
Oxytocin and Autism: add another theory with no data to the talley
23/01/12 16:34
Another day and seemingly another opportunity to experiment on children with autism.
Legitimate researchers, conducting a variety of human & primate studies, have reported that those with higher levels of the hormone oxytocin exhibit more affection and pro-social behavior than those with lower levels of the hormone.
From these findings, the article in the Daily Mail, quotes a researcher who suggests: ”oxytocin breaks down normal social barriers.” The headline of this article states: “’Cuddle hormone’ which makes mothers kinder could help treat autism.”
Here’s where the trouble begins! I have nightmarish visions of parents paying money to a fly-by-night clinic to administer the hormone oxytocin to their children in much the same way as parents are flying to Panama to shoot their children up with stem cells! The key here is to wait! Research needs to be conducted, published and replicated on children with autism before we start widely administering oxytocin to kids. Let’s try not to have a replay of the secretin debacle!
Legitimate researchers, conducting a variety of human & primate studies, have reported that those with higher levels of the hormone oxytocin exhibit more affection and pro-social behavior than those with lower levels of the hormone.
From these findings, the article in the Daily Mail, quotes a researcher who suggests: ”oxytocin breaks down normal social barriers.” The headline of this article states: “’Cuddle hormone’ which makes mothers kinder could help treat autism.”
Here’s where the trouble begins! I have nightmarish visions of parents paying money to a fly-by-night clinic to administer the hormone oxytocin to their children in much the same way as parents are flying to Panama to shoot their children up with stem cells! The key here is to wait! Research needs to be conducted, published and replicated on children with autism before we start widely administering oxytocin to kids. Let’s try not to have a replay of the secretin debacle!
Intensive Behavioral Intervention for Autism: The Fight for Coverage
18/01/12 11:23
Allison Dean is a writer bringing to us the latest information on the legal fight for the reform of autism insurance laws to cover Intensive Behavioral Therapies. We welcome her thoughts on this important issue.
Early on, children are rewarded for good behavior with food although this reward is very quickly faded to non-food reinforcers; all throughout therapy, bad behaviors are rewarded with neutral responses.
Intermediate treatment concentrates primarily on:
Advanced treatment concentrate primarily on:
So where is the U.S. in terms of making these therapies not only more available, but mandated for insurance to cover? As of November 1, 2011, the following 29 states have passed autism insurance reform laws according to austismvote.org:
The following 14 states, according to autismvote.org, will pursue autism insurance reform laws in 2012:
And unfortunately, the following states are not pursuing autism insurance reform laws at this time:
The fight for coverage of IBTs is ongoing, but it has been a successful one. If things continue as they have, it is only a matter of time before all states mandate that IBTs be covered by insurance.
With recent medical innovations in both technology and treatments, new therapies have been developed and shown to benefit those children with Autistic Spectrum Disorders. One in particular is Intensive Behavioral Treatments (IBT). The legal fight for children to receive this treatment has been an ongoing one.
But first, what is IBT? IBTs include Applied Behavior Analysis (ABA), Early Intensive Behavioral Intervention (EIBI), and Intensive Behavioral Intervention (IBI). These treatments are exercises and techniques consistently applied to autistic children for several years, for 25 to 40 hours per week; children usually work with a therapist, paraprofessional, parent, or some combination of some or all of said people. However, the involvement of children’s parents throughout the process is imperative to its success.
Beginning treatment concentrates primarily on improving behaviors such as:
General social responses
Self-stimulating behaviors
Socially non-aggressive behaviors
Early on, children are rewarded for good behavior with food although this reward is very quickly faded to non-food reinforcers; all throughout therapy, bad behaviors are rewarded with neutral responses.
Intermediate treatment concentrates primarily on:
Peer interaction.
Teaching children language skills.
Advanced treatment concentrate primarily on:
Observational learning in social settings.
Proper social emotional responses and expression.
The teaching of basic education skills.
So where is the U.S. in terms of making these therapies not only more available, but mandated for insurance to cover? As of November 1, 2011, the following 29 states have passed autism insurance reform laws according to austismvote.org:
Arizona - Enacted March 21, 2008
Arkansas - Enacted March 4, 2011
California - Enacted Oct. 9, 2011
Colorado - Enacted June 2, 2009
Connecticut - Enacted June 9, 2009
Florida - Enacted May 2, 2008
Iowa - Enacted April 29, 2010
Illinois - Enacted December 13, 2008
Indiana - Enacted May 3, 2001
Kansas - Enacted April 19, 2010
Kentucky - Enacted April 14, 2010
Louisiana - Enacted July 2, 2008
Maine - Enacted April 12, 2010
Massachusetts - Enacted August 3, 2010
Missouri - Enacted June 10, 2010
Montana - Enacted May 5, 2009
Nevada - Enacted May 29, 2009
New Hampshire - Enacted July 23, 2010
New Jersey - Enacted August 13, 2009
New Mexico - Enacted April 2, 2009
New York - Enacted Nov. 1, 2011
Pennsylvania - Enacted July 9, 2008
Rhode Island - Enacted June 30, 2011
South Carolina - Enacted June 7, 2007
Texas - Enacted June 15, 2007
Vermont - Enacted May 27, 2010
Virginia - Enacted May 6, 2011
West Virginia - Enacted April 1, 2011
Wisconsin - Enacted October 19, 2009
The following 14 states, according to autismvote.org, will pursue autism insurance reform laws in 2012:
Alabama
Alaska
Delaware
Georgia
Hawaii
Maryland
Michigan
Minnesota
Nebraska
North Carolina
Ohio
Oregon
Utah
Washington
And unfortunately, the following states are not pursuing autism insurance reform laws at this time:
Idaho
Mississippi
North Dakota
Oklahoma
South Dakota
Tennessee
Washington, DC
Wyoming
The fight for coverage of IBTs is ongoing, but it has been a successful one. If things continue as they have, it is only a matter of time before all states mandate that IBTs be covered by insurance.
Allison also writes about medical malpractice on her website, Medical Malpractice Lawyers.
I sure hope autism centers aren't stealth segregation
12/01/12 12:53
Seemingly once a month, the media publicizes yet another autism center breaking ground or opening thanks to a generous grant from somewhere. All this incredible generosity is designed to help children with autism.
At first glance, the concept of an autism center sounds ideal and supportive of children with autism, but we need to ask whether segregated treatment or educational centers are really the best way to go for this population of children. If an autism center is a place to train professionals or have weekly team meetings, I understand the role of the center; however, if an autism center is a place where children are segregated from the population at large at the earliest age, I think we, as a community, are making a huge mistake.
Integration and inclusion are easiest when children with autism are young. My fear is that if we segregate kids when they are young, we may be sealing their fate as segregated middle schoolers, high schoolers and adults. It becomes increasingly difficult to integrate children with autism as they get older, so if we do not start young, we may never begin. Children with autism need to learn typical school patterns when they are in preschool and kindergarten so that by the time they reach fourth grade, they only have to be challenged with the curriculum rather than the potpourri of social and instructional skills that they’ve learned from preschool. If we keep postponing integration, we will inadvertently rob kids with autism of a typical childhood.
Although every child is different, many children can begin integration as preschoolers after six months to a year of intensive treatment. Some children will need a trained aide to accompany them; however, it very often is still the right time to integrate these young children.
If new autism centers are places to guarantee integration, that’s a great use of the generosity of good people; however, if they are gold-plated segregated sites, I fear we are sliding into the bad ole days of systemic segregation.
At first glance, the concept of an autism center sounds ideal and supportive of children with autism, but we need to ask whether segregated treatment or educational centers are really the best way to go for this population of children. If an autism center is a place to train professionals or have weekly team meetings, I understand the role of the center; however, if an autism center is a place where children are segregated from the population at large at the earliest age, I think we, as a community, are making a huge mistake.
Integration and inclusion are easiest when children with autism are young. My fear is that if we segregate kids when they are young, we may be sealing their fate as segregated middle schoolers, high schoolers and adults. It becomes increasingly difficult to integrate children with autism as they get older, so if we do not start young, we may never begin. Children with autism need to learn typical school patterns when they are in preschool and kindergarten so that by the time they reach fourth grade, they only have to be challenged with the curriculum rather than the potpourri of social and instructional skills that they’ve learned from preschool. If we keep postponing integration, we will inadvertently rob kids with autism of a typical childhood.
Although every child is different, many children can begin integration as preschoolers after six months to a year of intensive treatment. Some children will need a trained aide to accompany them; however, it very often is still the right time to integrate these young children.
If new autism centers are places to guarantee integration, that’s a great use of the generosity of good people; however, if they are gold-plated segregated sites, I fear we are sliding into the bad ole days of systemic segregation.
Autism Hero
10/01/12 09:45
Every so often I read about a person who is making a difference. Recently, I read about a professional who is both a pediatric neurologist and a lawyer! What a powerful combination for children with autism.
Dr. Gary McAbee, has created a new medical-legal partnership that specializes in autism, which means that not only is the parent of a newly diagnosed child going to get great advice on how to access treatment, they will also be able to get advice on advocacy for their children in terms of funding rights, treatment access and school placement.
What’s great about this partnership is that Dr. McAbee has created a great marriage: the Legal Services of New Jersey partnered up with a reputable autism treatment organization: Eden Autism Services group. Hopefully this will become a prototype across the nation and beyond, since we parents of children with autism know all too painfully how difficult it is to access quality treatment and once found, how difficult it is to actually afford it!
Dr. Gary McAbee, has created a new medical-legal partnership that specializes in autism, which means that not only is the parent of a newly diagnosed child going to get great advice on how to access treatment, they will also be able to get advice on advocacy for their children in terms of funding rights, treatment access and school placement.
What’s great about this partnership is that Dr. McAbee has created a great marriage: the Legal Services of New Jersey partnered up with a reputable autism treatment organization: Eden Autism Services group. Hopefully this will become a prototype across the nation and beyond, since we parents of children with autism know all too painfully how difficult it is to access quality treatment and once found, how difficult it is to actually afford it!
You know the education system is a disaster when parents SHUN mainstreaming
20/12/11 10:50
When it comes to autism, the mainstreaming versus segregation debate has been happening for decades. A story recently came out of Britain about a special needs school being shut down and the children being forced into the regular school system. The country may be different, but the arguments are exactly the same. In this case, the parents are complaining because the regular school system has already failed their children and they don’t want to see ACT II of the tragedy. The truth of the matter, though, is that it is not mainstreaming that is the problem but rather, a lack of expertise to effectively address this issue. We already know how to mainstream effectively. If every child being mainstreamed had a well-trained therapist/tutor/aide accompanying that child under the direction and supervision of a behavioral consultant, both the parents and the school bureaucrats would be amazed how smooth mainstreaming can be and how much the child with autism, and the typically developing peers would learn from this arrangement. In fact, the typically developing children would receive a powerful, positive learning experience like no other; moreover, the bureaucrats would be the first to rush in and claim ownership for the success!
Unfortunately, based on past performance, I fear that these children with autism are going to be forced into a system that is probably set up for failure. The children, their parents, and the typically developing peers will be exposed to the worst of experiences rather than the best.
Once again, it is not mainstreaming that is the problem; rather, it is incompetence write large.
Unfortunately, based on past performance, I fear that these children with autism are going to be forced into a system that is probably set up for failure. The children, their parents, and the typically developing peers will be exposed to the worst of experiences rather than the best.
Once again, it is not mainstreaming that is the problem; rather, it is incompetence write large.
When researchers are duped by policy wonks
17/12/11 12:55
There seems to be a pattern of researchers in the field of autism inadvertently being duped into interpreting their research in a way that harms children with autism. A word to the wise: if you are a researcher in the field of autism, do not get caught interpreting your research so that policy wonks can ration treatment for children with autism. You do so at your peril.
In the same way as Cancer researchers do not routinely recommend denial or rationing of treatment based on the progression of the Cancer, neither should autism researchers predict the efficacy of treatment for hypothetical children based on their limited studies regarding the effectiveness of treatment after a discrete amount of time. The moment these researchers dive into the murky waters of prediction of an individual child based on their research, they have become advocates instead of researchers. They have in a brief moment moored from pure researchers into policy wonks.
What am I talking about? I’m referring to the rich history of denial of services based on researcher testimony.
In the same way as Cancer researchers do not routinely recommend denial or rationing of treatment based on the progression of the Cancer, neither should autism researchers predict the efficacy of treatment for hypothetical children based on their limited studies regarding the effectiveness of treatment after a discrete amount of time. The moment these researchers dive into the murky waters of prediction of an individual child based on their research, they have become advocates instead of researchers. They have in a brief moment moored from pure researchers into policy wonks.
What am I talking about? I’m referring to the rich history of denial of services based on researcher testimony.
Since when did "cure" become the standard for funding treatment?
15/12/11 09:47
Once again, the media completely miss the point when it comes to autism. I was recently outraged when I read an article from the LA Times, doing a sophisticated hatchet job on intensive behavioral treatment. In the article they describe the work of Dr. Ivar Lovaas and speak of the amazing result of lobbyists in California who successfully fought to have a law passed that requires private health insurers to include autism treatment coverage. Instead of praising the end of health care insurance discrimination against the neurologically disabled, the LA Times questions the effectiveness of medically necessary autism treatment -- Applied Behavior Analysis.
The Times’ argument goes something like this:
Researchers have established that the therapy can improve behavior, language and intelligence test scores. But no scientist using the gold standards of medical research has reproduced the success rate reported by Lovaas.
First of all, this type of thinking shows a complete lack of understanding regarding science. The replications of Lovaas’ work done by researchers around the world demonstrate, unequivocally, that in every single well-designed study the experimental group benefit tremendously as opposed to the control group.
Second, the LA Times disparagingly describes how hope of “recovery” is a powerful motivator and a valuable marketing tool for companies that provide ABA services. So what! Every medical center advertises based on the goal of prospective recovery from a given disease!
What is relevant is the fact that thousands of children have benefitted and continue to benefit from effective behavioral treatment each and every day. These gains are supported by data! Based on this article, it is clear that the LA Times thinks children with autism are children of a lesser God.
How else can we describe the complete double standard when it comes to autism. Only where autism is concerned, does “recovery” mean success and substantial improvement mean failure! If we were to exchange the word autism with cancer, a treatment that prolongs someone’s life perhaps 2 or 3 years would be considered a success, even though the person ultimately passes away. Yet with autism, substantively improving the child’s condition, possibly enabling a life with dignity for their 85 years, is considered failure and not worth the money!
What is really going on becomes quite clear at the end of the Times article to those in the autism field. The researcher, Sally Rogers, who is known for a competing treatment that lacks the evidence of ABA, states:
If all our interventions are based on one-to-one therapy for vast hours”..., “very few children are going to get their needs met.”
And there you have the pernicious crux of the Times-endorsed reasoning: if the best -- and singularly proven -- autism treatment is too costly and time consuming, then it should not be recommended systemically. If every child can’t receive the treatment, no child should. This is worse than rationing treatment. This is actually denying the most effective treatment for autism! It is anti-intellectual and anti-science and has no place in the debate!
Instead of this researcher supporting the fight to force health care providers to cover medically necessary autism treatment, she essentially argues that most children should be sacrificed insofar as vast hours of one-to-one therapy are deemed to be impractical for the “greater good” of most children. Bunk! I suggest that if she is so pessimistic about our children’s right to treatment for their core health need, she needs to find a field where she will be better able to contribute, rather than remain a researcher who argues for limiting treatments that work and pushing treatments that don’t.
The Times’ argument goes something like this:
Researchers have established that the therapy can improve behavior, language and intelligence test scores. But no scientist using the gold standards of medical research has reproduced the success rate reported by Lovaas.
First of all, this type of thinking shows a complete lack of understanding regarding science. The replications of Lovaas’ work done by researchers around the world demonstrate, unequivocally, that in every single well-designed study the experimental group benefit tremendously as opposed to the control group.
Second, the LA Times disparagingly describes how hope of “recovery” is a powerful motivator and a valuable marketing tool for companies that provide ABA services. So what! Every medical center advertises based on the goal of prospective recovery from a given disease!
What is relevant is the fact that thousands of children have benefitted and continue to benefit from effective behavioral treatment each and every day. These gains are supported by data! Based on this article, it is clear that the LA Times thinks children with autism are children of a lesser God.
How else can we describe the complete double standard when it comes to autism. Only where autism is concerned, does “recovery” mean success and substantial improvement mean failure! If we were to exchange the word autism with cancer, a treatment that prolongs someone’s life perhaps 2 or 3 years would be considered a success, even though the person ultimately passes away. Yet with autism, substantively improving the child’s condition, possibly enabling a life with dignity for their 85 years, is considered failure and not worth the money!
What is really going on becomes quite clear at the end of the Times article to those in the autism field. The researcher, Sally Rogers, who is known for a competing treatment that lacks the evidence of ABA, states:
If all our interventions are based on one-to-one therapy for vast hours”..., “very few children are going to get their needs met.”
And there you have the pernicious crux of the Times-endorsed reasoning: if the best -- and singularly proven -- autism treatment is too costly and time consuming, then it should not be recommended systemically. If every child can’t receive the treatment, no child should. This is worse than rationing treatment. This is actually denying the most effective treatment for autism! It is anti-intellectual and anti-science and has no place in the debate!
Instead of this researcher supporting the fight to force health care providers to cover medically necessary autism treatment, she essentially argues that most children should be sacrificed insofar as vast hours of one-to-one therapy are deemed to be impractical for the “greater good” of most children. Bunk! I suggest that if she is so pessimistic about our children’s right to treatment for their core health need, she needs to find a field where she will be better able to contribute, rather than remain a researcher who argues for limiting treatments that work and pushing treatments that don’t.
An early diagnosis with no access to treatment is immoral
13/12/11 11:58
I watched a lecture today given by Dr. Ami Klin, an academic with expertise in autism. For the first time in many months, I thought here’s a guy who really understands. The lecture is 22 minutes long, and well worth the time.
Dr. Klin discusses research which has resulted in the ability to identify autism reliably at six months of age, prior to the age where behaviors characteristic of autism typically begin to appear. Where he garnered my respect was when he said that an early diagnosis is useless if parents do not have access to effective treatment for their children. This seems like an obvious point but it is often overlooked by many professionals and particularly policy makers.
We parents have been saying this for the last 20 years! Put simply, early diagnosis without access to treatment is immoral. Substitute autism with leukemia and everyone understands that a diagnosis without access to treatment is cruelty. Finally, we have an academic who makes it very clear that autism treatment and early diagnosis combine as a moral issue. When speaking about early diagnosis, Klin says, “But this [early diagnosis] would be immoral if we didn’t also have an infrastructure for intervention, for treatment.”
Dr. Klin discusses research which has resulted in the ability to identify autism reliably at six months of age, prior to the age where behaviors characteristic of autism typically begin to appear. Where he garnered my respect was when he said that an early diagnosis is useless if parents do not have access to effective treatment for their children. This seems like an obvious point but it is often overlooked by many professionals and particularly policy makers.
We parents have been saying this for the last 20 years! Put simply, early diagnosis without access to treatment is immoral. Substitute autism with leukemia and everyone understands that a diagnosis without access to treatment is cruelty. Finally, we have an academic who makes it very clear that autism treatment and early diagnosis combine as a moral issue. When speaking about early diagnosis, Klin says, “But this [early diagnosis] would be immoral if we didn’t also have an infrastructure for intervention, for treatment.”
Thank you, Dr. Klin, for boldly speaking the obvious and advocating for access to necessary autism treatment. Hopefully, we will hear more from Dr. Klin in the future!
When Speech Recognition Technology Meets Autism
06/12/11 10:16
Parents of children with autism, understandably, are always looking for a way to teach language to their afflicted child, and improve speech as much as possible since this is one of the core deficits in autism. Even children with Asperger’s syndrome suffer from speech that can sound somewhat stilted or robotic. Speech and Language Pathologists refer to the cadence of language as Prosody. When working with children who have autism, the first goal is usually to teach the child to communicate. Behavioral programs are clearly the best way; however, the one area that is often ignored is problematic prosody, which seems to be a high priority deficit to eliminate. The impression I get is that people work so hard at getting our children to communicate in every manner possible, that we parents should simply be content that our children speak at all, and that we shouldn’t be concerned that when our kids open their mouths, it’s obvious they have a disability. Although I understand the sentiment, I’m a firm believer that we must give our children the best opportunity possible to reach their fullest potential, and that includes the best attainable prosody! Imagine your child going into a store and getting help from the salesperson without being stigmatized for poor prosody!
Over the years, I’ve gone to countless autism related conferences and I’ve asked the same question: How do I improve my child’s prosody? I’ve never gotten a good answer. I’ve researched it myself and have not found any compelling research in this area.
Meanwhile, the private sector keeps innovating, particularly in affordable computer technology.
I took a relatively low-cost chance and bought Rosetta Stone (English) for my child with autism because they have a learning section on prosody. She has been working with this speech recognition program for a
couple of years, on and off. I have observed, purely anecdotally, that a program designed to teach a second language may be improving her prosody. The question is, can this be true? If we can use “off-the-shelf” language programs and apply them to autism with some success, think of the potential! I think I may be seeing good results; however, without a controlled study, I’m not certain, from a scientific standpoint.
Any graduate students out there looking for a thesis topic?
Over the years, I’ve gone to countless autism related conferences and I’ve asked the same question: How do I improve my child’s prosody? I’ve never gotten a good answer. I’ve researched it myself and have not found any compelling research in this area.
Meanwhile, the private sector keeps innovating, particularly in affordable computer technology.
I took a relatively low-cost chance and bought Rosetta Stone (English) for my child with autism because they have a learning section on prosody. She has been working with this speech recognition program for a
Any graduate students out there looking for a thesis topic?
Hopeless Special Education can't be fixed with "dispute resolution"
29/11/11 10:29
I just finished reading a study which quantifies the amount of autism related litigation against the educational system in the United States. The study concentrates on lawsuits which use the legal precepts codified under the Individuals with Disabilities Education Act (IDEA). This law of course contains the legal requirement that all wayward school districts must provide a Free and Appropriate Education in the Least Restrictive Environment (FAPE/LRE) for children afflicted with autism.
But apparently we’re a very litigious bunch, insofar as parents of children with autism file more lawsuits than parents of other children with special needs; I’m sure this comes as no surprise to the thousands of parents who endlessly fight for their children’s access to an appropriate education!
The interesting statistic in this study is that court decisions regarding children with autism account for almost one third of the litigation under this section in the Individuals With Disabilities Education Act (IDEA).
Predictably, the special education system does not like to waste money defending itself against a tsunami of autism related lawsuits. The authors suggest, “Special education leaders need to pay particular attention to establishing effective communications and trust building with parents of students with autism and to optimize the use of various approaches of alternative dispute resolution.”
Allow me to translate. The authors do not suggest that special educators should do the right thing for children with autism and follow the law, which requires inclusion and mainstreaming whenever possible; rather, they suggest that educators manipulate the parents to “trust” the professionals. If there is a problem, they should steer the parents away from going to court by deflecting substantive matters such as a systemic lack of medically necessary autism treatment, and instead focus on better “dispute resolution” and “trust building.”
It’s amazing how loyal parents of children with autism are when someone in the system actually looks out for their child and his future! The good special educators need power to advocate for the child in the system. The law, and the litigious nature of the parent, creates just the balance that a good special educator needs to push through the accommodations required for that child. If it’s uncomfortable for some bureaucrats to victimize children with autism because their parents have a crack team of litigators, and the law is on their side, so be it!
The authors of the study need to wake up: the reason that there is so much autism litigation is because the educational system fails children with autism on a regular basis. Autism can be the most difficult disability to accommodate successfully; however, with sufficient expertise, successful mainstreaming of children with autism in a school system is of benefit not only to the child with autism, but also to the typically developing children in that system.
Here is some advice for every school system that wants to avoid litigation: 1) hire skilled autism treatment talent at the district level to make the school district a magnet for parents who are invested in the future of their children with autism; and 2) allow autism experts, from birth-kindergarten, home or center treatment teams, to follow the children seamlessly into the system.
If school districts follow this simple formula, the amount of autism related litigation will diminish overnight!
But apparently we’re a very litigious bunch, insofar as parents of children with autism file more lawsuits than parents of other children with special needs; I’m sure this comes as no surprise to the thousands of parents who endlessly fight for their children’s access to an appropriate education!
The interesting statistic in this study is that court decisions regarding children with autism account for almost one third of the litigation under this section in the Individuals With Disabilities Education Act (IDEA).
Predictably, the special education system does not like to waste money defending itself against a tsunami of autism related lawsuits. The authors suggest, “Special education leaders need to pay particular attention to establishing effective communications and trust building with parents of students with autism and to optimize the use of various approaches of alternative dispute resolution.”
Allow me to translate. The authors do not suggest that special educators should do the right thing for children with autism and follow the law, which requires inclusion and mainstreaming whenever possible; rather, they suggest that educators manipulate the parents to “trust” the professionals. If there is a problem, they should steer the parents away from going to court by deflecting substantive matters such as a systemic lack of medically necessary autism treatment, and instead focus on better “dispute resolution” and “trust building.”
It’s amazing how loyal parents of children with autism are when someone in the system actually looks out for their child and his future! The good special educators need power to advocate for the child in the system. The law, and the litigious nature of the parent, creates just the balance that a good special educator needs to push through the accommodations required for that child. If it’s uncomfortable for some bureaucrats to victimize children with autism because their parents have a crack team of litigators, and the law is on their side, so be it!
The authors of the study need to wake up: the reason that there is so much autism litigation is because the educational system fails children with autism on a regular basis. Autism can be the most difficult disability to accommodate successfully; however, with sufficient expertise, successful mainstreaming of children with autism in a school system is of benefit not only to the child with autism, but also to the typically developing children in that system.
Here is some advice for every school system that wants to avoid litigation: 1) hire skilled autism treatment talent at the district level to make the school district a magnet for parents who are invested in the future of their children with autism; and 2) allow autism experts, from birth-kindergarten, home or center treatment teams, to follow the children seamlessly into the system.
If school districts follow this simple formula, the amount of autism related litigation will diminish overnight!
The Side-By-Side Refrigerator Theory?
25/11/11 10:34
Autism “researchers” have previously attacked mothers and fathers separately; apparently, it’s time to pathologize them together!
First we had refrigerator mothers, then we had disengaged fathers. Now we seem to have a combination of the two: researchers blaming both parents for the current autism epidemic. It’s hard to make this sort of stuff up!
Several years ago, there was a theory posited by Simon Baron-Cohen, the British psychologist who suggested that when “geeks marry geeks”, they create children with autism. He uses the term, “assortative mating” to suggest that people who are attracted to professions such as engineering or computing sciences will tend to marry each other. This in turn will increase the odds of having a child with autism, according to the theory. Baron-Cohen further posits that increased equality for women in the workplace has resulted in their increased participation in nontraditional careers such as engineering and computer science; consequently, the phenomenon of “geeks marrying geeks” is at an all time high, and therefore responsible for more children with autism.
For purposes of analysis, let’s assume this to be a plausible theory. Is there any support for the hypothesis? My instinct is to first ask when the theory was introduced, and second, whether there is any data to support the theory.
Baron-Cohen introduced his theory in 2006 and the theory was NOT supported with data in 2007, nor in 2008 by two other sets of researchers in the field. To me, this finding is not surprising given the tendency of regression towards the mean.
For Baron-Cohen to continue to develop his assortative-mating theory, I suggest he do what he has not done thus far:
1) Create a theoretical research program
2) Develop theoretical propositions
3) Create the hypothesis
4) Test the hypothesis
5) Collect the data
6) Analyze the data
7) Report the data
This is standard stuff for any serious research effort, but is strangely absent from Baron-Cohen’s side-by-side theory. At best, all we’ve seen from Baron-Cohen are steps one through three. We eagerly await the timely completion of steps four through seven!
Until such time, I consider this to be simply another attempt from another expert to pile on and once again blame the parents. I’m always on the lookout for the next sophisticated Blame the Family Theory. I’ll let you know when it appears!
First we had refrigerator mothers, then we had disengaged fathers. Now we seem to have a combination of the two: researchers blaming both parents for the current autism epidemic. It’s hard to make this sort of stuff up!
Several years ago, there was a theory posited by Simon Baron-Cohen, the British psychologist who suggested that when “geeks marry geeks”, they create children with autism. He uses the term, “assortative mating” to suggest that people who are attracted to professions such as engineering or computing sciences will tend to marry each other. This in turn will increase the odds of having a child with autism, according to the theory. Baron-Cohen further posits that increased equality for women in the workplace has resulted in their increased participation in nontraditional careers such as engineering and computer science; consequently, the phenomenon of “geeks marrying geeks” is at an all time high, and therefore responsible for more children with autism.
For purposes of analysis, let’s assume this to be a plausible theory. Is there any support for the hypothesis? My instinct is to first ask when the theory was introduced, and second, whether there is any data to support the theory.
Baron-Cohen introduced his theory in 2006 and the theory was NOT supported with data in 2007, nor in 2008 by two other sets of researchers in the field. To me, this finding is not surprising given the tendency of regression towards the mean.
For Baron-Cohen to continue to develop his assortative-mating theory, I suggest he do what he has not done thus far:
1) Create a theoretical research program
2) Develop theoretical propositions
3) Create the hypothesis
4) Test the hypothesis
5) Collect the data
6) Analyze the data
7) Report the data
This is standard stuff for any serious research effort, but is strangely absent from Baron-Cohen’s side-by-side theory. At best, all we’ve seen from Baron-Cohen are steps one through three. We eagerly await the timely completion of steps four through seven!
Until such time, I consider this to be simply another attempt from another expert to pile on and once again blame the parents. I’m always on the lookout for the next sophisticated Blame the Family Theory. I’ll let you know when it appears!
Dad needs a break, not sensitivity training
21/11/11 11:49
As if it were not enough to heap blame upon mothers of children with autism, now some folks are piling onto fathers, apparently because they are insufficiently engaged in the lives of their children. A new documentary, Autistic Like Me: A Father’s Perspective, chronicles the journey of fathers who have children with ASD. The goal of the film is to get fathers to open up and become more engaged with their children. Although I understand the sentiment, and some men may go through the process of coming to terms with being the father of a child with autism differently than some mothers, I’d like to suggest that a critique of inadequate “engagement” may be somewhat lacking in understanding and fairness. Most fathers are so busy busting their hump trying to bring in enough money to pay for the crushingly expensive cost of autism treatment, and working overtime to be effective advocates in fighting for their children’s rights, that their energy is completely spent by the time they come home each evening.
Research indicates that often it is the mother who is the first to either work fewer hours or leave her career all together in order to take care of the child with autism. Consequently, there is often only one income remaining to support the family. One needs to remember that when there is a child with autism in the home, life can become a chronic crisis (yes, there is such a thing). Parents’ sleep is often radically disrupted -- for years! -- yet society still expects parents of children with autism to perform normally at work every day and function optimally like everyone else.
They don’t sell Superman Pills at the local supermarket!
The last thing for which many fathers of children with autism have energy, is to “interact,” particularly with a child who does not naturally interact back with them. Where autism is concerned, the deep dysfunction of the domicile is no small matter; professionals should be content that the family unit remains functioning and intact! In its proper context, the notion of insufficient “engagement” on the part of the father is thoroughly trivial. Moreover, let’s not confuse cause with effect i.e., does a child with autism improve when a father becomes more engaged, or will a father become more engaged when a child’s autism starts to improve with effective, science-based treatment!
Here’s a proposed recipe for the film makers to help fathers come to terms with having a child with autism:
1) Show fathers the way to get their child access to a high quality, early intensive behavioral treatment program
2) Demonstrate the progress the child makes in an effective treatment program.
3) Provide the father with behavioral techniques required to allow them to engage meaningfully with their children
4) Tell them to go out there and bring home lots of money, since that is going to ultimately help their child get what’s required for health and well-being
5) Suggest that dad arrange a weekly night out for dinner alone with mom, where autism will be strictly forbidden as a topic of conversation
6) Advise them not to inherit tomorrow’s problems, since we do not know the child’s future until their full potential is realized
7) Get them involved with groups that advocate for the rights of their child. They will be able to work towards fixing the issue with the right group and, if necessary, the right lawyer.
It’s remarkable how easy it is for a father to come to terms with a child’s autism when the child is in an effective treatment program and he sees significant results! Let’s get more engagement with that idea.
Research indicates that often it is the mother who is the first to either work fewer hours or leave her career all together in order to take care of the child with autism. Consequently, there is often only one income remaining to support the family. One needs to remember that when there is a child with autism in the home, life can become a chronic crisis (yes, there is such a thing). Parents’ sleep is often radically disrupted -- for years! -- yet society still expects parents of children with autism to perform normally at work every day and function optimally like everyone else.
They don’t sell Superman Pills at the local supermarket!
The last thing for which many fathers of children with autism have energy, is to “interact,” particularly with a child who does not naturally interact back with them. Where autism is concerned, the deep dysfunction of the domicile is no small matter; professionals should be content that the family unit remains functioning and intact! In its proper context, the notion of insufficient “engagement” on the part of the father is thoroughly trivial. Moreover, let’s not confuse cause with effect i.e., does a child with autism improve when a father becomes more engaged, or will a father become more engaged when a child’s autism starts to improve with effective, science-based treatment!
Here’s a proposed recipe for the film makers to help fathers come to terms with having a child with autism:
1) Show fathers the way to get their child access to a high quality, early intensive behavioral treatment program
2) Demonstrate the progress the child makes in an effective treatment program.
3) Provide the father with behavioral techniques required to allow them to engage meaningfully with their children
4) Tell them to go out there and bring home lots of money, since that is going to ultimately help their child get what’s required for health and well-being
5) Suggest that dad arrange a weekly night out for dinner alone with mom, where autism will be strictly forbidden as a topic of conversation
6) Advise them not to inherit tomorrow’s problems, since we do not know the child’s future until their full potential is realized
7) Get them involved with groups that advocate for the rights of their child. They will be able to work towards fixing the issue with the right group and, if necessary, the right lawyer.
It’s remarkable how easy it is for a father to come to terms with a child’s autism when the child is in an effective treatment program and he sees significant results! Let’s get more engagement with that idea.
When accommodation becomes a synonym for segregation
17/11/11 15:24
There is a growing trend that attempts to change society to better accommodate the perceived proclivities of people with autism. Although I understand the good intentions behind the idea, by accommodating people with autism to absurd extremes, are we not shrinking their world so it becomes even smaller than it already is? Do we really want the ghettoization or segregation of people with autism from the rest of society? The unintended consequence of voluntary segregation is that it may eventually become involuntary. One only has to look at history to see past segregationist movements which argue “separate but equal.” I think I speak for a sensible majority that does not wish to see segregation for people with autism, or for anyone else with a disability.
So the question is, how do people with autism, some of whom may be disruptive, watch a movie or go on a merry-go-round? The answer is: systematic desensitization.
Using science, it’s a much better idea to help people afflicted with autism who may have negative reactions to loud noises or bright lights, or any aversion to something commonly found in society. Under the guidance of Behavioral Consultants who understand how to work with this group of people, we need to build up their tolerance and thereby, give them the ability to go anywhere, and see any movie that they may enjoy. For those who think that there is no harm in leaving people with autism to their idiosyncratic aversions, let me give you a few actual examples that may make you rethink the “re-engineer their environment” program and reject it.
Imagine a child who dislikes the music of a mega-star like Beyonce or Justin Bieber. At first glance, that doesn’t seem to be a big problem; however, we all know what eventually happens to those songs -- they end up as Muzak, and can be heard virtually everywhere e. g., in elevators, restaurants, stores, office buildings. Or imagine a child who has an aversion to Mickey Mouse, or any of the Disney Characters. These symbols pop up everywhere in society, and it is unpredictable where you will encounter them next. Who really wants to take someone with autism out into the community when, at any moment, the person may become distraught at the music in a random elevator or the image on a stranger’s t-shirt? When the child is small, this is somewhat problematic. When the person becomes an adult, the situation can become very serious. If people with autism are not helped to cope with sounds, sights, and images to which they have an aversion, their world shrinks, becoming smaller and smaller by the year, until eventually they may prefer to never leave their home or, in some cases, their room!
Instead of re-engineering the world to fit people with autism, let’s commit to giving people with autism the tools they require to cope with the real world around them, and thereby give them opportunities to participate in all the wonderful experiences that society has to offer.
Will my kid EVER talk?
16/11/11 08:56
One of the first questions that parents of newly diagnosed children often ask is: will my child ever speak? No professional really wants to touch that question with a ten foot pole because the answer is: it depends. I like to share what I’ve learn over 20 years of reading about this topic in the academic literature, speaking to thousands of parents of children with autism, and personally observing several dozen children with autism in behavioral treatment programs. I need to preface my opinions in this post by saying that I’m talking about children with autism, not Asperger’s syndrome (children with Asperger’s syndrome need to work on language as well; however, they have a much easier time improving their language abilities than children with autism).
Echolalia (including Delayed Echolalia)
If your child cannot use language to communicate but is able to repeat things people say, or can sing songs and actually pronounce words or the lyrics of a song, you should be very happy! With much hard work, and a qualified Behavioral Consultant and/a Behavioral Speech and Language Pathologist (SLP) your child will likely gain the ability to use language functionally. The child’s ability to use language will be highly dependent on the amount of time devoted to communication (and a once a week, one hour treatment session is generally not sufficient). Speech and language must be incorporated into an intensive program designed by a qualified Behavioral Treatment Consultant. If you have only recently established an intensive program for your child, at this point the full potential of your child is impossible to predict. After a few years of treatment, it will become much clearer to you, and the professionals in your orbit, regarding how fluent your child may become in future. So, my advice is not to inherit the future prematurely. Concentrate on maintaining a great treatment program with a heavy emphasis on speech and language!
Apraxia
There is a small subset of children with autism who also suffer from Apraxia, which is a difficulty in actually creating the verbal utterances required to speak. Apraxia occurs in children with and without autism. If a child with autism is Apraxic, the child will need a behavioral Speech and Language Pathologist to work with the child to teach how to create the individual sounds that comprise letters and words. This work should be part of an intensive program, where the SLP is a consultant to a team of behavioral therapists who practice the exercises designed and introduced by the SLP. There is controversy in the literature regarding the rare incidence of Apraxia amongst children afflicted with autism; however, if it is your child suffering from both, the prevalence of Apraxia in autism is irrelevant to you.
Aphasia
There is a subset of children with autism who also suffer from Aphasia: they cannot remember words, even after they are taught. A good behavioral SLP will be able to diagnose whether the child with autism also suffers from this syndrome. Although not common in children with autism, it is important to know whether the child suffers from Aphasia because the SLP, Behavioral Consultant and parent are going to have to agree on a strategy to attack the child’s communication difficulties. The challenge to create meaningful language is greater when Aphasia is added to the mix; however, working intensively on language is still crucially important for the child.
One very promising piece of research that was published by Smith et al. 1997, demonstrates that even the most severely affected children with autism can gain enough language to speak in words, label objects and express needs orally. Whether the children in this study suffered from Apraxia or Aphasia is less clear; however, these were children who had NO speech whatsoever at intake.
Echolalia (including Delayed Echolalia)
If your child cannot use language to communicate but is able to repeat things people say, or can sing songs and actually pronounce words or the lyrics of a song, you should be very happy! With much hard work, and a qualified Behavioral Consultant and/a Behavioral Speech and Language Pathologist (SLP) your child will likely gain the ability to use language functionally. The child’s ability to use language will be highly dependent on the amount of time devoted to communication (and a once a week, one hour treatment session is generally not sufficient). Speech and language must be incorporated into an intensive program designed by a qualified Behavioral Treatment Consultant. If you have only recently established an intensive program for your child, at this point the full potential of your child is impossible to predict. After a few years of treatment, it will become much clearer to you, and the professionals in your orbit, regarding how fluent your child may become in future. So, my advice is not to inherit the future prematurely. Concentrate on maintaining a great treatment program with a heavy emphasis on speech and language!
Apraxia
There is a small subset of children with autism who also suffer from Apraxia, which is a difficulty in actually creating the verbal utterances required to speak. Apraxia occurs in children with and without autism. If a child with autism is Apraxic, the child will need a behavioral Speech and Language Pathologist to work with the child to teach how to create the individual sounds that comprise letters and words. This work should be part of an intensive program, where the SLP is a consultant to a team of behavioral therapists who practice the exercises designed and introduced by the SLP. There is controversy in the literature regarding the rare incidence of Apraxia amongst children afflicted with autism; however, if it is your child suffering from both, the prevalence of Apraxia in autism is irrelevant to you.
Aphasia
There is a subset of children with autism who also suffer from Aphasia: they cannot remember words, even after they are taught. A good behavioral SLP will be able to diagnose whether the child with autism also suffers from this syndrome. Although not common in children with autism, it is important to know whether the child suffers from Aphasia because the SLP, Behavioral Consultant and parent are going to have to agree on a strategy to attack the child’s communication difficulties. The challenge to create meaningful language is greater when Aphasia is added to the mix; however, working intensively on language is still crucially important for the child.
One very promising piece of research that was published by Smith et al. 1997, demonstrates that even the most severely affected children with autism can gain enough language to speak in words, label objects and express needs orally. Whether the children in this study suffered from Apraxia or Aphasia is less clear; however, these were children who had NO speech whatsoever at intake.
Testimonials are best suited to late-night infomercials, not treatment guidance
14/11/11 10:23
When a child with autism is first diagnosed, we parents are all familiar with the frantic nature of the search for treatment. The physician or psychologist lands the bombshell and then says, “early intervention” is key. But what kind of intervention? The parent is left hanging, not knowing what to do. Some of the first stories parents hear about often include a child who didn’t talk until late but made it far enough to be a university professor today.
Parents and relatives go on a fact finding mission to get advice from people with Autism Spectrum Disorder who are accomplished. We try to glean an understanding of the disorder. Since autism is now so prevalent, every day there are more adults with ASD giving their personal testimonials. Today, in fact, I came across the latest testimonial sponsored by Autism Speaks. The author of the piece has only the best of intentions for parents; he encourages every person with autism spectrum disorder to share their stories.
Unfortunately, hopeful testimonials from adults on the autism spectrum may be very misleading. These adults who are eloquent enough to be in university or graduate school, probably have Asperger’s syndrome and share very little in common with a child diagnosed with autism; in short, their developmental trajectory may be very different. In addition, the research is clear that no one has the proverbial crystal ball to tell you what your child is going to be like as an adult. Even experts in the field cannot predict outcome.
The only statement with which most can agree in the autism field is that early intervention is the key. Those who have respect for science and understand the state of the science in autism treatments, will all agree that Intensive Early Behavioral Treatment (EIBI) is the key to success. The studies that have been produced by EIBI researchers make it clear that it takes a few years before any kind of reliable prediction can be made as to 1) whether the child will lose the diagnosis of autism and if not, 2) where the child will be as an adult in terms of independence, capability, and general happiness.
Advice to new parents: forget about the testimonials provided by well-meaning people who have never met your child and get thee to a qualified, behavioral consultant with expertise in Early Intensive Behavioral Treatment! You’ll never look back.
Parents and relatives go on a fact finding mission to get advice from people with Autism Spectrum Disorder who are accomplished. We try to glean an understanding of the disorder. Since autism is now so prevalent, every day there are more adults with ASD giving their personal testimonials. Today, in fact, I came across the latest testimonial sponsored by Autism Speaks. The author of the piece has only the best of intentions for parents; he encourages every person with autism spectrum disorder to share their stories.
Unfortunately, hopeful testimonials from adults on the autism spectrum may be very misleading. These adults who are eloquent enough to be in university or graduate school, probably have Asperger’s syndrome and share very little in common with a child diagnosed with autism; in short, their developmental trajectory may be very different. In addition, the research is clear that no one has the proverbial crystal ball to tell you what your child is going to be like as an adult. Even experts in the field cannot predict outcome.
The only statement with which most can agree in the autism field is that early intervention is the key. Those who have respect for science and understand the state of the science in autism treatments, will all agree that Intensive Early Behavioral Treatment (EIBI) is the key to success. The studies that have been produced by EIBI researchers make it clear that it takes a few years before any kind of reliable prediction can be made as to 1) whether the child will lose the diagnosis of autism and if not, 2) where the child will be as an adult in terms of independence, capability, and general happiness.
Advice to new parents: forget about the testimonials provided by well-meaning people who have never met your child and get thee to a qualified, behavioral consultant with expertise in Early Intensive Behavioral Treatment! You’ll never look back.
How to spot junk science, in fourteen minutes
10/11/11 11:04
Many of you may be familiar with the TED Talks site. They have a collection of lectures given by interesting people all over the world. One of the talks is focused on how science can be abused for an agenda. The talk is hilarious and will be of interest to every parent of a child with autism. In this fourteen minute TED Talks lecture, Ben Goldacre amuses while he educates regarding why good science is crucial and what bad science actually looks like.
Although Goldacre touches on many areas that have nothing to do with autism specifically, the insight he provides in terms of the way science is warped and distorted to push an agenda is extremely valuable. The field of autism is replete with junk science and this lecture provides a very entertaining way to arm parents with the knowledge to critically evaluate the next treatment that’s introduced into the autism marketplace.
Autism Speaks should pause to listen, for just a moment
09/11/11 10:51
Parents have a very difficult time negotiating the world of autism treatments. Everyone is out there offering the latest treatment for the disability of autism. This is nothing new, and until there is actually a cure for autism, various forms of autism snake oil will continue to be sold through the unreliable, age old testimonial.
What’s different now is that the researchers have upped the ante. They now have a well-funded, well-heeled autism organization provide legitimacy to propagate autism treatment myth. The organization I’m referring to is Autism Speaks.
The last thing we need is for Autism Speaks, and the scientists who work under their umbrella, to be associated in any way with autism treatment quackery. Today, there was yet another feel good testimonial on the Autism Speaks Official Blog espousing the virtues of Floortime. This testimonial is the product of training from a $15,000 grant provided by Autism Speaks!
I’m floored! Here are researchers, using a technique with no scientific evidence, receiving big money to train an army of therapists, teachers and respite providers across twenty-two states. Now the first kids to graduate from this program are being presented as success stories.
I’d like Autism Speaks to listen, for just a moment:
Prior to giving money to train people in a technique that has no scientific evidence, it is incumbent upon Autism Speaks to support well-designed research into the experimental treatment known as Floortime, to discern whether or not the treatment actually improves the condition of autism as compared to other treatments that are currently considered best practices.
I would like to say this to Dr. Geraldine Dawson, Chief Science Officer, Autism Speaks: you should know better! It does no service for children with autism, and the parents who advocate for them, for a leading autism organization to misinform about the efficacy of treatments; yet this is exactly what Autism Speaks is doing in this instance. By promoting and propagating quackery, Autism Speaks dilutes its legitimacy. In my view, this is shameful. Autism Speaks has enormous potential to change the lives of children with autism, if only they were to use that power responsibly.
What’s different now is that the researchers have upped the ante. They now have a well-funded, well-heeled autism organization provide legitimacy to propagate autism treatment myth. The organization I’m referring to is Autism Speaks.
The last thing we need is for Autism Speaks, and the scientists who work under their umbrella, to be associated in any way with autism treatment quackery. Today, there was yet another feel good testimonial on the Autism Speaks Official Blog espousing the virtues of Floortime. This testimonial is the product of training from a $15,000 grant provided by Autism Speaks!
I’m floored! Here are researchers, using a technique with no scientific evidence, receiving big money to train an army of therapists, teachers and respite providers across twenty-two states. Now the first kids to graduate from this program are being presented as success stories.
I’d like Autism Speaks to listen, for just a moment:
Prior to giving money to train people in a technique that has no scientific evidence, it is incumbent upon Autism Speaks to support well-designed research into the experimental treatment known as Floortime, to discern whether or not the treatment actually improves the condition of autism as compared to other treatments that are currently considered best practices.
I would like to say this to Dr. Geraldine Dawson, Chief Science Officer, Autism Speaks: you should know better! It does no service for children with autism, and the parents who advocate for them, for a leading autism organization to misinform about the efficacy of treatments; yet this is exactly what Autism Speaks is doing in this instance. By promoting and propagating quackery, Autism Speaks dilutes its legitimacy. In my view, this is shameful. Autism Speaks has enormous potential to change the lives of children with autism, if only they were to use that power responsibly.
The Law of Unintended Consequences Meets Autism Mandates: Why Autism and Asperger's Syndrome Seem Interchangeable
08/11/11 10:45
The funding incentive often explains much of what seems illogical.
Today we have yet another article about the confusion between autism and Asperger’s syndrome. It appears that despite the similar scores on various tests given during an ASD assessment, there is wide variation across the U.S. between the number of children given a diagnosis of either Asperger’s syndrome or autism. The study’s researchers urge parents not to concentrate too much on the difference between autism, PDD-NOS, and Asperger’s syndrome, but rather, to look at the child’s difficulties and try to get them help.
For most of us, this sounds like reasonable advice.
However, to anyone who understands the politics of autism, it becomes abundantly clear that these researchers are completely disconnected from the various issues with which parents must contend when it comes to autism spectrum disorders. Parents need an objective diagnosis in order to do research on how to get help; however, if treatment and support services are not provided for those with any diagnosis other than autism, parents are put into an impossible situation. On the one hand, parents need the truth about where their child is diagnosed on the autism spectrum; on the other hand, that truth may create a barrier to treatment services, if society predicates a formal autism label to service or insurance dollars.
Based on recommendations of the study’s authors, it’s obvious these researchers don’t have a clue regarding what parents actually goes through.
The confusion, which is actually a complete mismanagement of the field of autism spectrum disorders, is then used by researchers as a justification to move toward a general diagnosis of ASD, rather than differentiating between Asperger’s syndrome, PDD-NOS, and autism. This advice is political rather than clinical. We know the difference between autism and Asperger’s syndrome and we desperately need accurate diagnoses! Autism and Asperger’s syndrome must be differentiated for the benefit of both groups of children and adults. An accurate Asperger’s syndrome diagnosis must never be an obstacle to treatment funding.
A better idea: 1) have states’ mandates cover all ASD treatments, and then 2) use objective criteria to differentiate between autism, PDD-NOS, and Asperger’s syndrome. Once access to treatment services dollars are decoupled from the diagnostic label, researchers may be pleasantly surprised as to how the autism- Asperger’s syndrome confusion will cease to be an issue.
Today we have yet another article about the confusion between autism and Asperger’s syndrome. It appears that despite the similar scores on various tests given during an ASD assessment, there is wide variation across the U.S. between the number of children given a diagnosis of either Asperger’s syndrome or autism. The study’s researchers urge parents not to concentrate too much on the difference between autism, PDD-NOS, and Asperger’s syndrome, but rather, to look at the child’s difficulties and try to get them help.
For most of us, this sounds like reasonable advice.
However, to anyone who understands the politics of autism, it becomes abundantly clear that these researchers are completely disconnected from the various issues with which parents must contend when it comes to autism spectrum disorders. Parents need an objective diagnosis in order to do research on how to get help; however, if treatment and support services are not provided for those with any diagnosis other than autism, parents are put into an impossible situation. On the one hand, parents need the truth about where their child is diagnosed on the autism spectrum; on the other hand, that truth may create a barrier to treatment services, if society predicates a formal autism label to service or insurance dollars.
Based on recommendations of the study’s authors, it’s obvious these researchers don’t have a clue regarding what parents actually goes through.
The confusion, which is actually a complete mismanagement of the field of autism spectrum disorders, is then used by researchers as a justification to move toward a general diagnosis of ASD, rather than differentiating between Asperger’s syndrome, PDD-NOS, and autism. This advice is political rather than clinical. We know the difference between autism and Asperger’s syndrome and we desperately need accurate diagnoses! Autism and Asperger’s syndrome must be differentiated for the benefit of both groups of children and adults. An accurate Asperger’s syndrome diagnosis must never be an obstacle to treatment funding.
A better idea: 1) have states’ mandates cover all ASD treatments, and then 2) use objective criteria to differentiate between autism, PDD-NOS, and Asperger’s syndrome. Once access to treatment services dollars are decoupled from the diagnostic label, researchers may be pleasantly surprised as to how the autism- Asperger’s syndrome confusion will cease to be an issue.
Negligence by reclassification
07/11/11 11:22
We live in a strange world. When people suffer with an unbelievably difficult condition, typically we ask how we can alleviate the suffering. For some reason, autism is the one condition where everything is the opposite. As a society, we often act in such a way to make sure that children with autism do not get the help they need. How did we do this and is this changing?
Traditionally, there has been little to no outcome criteria for autism services. It has seemingly been most important that everyone feel good about providing generic services, and that people are judged on how many children are processed, and how much money is spent on each child. It is still very few systems that actually measure how children are progressing as a result of the services they receive. For the most part, we are not actually talking about treatment, but “services.” Fortunately, various laws protecting our children and the latest autism mandates that are being passed act as a counter weight to the unfortunate policy history of the disorder.
Now there is apparently a new, improved way to avoid providing treatment for children with autism. The method is to simply reclassify autism as simply being a natural, neurological difference; the need for treatment vanishes. We then need only add some academic legitimacy to the mix, and some governments and health insurance companies can save millions of dollars.
Unfortunately, despite this academic sleight of hand, there are still thousands of children with autism who desperately need help. Harold Doherty’s autism blog provides a well thought out analysis that I recommend people read. He goes into some depth about this vexing issue.
It’s hard enough to have a child suffering from the difficult condition of autism. Now parents actually have to fight for the rights of that child to even be considered disabled! My heart goes out to all the parents who haven’t slept for a decade, who have to battle the school districts daily to make sure their child is safe and has equal access to an education, who have spent their way into poverty in order to pay for treatment, whose lives have been changed forever because of their devotion to their child. Despite the growing number of people who are attempting to revise reality by having it reclassified, those of us who have lived it understand the truth. Autism is a very disabling condition, and our children need science-based treatment for their condition, despite what the editors of the various journals may publish to challenge the notion.
Traditionally, there has been little to no outcome criteria for autism services. It has seemingly been most important that everyone feel good about providing generic services, and that people are judged on how many children are processed, and how much money is spent on each child. It is still very few systems that actually measure how children are progressing as a result of the services they receive. For the most part, we are not actually talking about treatment, but “services.” Fortunately, various laws protecting our children and the latest autism mandates that are being passed act as a counter weight to the unfortunate policy history of the disorder.
Now there is apparently a new, improved way to avoid providing treatment for children with autism. The method is to simply reclassify autism as simply being a natural, neurological difference; the need for treatment vanishes. We then need only add some academic legitimacy to the mix, and some governments and health insurance companies can save millions of dollars.
Unfortunately, despite this academic sleight of hand, there are still thousands of children with autism who desperately need help. Harold Doherty’s autism blog provides a well thought out analysis that I recommend people read. He goes into some depth about this vexing issue.
It’s hard enough to have a child suffering from the difficult condition of autism. Now parents actually have to fight for the rights of that child to even be considered disabled! My heart goes out to all the parents who haven’t slept for a decade, who have to battle the school districts daily to make sure their child is safe and has equal access to an education, who have spent their way into poverty in order to pay for treatment, whose lives have been changed forever because of their devotion to their child. Despite the growing number of people who are attempting to revise reality by having it reclassified, those of us who have lived it understand the truth. Autism is a very disabling condition, and our children need science-based treatment for their condition, despite what the editors of the various journals may publish to challenge the notion.
A dog sees only in black and white, but WE can see a rainbow of possibilities
04/11/11 11:32
If the family deploys the service dog wisely, and the service dog is able to go “under cover” and simply look to the outside world as the family dog, that dog can become a social lubricant to the community on the street and with other kids and parents in the park. Dog owners are repeatedly stopped and asked about their dog when out on a walk. The dog gives the child opportunities to answer questions and to engage in conversation. What’s great about this conversation is that the child can be taught to answer the various questions that are generally asked again and again. In short, the dog can help to de-stigmatize the child and his family, and the family becomes recast in the neighborhood as the nice family with the great dog, rather than perhaps that stressed out family with the special needs kid. Once there is a dog in the mix, the family is far more approachable and the child carries a new label: dog lover or dog owner.
There is a big world out there of dog lovers, and they recognize each other. You are either a member of the “dog lover’s club” or not. The beauty of a service dog is that, to the uninitiated, the dog just looks very well bred, with a great disposition, rather than professionally trained. In addition, part of the training of a service dog can be simple tricks which act like a magnet in the park to bring children to interact with the child! Then the child with autism becomes the kid who is great at teaching the dog to perform on command. Competence replaces disability. Service dogs can certainly perform an important safety role for persons with disability, but for kids with autism, the dog’s service can extend to social normalization and community integration, for the child and family. That’s important too!
Microsoft and Autism Have Kinected
03/11/11 11:04
A few studies researching the value of exercise for children with autism have been published in the las
t twenty-five years. Although the long term benefits of exercise for children with autism specifically have not been adequately explored, we do know that exercise can decrease the amount of self-stimulatory behavior immediately after vigorous exercise (mild exercise had no effect). This is good to know for those working with children with autism since vigorous exercise immediately prior to a one-on-one treatment session with a child may make that child more attentive and therefore easier to work with. The question, though, has always been how to efficiently encourage the child to happily exercise immediately prior to a session?
Enter the Kinect!
Thanks to Microsoft, we now have a convenient, vigorous exerciser that hooks onto our T.V. and can be extremely reinforcing to the child with autism (depending upon the game). Now with the Kinect, not only can the child exercise immediately prior to a one-on-one session as a leisure activity, the child can also “work for” the Kinect as a reward during a break. Talk about a powerful tool: a behavioral reinforcer tool that also helps suppress self-stimulatory or stereotypic behavior short term! This is a great example of the unintended, positive consequences of innovation. Children with autism were obviously not a Microsoft target consumer, but they are benefitting greatly from this technological advance!
Now that we have a convenient new tool in the Kinect, I would very much like to see more research done on the value of exercise for children with autism. Any kinesiologists out there up to the challenge?
Enter the Kinect!
Thanks to Microsoft, we now have a convenient, vigorous exerciser that hooks onto our T.V. and can be extremely reinforcing to the child with autism (depending upon the game). Now with the Kinect, not only can the child exercise immediately prior to a one-on-one session as a leisure activity, the child can also “work for” the Kinect as a reward during a break. Talk about a powerful tool: a behavioral reinforcer tool that also helps suppress self-stimulatory or stereotypic behavior short term! This is a great example of the unintended, positive consequences of innovation. Children with autism were obviously not a Microsoft target consumer, but they are benefitting greatly from this technological advance!
Now that we have a convenient new tool in the Kinect, I would very much like to see more research done on the value of exercise for children with autism. Any kinesiologists out there up to the challenge?
When the fox guards the chicken coop: A review of the film "Medicare's Orphans"
01/11/11 18:45
Now that the new documentary film about Canada’s abject failure in autism health care has been released, I’d like to share some thoughts about the precedent setting film in the world of autism advocacy: Medicare’s Orphans.
Many films about autism understandably focus in on the miserable lives of children with autism. This can sometimes be hard to watch. Medicare’s Orphans is not that kind of film.
The documentary chronicles the protracted battle to include children with autism in the Canadian health care system. It’s a strange juxtaposition to watch since in the United States, the debate lately has been about creating a health care system where everyone is covered. In contrast, Canada already has a supposed universal health care system, yet this is a story about the systematic exclusion of the one group that is shut out of health care -- children afflicted with autism.
How strange! There is a group of Canadians who don’t get health care coverage for their core health need -- autism! I guess that’s what happens when the fox guards the chicken coop, when the health care system and the government are one in the same. When government is the health insurance provider, it apparently does a lousy job of holding itself to account where a lack of autism treatment coverage is concerned.
The film describes the amazing lengths to which Canadian parents have gone to right this wrong. It shows the important successes in the courts, and the failure of the legal system at the highest level -- the Supreme Court of Canada. The filmmakers take us on a journey from coast to coast, meeting courageous parents and their children with autism. We are introduced to one parent who actually walked 286 miles in the harsh Canadian winter to Ottawa to plead his case and raise awareness of this horrendous injustice.
We are heartened by the successes of children who were fortunate enough to receive treatment because, in some cases, their parents forfeited everything to fund the treatment. In one case, we meet a woman who has rented out every room in her home to pay for autism treatment. We are also angered and disgusted by the complete failure of the Canadian health care system, which lands one child in the psychiatric unit of an Ontario hospital.
Through all this, the message is clear. The film acts as a call to action!
Those who live in the United States need to wake up every morning and appreciate the fact that in the U.S., children with autism enjoy the protection of the Americans with Disability Act, the Individuals with Disability Education Act, the Mental Health Parity Act and the States’ Autism Mandates that are being passed daily, the most recent one in the State of New York, marking the 29th state that now legally requires insurance companies to cover the cost of effective autism treatment.
Let’s hope that Medicare’s Orphans will so thoroughly embarrass the Canadian government that it finally does something about its hypocrisy. Canada claims to be a light unto nations where universal health coverage is concerned, yet it does precisely the opposite by excluding a whole class of its citizens from healthcare - kids with autism.
Visit their website to learn more about the Medicare for Autism Now! movement.
Many films about autism understandably focus in on the miserable lives of children with autism. This can sometimes be hard to watch. Medicare’s Orphans is not that kind of film.
The documentary chronicles the protracted battle to include children with autism in the Canadian health care system. It’s a strange juxtaposition to watch since in the United States, the debate lately has been about creating a health care system where everyone is covered. In contrast, Canada already has a supposed universal health care system, yet this is a story about the systematic exclusion of the one group that is shut out of health care -- children afflicted with autism.
How strange! There is a group of Canadians who don’t get health care coverage for their core health need -- autism! I guess that’s what happens when the fox guards the chicken coop, when the health care system and the government are one in the same. When government is the health insurance provider, it apparently does a lousy job of holding itself to account where a lack of autism treatment coverage is concerned.
The film describes the amazing lengths to which Canadian parents have gone to right this wrong. It shows the important successes in the courts, and the failure of the legal system at the highest level -- the Supreme Court of Canada. The filmmakers take us on a journey from coast to coast, meeting courageous parents and their children with autism. We are introduced to one parent who actually walked 286 miles in the harsh Canadian winter to Ottawa to plead his case and raise awareness of this horrendous injustice.
We are heartened by the successes of children who were fortunate enough to receive treatment because, in some cases, their parents forfeited everything to fund the treatment. In one case, we meet a woman who has rented out every room in her home to pay for autism treatment. We are also angered and disgusted by the complete failure of the Canadian health care system, which lands one child in the psychiatric unit of an Ontario hospital.
Through all this, the message is clear. The film acts as a call to action!
Those who live in the United States need to wake up every morning and appreciate the fact that in the U.S., children with autism enjoy the protection of the Americans with Disability Act, the Individuals with Disability Education Act, the Mental Health Parity Act and the States’ Autism Mandates that are being passed daily, the most recent one in the State of New York, marking the 29th state that now legally requires insurance companies to cover the cost of effective autism treatment.
Let’s hope that Medicare’s Orphans will so thoroughly embarrass the Canadian government that it finally does something about its hypocrisy. Canada claims to be a light unto nations where universal health coverage is concerned, yet it does precisely the opposite by excluding a whole class of its citizens from healthcare - kids with autism.
Visit their website to learn more about the Medicare for Autism Now! movement.
The film "Medicare's Orphans" released today!
01/11/11 11:59
The long awaited film, Medicare’s Orphans was released today! The documentary chronicles the plight of children with autism in Canada, who are systematically excluded from Canada’s purportedly universal health care system.
I will provide an in depth review of this essential film in the coming days, but in the meantime, I invite you to watch this forty-two minute documentary that will change the way you look at the rights of children with autism forever. Due to the important nature of this topic to the autism community world-wide, access is currently provided free of charge.
To view the film, click on the screen below:
Medicare's Orphans. from MedicareForAutismNow on Vimeo.
iPoint and iPad are not autism treatments
30/10/11 19:30
Since
when did communicating in a non-verbal way become a “emerging treatment?” Here is one in many examples demonstrating how the National Standards Report does not understand the genuine meaning of autism treatment. Read more...
Routine screening for autism is not routine enough
28/10/11 10:40
Everyone talks about how crucial early diagnosis is for children with autism. I wholeheartedly agree. Why then, are we having such a difficult time making this happen? The screening process is quick, easy and unobtrusive. What is the obstacle then? Read more...
Hypocrisy, thy name is Canada
27/10/11 07:17
"The war that our own government is waging against our children is not over..."
Jean Lewis, “Medicare’s Orphans”
I have previously discussed the important Canadian documentary film produced by the autism treatment advocacy organization, Medicare For Autism Now! In the most recent trailer released, Jean Lewis and David Marley, co-founders of Medicare for Autism Now!, discuss the long-running autism wars in British Columbia; they lay Canada bare. Read more...
Maxwell Smart had a phone in his shoe...
25/10/11 12:40
Autism is too serious for pretending
24/10/11 09:55
Seemingly every day, a person purportedly afflicted with autism gives an eloquent speech on a sophisticated concept. Or, equally as disturbing, we read about someone who independently goes through life and at the age of 25, is suddenly diagnosed with autism. Read more...
The Market Power of Autism
21/10/11 12:59
Persons with Disabilities Need Good Laws, Not Good Intentions
19/10/11 16:35
From time to time, news reports are full of horrible stories regarding the mistreatment of people with autism. Unfortunately, news from Canada suggests the abuse seems to be more entrenched than previously thought, as the blog Facing Autism in New Brunswick lays out. From the prairie province of Alberta to the maritime province of New Brunswick, in Canada, abuse is indeed evident from sea to shining sea. Read more...
Studying the Wrong Pathology
18/10/11 17:36
During each visit, children will be assessed on their academic skills, with a focus on language and literacy. Parents will also be interviewed to assess perceived school factors, such as quality learning opportunities and child engagement. In addition, parents and teachers will complete questionnaires to measure factors such as the child’s social skills and behavior, the parent’s involvement in school, and the student-teacher-relationship.
On the one hand, we want to applaud the effort. On the other hand, we already know what makes for a successful vs. unsuccessful transition to school. Read more...
New Autism Education Study: a failing grade for teachers
17/10/11 17:58
A report from Michigan State University is making waves. Finally, someone has called the special education profession on the carpet and exposed the fact that almost half of Michigan teachers are unqualified to teach kids with autism. Read more...
Can Autism and Bilingualism Co-exist?
17/10/11 09:50
A study has just been conducted on twenty-eight children with autism, fourteen of whom are from bilingual families and fourteen who are not. From this study, the authors claim that bilingual children with autism can function “successfully” as bilingual.
At first glance we can all feel good Read more...
At first glance we can all feel good Read more...
Steve Jobs and the Art of Autism Cool
14/10/11 09:11
With the passing of Steve Jobs, I’ve read all about this incredible thinker’s contribution to our world, and even to the progress of our children with autism; few understood that what Jobs also did was help make our kids “cool.” Read more...
Refrigerator Moms Obsolete When Hell Freezes Over
11/10/11 19:39
In every generation there seems to be yet another so-called expert that blames mothers for autism. The new theory is generally a variant of the same old recycled theory that blames poor ole mom. Read more...
The Purgatory of Sleep Deprivation
10/10/11 17:06
One of the unfortunate possible side-effects that children with autism s
uffer from is abnormal sleep patterns. Whether problems with going to sleep, or staying asleep, if you have a child like this, welcome to the club of perennial sleep deprivation. If you are not a member of this group of parents, consider yourself very fortunate. Read more...
Profound failure looks like this
10/10/11 09:09
Another day, another child without treatment, this time with disasterous results. A judge has just cleared a special education teacher of charges regarding her behavior in restraining a student with autism in Indiana. Now parents in Indiana are concerned that the rights of children with autism will not be protected with respect to restraints. Read more...
When Generic Isn't Good Enough
07/10/11 11:48
Surgeons are trained to operate, dentists are trained to drill and fill, why does the job description of classroom aides for children with autism say only that, “ability to lift” is required? Surely lifting is a sign of failure when it comes to autism -- not success -- since by the time a child, or adult with autism needs to be man-handled, the system has truly failed that person. Read more...
Why do so many attempt to short change children with autism?
06/10/11 08:52
Science is stubborn -- you just can’t “do over” and expect original, robust findings to go away. However, that’s just what the National Standards Report (NSP) (funded by a private non-profit, fund-raising organization) tries to do in order to neutralize the 1999 New York State Department of Health Early Intervention Study. They justify this by saying: Read more ...
The flavor of the month is calcium
04/10/11 10:05
With
Overdue: A Specialty in Autism Treatment
03/10/11 09:36
When a child is first diagnosed, and parents are told early intervention is the key, the frantic search for early intervention begins! This fuzzy terminology itself is problematic because it is not “early intervention” that is key; rather, it is “early intensive behavioral intervention” that is the answer. The savvy parents figure this out within the first few months, if not earlier. Read more...
We know why ships register in Panama... but autism treatment?
29/09/11 12:03
Don’t pack your bags just yet.
The desperate lengths to which parents of children with autism go continues to amaze me. Unfortunately, sometimes the experimentation is dangerous. What makes things worse is that the media fuels this kind of experimentation rather than using a filter of common sense. Read more...
The desperate lengths to which parents of children with autism go continues to amaze me. Unfortunately, sometimes the experimentation is dangerous. What makes things worse is that the media fuels this kind of experimentation rather than using a filter of common sense. Read more...
The Dignity of a Job
27/09/11 11:21
Once your child has graduated from high school, whether in the typical educational stream or in the special education stream, the next question you need to ask is: How is he or she going to make a living?
Some of you may be thinking: “Is this realistic?” Yes, it is. Read more...
Some of you may be thinking: “Is this realistic?” Yes, it is. Read more...
Toilet Training: Autism Speaks Gets Amnesia
26/09/11 12:25
Autism Speaks is preparing a toilet-training information kit for parents of children with autism. This is a very good idea because toilet training is one of the first hurdles that a parent of a child with autism experiences either before, or soon after, the diagnosis. Read more...
Don't Let Common Sense Wander
24/09/11 12:33
I recently came across yet another news account about a child with autism that wandered off; luckily this child was found alive and safe! Seemingly every week we hear the same story, simply in a different location. Read more...
We've lost that lovin' feeling...
23/09/11 12:46
As we all know, parents of children with autism are bombarded daily with offers to cure their children with the latest treatments. Read more...
Kevin Dewalt, Founder, Puzzle Ribbon Project Interviews Sabrina Freeman, Ph.D.
21/09/11 12:38
Kevin Dewalt is the founder of the Puzzle Ribbon Project. Today he interviews Sabrina Freeman on: Why Objective Science is Critical for Identifying Evidence-based Treatments. Read more...
Medicare's Orphans: Fourth Trailer Available for Viewing
21/09/11 08:58
The organization, Medicare for Autism Now has just released its fourth trailer for the film Medicare’s Orphans. It is so powerful -- a must watch!!!! Read more...
The Power of Obsession
20/09/11 15:21
Most parents of a child with autism know that children with autism spend an inordinately long period of time on narrow interests. Read more...
Medicare's Orphans: An Interview with the Producer, Jean Lewis
20/09/11 09:10
I recently had the privilege of speaking with Jean Lewis, founder of Medicare for Autism Now!, and producer of the exciting film, Medicare’s Orphans, to be released in October 26th, 2011. Read more...
Autism Votes! Where "Autism Speaks" Shines
19/09/11 11:39
The Combating Autism Act is about to expire, and the Autism Speaks Initiative, Autism Votes is strongly behind the move to get Congress to reauthorize the act. The Combating Autism Reauthorization Act (CARA) can be downloaded here. Read more...
The Integration Ballet
17/09/11 17:30
Autism and the Role of Music: Part Two
15/09/11 18:09
Now that you’ve mastered the strategy discussed in Autism and the Role of Music, we can now talk about the next steps. Read more...
Autism and the Birthday Party: A Litmus Test
15/09/11 00:40
Squeezing Out Efficiency from Autism Treatment Dollars
13/09/11 18:23
Whether funded by an insurance company or government funded, Individualized Funding (where the money is given directly to the disabled person to choose treatment professionals) is the “holy grail” for parents of children with autism. The reason for this is simple: competition. Read more...
Autism and the Role of Music
12/09/11 17:49
Read more...
Autism after 16: A website worth checking out
12/09/11 08:59
The internet inundates us daily with information that competes for our valuable time; as a result, good resources are often buried under mediocrity. I was fortunate to have someone introduce me to the site Autism after 16, Read more...
Is it a game-changer from the M.I.N.D. Institute?
09/09/11 05:51
Yesterday, I read about the most amazing finding from a online news story and started to get really excited. Researchers from the Autism Phenome Project at the UC Davis MIND Institute, reported that they’ve found two different kinds of autism that are biologically distinct. Read more...
Is it my imagination, or are we on the verge of something big?
07/09/11 10:45
Greed is good: Let's give a group hug to big "pharma"
06/09/11 11:58
The National Standards Report Panel Sings Off Key
02/09/11 23:46
This is the first in a series of posts on the various findings of the autism treatment guidelines from the National Standards Report (NSR). Some of you may be thinking, “What does this dry, boring group of Ph.D.s have to do with me, or my kid?” Read more...
Staging a Miracle: An Interview with Jason Eden
02/09/11 15:22
I had the privil
ege of speaking with Jason Eden, the author of Staging a Miracle: A Practical Parent’s Guide to Surviving an Autism Diagnosis. In this interview, Jason discusses his journey from diagnosis to treatment and ultimate success with his son. Read more...
The Perverse Incentive to Stay Unemployed
01/09/11 09:36
As parents who engage in a herculean effort (on a daily basis) to provide treatment for our children with the goal that they will eventually enter the workforce and ultimately be taxpayers, I have some sobering news for you: the incentive structure that some government bureaucracies create is so warped that you actually have to go against your child’s economic self interest to help your adult child join the workforce. Huh...? Yes, you read that correctly! Let me put it simply: It is against your child’s best interest to join the workforce even if s/he has a skill. Read more...
We're Aware Already: Part Two
01/09/11 08:20
After my first “We’re Aware Already!” post, I was sent a link from a reader letting me know that I was not the first person to have this reaction. In fact, the post I received is so “on the money,” that I received permission to repost, and here it is in its entirety. I should mention that the Association for Science in Autism Treatment is a very worthwhile group with a great newsletter. Subscribe for free: Click here to signup. Read more...
We're Aware Already!
31/08/11 09:30
Year after year, we keep hearing the same message: Autism Awareness, Autism Awareness... I think that at this point, we are already aware and it is time to tell people what to do with their awareness! Read more...
Back to School for Children with Autism: When Do I Put my Lawyer on Speed-Dial?
30/08/11 09:21
For many parents of children afflicted with autism, the end of summer is also the end of a brief respite from the stress and rancor of battling school district officials and staff for appropriate accommodations for your child. Read more...
An Inconvenient Truth for Autism film: Third trailer available for viewing
28/08/11 19:58
The organization, Medicare for Autism Now has just released its third trailer for the film Medicare’s Orphans. Watch the trailer...
Vaccines & Autism: Mistrust and the Public Health Dilemma
26/08/11 15:43
What are free societies to do when citizens no longer trust their scientists? Thousands of parents are not vaccinating their children due to the fear that vaccines cause autism. Read more...
Riding the wave of quackery!
25/08/11 18:27
Surf's up, folks! Until recently, sunblock was only required for one form of autism treatment quackery: swimming with dolphins. Now there is yet another reason to slather up your child: Surfing Therapy! Yup, you read that correctly. Surfing Therapy… Read more...
Lawyers are a kid's best friend!
24/08/11 09:52
We may be under water, but our kids aren't
23/08/11 09:31
Parents of children with autism often find themselves groaning under the financial burden of the cost of autism treatments. Read more...
It's a small, small world...
22/08/11 11:11
For people with autism, it can be a small world... and that’s not necessarily a good thing. In order to avoid this fate for our children, it’s important to understand how it starts, and how we can fight it! Read more...
A Review of Staging a Miracle: A Practical Parent’s Guide To Surviving an Autism Diagnosis
19/08/11 19:11
Does Asperger's syndrome deserve to be eliminated?
19/08/11 10:46
When a child is diagnosed with autism, the last issue on the mind of a parent is the process by which the diagnostic criteria for an autism spectrum disorder is established; however, Read more...
Do we feel lucky? Autism and the sibling question
18/08/11 11:30
We’ve had a few days to absorb the ramifications of the latest study regarding autism incidence rates amongst siblings, and now we’re all wondering whether to have another child (luckily for me, I had another child before these horrendous data were published - sometimes ignorance is, indeed, bliss). Read more...
Stop conflating autism with Asperger's Syndrome and pathologizing brilliance!
17/08/11 09:48
Why is it that people are so quick to latch on to the rare person with Asperger’s Syndrome(AS), conflate AS with autism, add amazing brilliance and then manufacture false hope for parents of children with autism? Read more...
We'd love to help, but we've got no resources... Really?
16/08/11 10:11
I’m sure that everyone has heard the expression, “nothing’s new under the sun...” We’ll, that is certainly true in the struggle for parents of children with autism, specifically when it comes to securing resources from the system. Read more...
Autism's "Inconvenient Truth": Trailer 2
15/08/11 12:47
Here’s the 2nd of four movie trailers which advertises an upcoming documentary, Medicare's Orphans, scheduled for release in mid-September. The 2nd trailer is quite inspiring, and in my personal experience, quite representative of some of the children who have benefitted from Early Intensive Behavioral Treatment. Enjoy! Watch...
Risk of autism recurrence higher than we thought: wait a minute!
15/08/11 09:45
Today, the internet is a buzz with a new claim that asserts the following: if you have one child with autism, your odds of having another is 19% (and 25% if the new baby is a boy)! That is a pretty shocking statistic, and yes, Read more...
More useless advice from generic experts...
12/08/11 10:49
Over twenty years ago, when I was drafted into the Autism Wars, I could not believe how little was known about autism and how few autism specific resources existed. Almost everyone seemed to lump children with autism into a category of children with special needs. Read more...
Positive behavior support gaining ground!
11/08/11 09:19
Well folks... It’s finally happening... The Positive Behavior Support practitioners are actually gaining legitimacy!!!! Propaganda at its best and brought to you by the Faculty of Special Education at a respected university... Read more...
Child safety & autism: IBS in the making...
10/08/11 11:14
I r
ead with interest the article about training law enforcement, first responders and fire fighters to handle autism, and I agree that it is a great idea.
Safety issues are what give parents of children with autism the feeling that autism is a chronic crisis. But wait a minute... you can’t have a chronic crisis, can you? Read more...
Safety issues are what give parents of children with autism the feeling that autism is a chronic crisis. But wait a minute... you can’t have a chronic crisis, can you? Read more...
Internet and brain function: cause or correlation?
09/08/11 11:49
There has been much ado about Dr. Susan Greenfield’s comments regarding the link between internet use and autism (she very well may have been misquoted, but that’s not the point). A causal argument (that increased internet use CAUSES autism) is improbable due to early diagnosis. Read more...
Celebrities and autism "expertise"
08/08/11 12:16
I’ve been hearing about recovery from autism due to diet and vitamins for the last 20 years. Every decade there is a new parent advocate pushing the message about the gluten-free, casein-free diet and vitamin regimen (generally comprised of mega-doses of Vitamin B). The most vocal proponent of parents from this generation is Jenny McCarthy. Read more...
Is science coming back into fashion?
08/08/11 09:12
The Summer 2011 issue of the Autism Spectrum News was just delivered to my doorstep with the leading story, titled, Use Science and the Scientific Method When Considering Treatment. In fact, the most of the issue is devoted to this goal, which is a refreshing change from what comes across my desk and through my e-mail on a daily basis. Read more...
Finally, an "Inconvenient Truth" for Autism!
08/08/11 08:57
I just found out about a new film that is going to be fascinating viewing! The group just released the first of four trailers advertising their upcoming documentary, Medicare's Orphans, which is scheduled for release in mid-September. I watched the trailer, and checked out their website and am waiting eagerly for the film to be released! Here’s trailer number one to whet your appetite! Read more...
How it was that bad...
05/08/11 11:50
Has anyone collected statistics for the number of parents who get so desperate that they actually take their own and their child with autism’s life? I cannot believe how often this is happening. The latest story that I just read involved a psychiatrist and her son in the State of Maryland. Read more...
If I had a nickel for every eloquent person who claims to have autism...
04/08/11 11:36
I just read about a series highlighting people with autism writing about their feelings, stories, and earliest recollections. First, let’s stop and redefine for a moment, people! If someone with autism is writing their inner most thoughts in a coherent, easy to understand manner, they have just excluded themselves from the diagnosis of autism! Read more...
Clearly, we haven't yet left the dark ages...
03/08/11 18:44
I read today, with great sadness, that yet another person with autism has been murdered at the hands of an ignorant caregiver. I understand the difficulty in managing the behavior of a severely autistic person; Read more...
Another day, another so-called expert...
02/08/11 16:23
This morning, I opened my e-mail to find the latest way to part with $127.00 USD and “help” enlighten me about the so-called state of the science in autism treatment. Read more...
ASAT's newsletter has got me thinking ...
01/08/11 17:25
Of course, now ASAT has got me thinking critically about the various studies! Regarding the Citalopram study referenced in the newsletter, I think that this study is highly flawed (and the flaw is subtle). Read more...
ASAT's latest newsletter has arrived!
01/08/11 08:22
Today I opened my e-mai