What exactly is “Augmentative and Alternative Communication Device” treatment? It is defined by the National Standards Report as the use of “high or low technologically [sic] sophisticated devices to facilitate communication”. Allow me to translate: the use of pictures, photographs, symbols, books, computers/iPads to be able to communicate is apparently a definition of an autism treatment. If typing on a computer is a form of “communicative treatment,” then everyone who spends time on a computer is receiving “keyboard treatment.” Perhaps, we should get our health insurance companies to pay for our computers, since typing can be defined as a form of treatment!
There are two serious questions that need to be addressed: 1) Should children with autism be using these computers as communicative devices? If so, 2) Which children with autism should be using these non-verbal devices to communicate?
If a child has to use a device like this permanently, then we have failed to teach him/her to communicate as does 99% of the world. Some children may not be able to communicate without a device; however, I am of the view that a child afflicted with autism must have every opportunity to learn to communicate without reliance on either a device or sign language prior to introducing these alternatives. We don’t know whether the child can learn to orally communicate until we have provided the child a way to master the very difficult skill of oral communication. Only then should we resort to non-verbal ways of communicating.
That said, sign language and any kind of communication device should not be elevated to the level of treatment. Those behind the National Standards Report should know better!
Unfortunately, we haven’t yet convinced most of the medical community, particularly the pediatricians, that early screening is crucial. Although there are thousands of family physicians and pediatricians who are screening all their patients for ASD at well child check-ups, we have not convinced the profession as a whole that this needs to be done! To their credit, the American Academy of Pediatrics has recommended early screening for a long time and provides, free of charge, guidelines to all Pediatricians.
Regrettably, we still have pediatricians who recommend against routine screening! In the 2010 edition of Pediatrics, there are prolific pediatricians who recommend that children with autism not be screened! In June 2011, Dr. Geraldine Dawson, the Autism Speaks Chief Science Officer, published a defense of early screening to the journal Pediatrics. It is important to counteract their arguments in their professional journals. Until we convince the outspoken pediatricians that early intervention is key, we are fighting an uphill battle.
That’s why I urge everyone to download a copy of the above AAP Guidelines and hand deliver them to your own child’s pediatrician and family physician. We need to become advocates, not only for our children, but also for the next generation of children who have yet to be born. There are more parents of children with autism, than pediatricians and family physicians; therefore, we need to educate them relentlessly until they realize that what their professional association (AAP) recommends, the consumer also wants. Put simply, we need to drown out the naysayers through our sheer numbers.
Pay it forward!
"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.
It takes a special kind of hypocrisy for a government to consume fully a third of its entire budget for the purpose of funding a supposedly universal healthcare system, designed to meet everyone’s core health needs... but apparently not for your kid! You are still required to pay a third of your taxes, of course, for the single-payer British Columbia health plan that pays for everyone else’s health care, but alas, no soup for you!
Your kid’s autism is apparently not on the official fee-for-service list. Tough break.
Children afflicted with autism in Canada are entirely shut out of government-funded health insurance monopolies. Given that medically necessary autism treatment is not covered anywhere in Canada, it seems fair to say, “Hypocrisy, thy name is Canada!”
We’re very much looking forward to the release of this important documentary.
That would help rid us of the common, serious tragedy of children with autism going missing. Even today, there is a frightening story of a nine year old with autism who is missing and has almost 1000 people looking for him.
The GPS system needs to be made sufficiently flexible to transfer from one shoe size to the next, as kids grow. This technology can save lives and create piece of mind, particularly for parents whose children with autism have a habit of wondering off. Here’s where technology and innovation makes lives better for families and their children. The company is GTXCORP, and I bet they’d love to be introduced to a huge new market, about which they may be unaware, at this point.
To this man’s credit, he defines himself as having Asperger’s Syndrome; however, it is Autism Speaks that gins up the autism diagnosis when they say that this man:
“... struggled with undiagnosed autism for nearly 25 years. His diagnosis has enabled him to embrace his individuality and move forward. He writes and speaks publicly about his life with autism, hoping to inspire greater understanding and acceptance.”
Perhaps Autism Speaks intends to enhance a fundraising effort by labeling people with Asperger’s Syndrome as having autism; I cannot think of another reason why they tenaciously hang on to the complete fiction that Asperger’s Syndrome equal autism. I’ve always believed that truth is the best policy; it is disingenuous for Autism Speaks to stretch the truth about autism in this way, and something needs to be said about it. Autism is the most misleading diagnosis of this generation.
People who are eloquent, quirky, socially blind, but intelligent, self-diagnosed or diagnosed as adults do not have autism … they have Asperger’s Syndrome.
Why should Asperger’s Syndrome be regarded as a problematic term? I do not find it objectionable in the least. It allows for people who have severe social difficulties to recognize that they are different; however, those with Asperger’s Syndrome have huge potential to be productive, happy, independent adults. A diagnosis can be the first step to treatment; however, if a person with Asperger’s Syndrome is called autistic, that is confusing and misleading to the person with Asperger’s Syndrome, never mind that person’s family, other families of children with autism, and the public at large. By calling people with Asperger’s Syndrome autistic, it is a complete misrepresentation of what autism really is, and what it is not. The label of autism is also extremely stigmatizing and can pose an unnecessary barrier with which the person with Asperger’s Syndrome must contend. A counterfeit autism label is also a misrepresentation of Asperger’s Syndrome.
If the psychiatric community deems it so, a preferable option to eliminating the Asperger’s Syndrome diagnosis in the Diagnostic Statistical Manual of Mental Disorders, is to eliminate the “High Functioning” autism description.
If you are sufficiently high functioning to:
1) not be diagnosed until adulthood,
2) be sufficiently independent to live on your own, and
3) verbally advocate for your needs without an interpreter?
... then guess what? You do not have autism; you have Asperger’s Syndrome, and you should rejoice! You have lots of potential to lead an independent life where you are the master of your own destiny and need not rely completely on others to help you navigate your way through life. Embrace your Asperger’s Syndrome!
An autism service provider has actually certified the TradeWinds Island Resorts with wonderful weather as being Autism Friendly! This resort is now trying to court our business. What a difference a decade makes! We need to support the hotel, for altruistic reasons only, of course!
How is it that a country that is one of the affluent G-7 nations and purports to be civilized, can treat its most vulnerable citizens as if they have no rights? Well, the truth is people afflicted with autism (and disabilities more broadly) in Canada, have no constitutional or legal protection against disability based discrimination. The Canadian Charter of Rights and Freedoms is clearly a “Charter of Suggestions,” based on its failure to protect equality rights of children with autism. To verify this contention, one need only see the various Auton court cases, British Columbia Supreme Court 2000, British Columbia Court of Appeal 2002, and the Supreme Court of Canada 2004.
In Canada, there are no laws in place to protect people with disabilities; politicians rely on the “goodness” of people in positions of power i.e., the unelected, permanent bureaucracy. Then, when things go wrong (which they are apt to do when people instead of systems are in charge), the politicians feign surprise and outrage!
The solution is straightforward. Canadians need to demand the following:
1) Every province must set up an Individualized Funding mechanism so that the family and the disabled person become the consumers (and can change service providers at their discretion). This will cut down on group home abuses dramatically.
2) Canadians with all disabilities need to demand from their politicians the establishment of a Canadians with Disabilities Act. They need only look at the structure of the Americans with Disabilities Act for guidance regarding the framework of national legal protection against disability discrimination.
3) Parents of disabled children need to demand an Individuals with Disabilities Education Act. This can be patterned after the American IDEA, which has helped parents tremendously.
This will be difficult in Canada, because the unelected bureaucracy leans heavily against equality rights for persons with disabilities. More rights for aggrieved citizens means less fiat authority for provincial governments. Until people with disabilities in Canada are considered of equal value, abuses will continue coast to coast.
My experience in fighting the autism wars over many years, has proven the Canadian technocratic elite to be quite arrogant; they think they can micromanage the lives of the disabled better than families can. This needs to change, because appropriate laws, and the consequences of breaking those laws, will always be more protective than empty platitudes about caring, and occasional outrage when tragedy strikes.
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. If this study will give support and legitimacy to proper transition, I’m all for it; however, the researchers need to know that the transition to school of children with autism is difficult due to two things: 1) ego and, 2) turf wars.
Here’s what good transition looks like: it is seamless, meaning that the consultants and therapists working with the child in a behavioral treatment program (whether home or school-based) are permitted to follow the child into the school system. Unfortunately, due to the outsized ego of the school system’s special educational professionals, there is no way that the majority of schools will allow private consultants to continue to develop an autism education plan for that child while at school. In addition, due to union turf wars, there is no way that most schools will hire the therapist who has worked well with that child prior to kindergarten, so that they can be the child’s aide in the school.
Consequent to these structural problems in public education, we can safely assert that smooth transition to school has nothing to do with the child (as I have discussed in a prior post). It has everything to do with the adults that can’t compromise on their interests to accommodate children afflicted with the most severe psychiatric condition catalogued in the Diagnostic and Statistic Manual of Mental Disorders(DSM).
So, I have a word of advice to these researchers. Instead of testing the children, why don’t you research the organizational culture of the school system to get an understanding of why transitions do not work for children with autism? That should give the researchers a renewed understanding of why there is so much U.S. litigation (not to forget a landmark Canadian case) when it comes to autism and the school system. Put simply, since the problem of smooth transition to school is with the grown ups, let’s study that pathology instead of the kids.
The Association for Science in Autism Treatment (ASAT) has done a wonderful job cataloging the problem with education of children with autism across the United States, so there is no need to add to their analysis here. The key point is that we already know what to do. Now, we need to do it! We need to:
1) train the current and future teachers in best practices, and
2) not accept any treatment or technique with no science backing it up.
I look forward to more studies that grade teachers who work with children with autism, since that is the only way to raise the academic and treatment bar. One hopes that these studies find their way to other countries (such as Canada) where it is still considered unseemly to actually evaluate teachers when it comes to children with autism. Parents in all countries need to demand it!
At first glance we can all feel good that bilingual families don’t have to restrict themselves to only the host language; however, upon closer inspection, is this really wise? Don’t we want to make sure that the child communicates best and is easy to understand in the host culture?
The Peterson et al. (2011) study matched bilingual children (Chinese and English) with monolingual children, and tested the children over a three week period, administering four tests. Note that it is impossible to randomly assign children to bilingual or monolingual groups, so matching is the best one can do; however, that said, the matching is problematic insofar as one can never say that bilingualism caused the language delay, or did not cause the delay.
Each child in the study had an autism spectrum disorder diagnosis. In my view, the researchers should have made sure that each child had autism, and not P.D.D.NOS. The children in the study were between the ages of 3 1/2 and 6 years of age, with a mean of almost 5 years of age. Each child already had at least 30 words across both languages which means that many of the children had much more language than 30 words. What was the mean number of words that the children had? Did a couple of children statistically skew the results upward? The study does not inform on this. In addition, this study did not include children with autism that have no language, which is a large percentage of children with autism prior to inclusion in behavioral treatment programs.
In short, these researchers are claiming too broad a finding. They claim that, “The results of this exploratory study suggest that bilingualism does not negatively effect language development in young children with ASD.” I would take these results with a grain of salt. In fact, I would discount results amongst children with ASD that are not extremely high functioning. The last thing we need to do is further complicate language acquisition for children with autism by giving them twice the amount of complexity that typically developing children generally avoid.
One hopes this type of study does not lead to any sort of mandatory requirement for bilingual education for ASD children in school. This is a particular risk in countries where bilingualism is official policy and could be filed under the rubric of “the law of unintended consequences.”
As most of us already know, one of the important things that people working with children and adults with autism need to do is fight against the stigmatization that comes along with this condition. Children with autism need help to integrate with their peers (even those who are severely affected) whenever possible, to be able to experience the great things available for people at every stage of life. That’s why a child of six years old should be wearing clothing with a Disney movie character on it, and a child of twelve years old should be looking more like a Rihanna or Justin Bieber wanna be. In other words, it is very important to not inadvertently infantilize a person with autism.
Steve Jobs helped out with this considerably! From the first laptops for nonverbal kids in the classroom , to the iPod Shuffle or Touch with tiny ear bud headphones; these are perfect for blending in when walking down the street or for tuning in at a restaurant with the family, being cool and groovy while tuning out the adult conversation at the same time. This may simply keep the child engaged, but to the outside world it allows families to go out together and not feel self conscious. In addition, Apple’s latest iPad has transformed the non-verbal child with autism into “ubber” cool since how many young people actually have an iPad?
Thank you Steve Jobs, for making the world a “hipper” place for children with autism!
From Bettelheim in the 1950s to the latest incarnation of MDs who flog this junk using theories that have no data, there are a few things that must be emphasized. First, when a child from birth ignores everyone’s presence, cries incessantly and is up all night for years on end, to the point where the mother is barely functioning, the child’s autism is the CAUSE of the mother’s condition, not the other way around! In other words, the mother’s stress or depression does not cause autism... autism causes maternal stress and depression. Put simply, these professionals do not understand that the causal arrow goes the other way! You’d think that after a decade of post-secondary education, these so-called experts would have figured that out, but apparently not.
Also, before doctors and researchers venture into the murky waters of autism, I would suggest they read a few peer-reviewed journal articles that have been written in the last decade, and also walk a block, not a mile, in the shoes of a mother of an untreated child with autism.
Second, a theory is useless without any data supporting it. Put simply, show us the data, or put a sock in it! Since these big thinkers seem happy to posit theories that they have no plans to test and are, therefore, perennially without data to support them, let me have a go, and posit one of my own. Doctors and researchers with little talent and less integrity, tend to gravitate to fields where there is no known cause and no known cure – like autism. That way, B.S. can be purveyed with impunity, since few folks actually expect rigorous scientific standards of conduct (i.e., proper theory construction, hypothesis development, experimental design, testing, data collection, statistical analyses, presentation of results, and interpretation). In other words, where autism is concerned, it’s still the Wild West of science. However, the good news is that as we learn more about the true neurobiology of autism, these ignorant pretenders will be relegated to the Flat Earth Society where they belong.
Prior to solving the problem of sleep deprivation, it is first important to decide whether the sleep disturbance is a side effect autism rather than a symptom of typical infant or toddler behavior. Once it has been defined as problem specific to autism, you can ignore the libraries full of books pontificating about generic sleep disturbances. Forget about the Ferber Method, and the Sears Method and ignore all those experienced with typically developing children giving you advice. They have no idea regarding what kind of difficult challenge you face being chronically sleep deprived due to disability, for years on end, is a special kind of hell.
Let’s get to work.
I’m assuming that your child is out of a crib at this point and you are having difficulty establishing a night-time routine. If you have a behaviorist involved, that’s great; however, if you don’t, this is a suggested way to tackle the issue.
First we need to work on bedtime:
1) Make sure there is nothing in the child’s room that could in any way injure him (i.e., sharp edges, heights he could fall from, unprotected electrical sockets, windows from which the child can open and leave). It is crucial to make sure that the room is 100% safe since you cannot achieve down time with your child in his room, without supervision, if you doubt his safety.
2) Choose the same time every night to put him to bed and create a very ritualized bedtime routine. Then leave the room.
3) Place a sturdy baby-gate on the door and attach a Plexiglass panel so it is impossible for the child to climb the gate.
4) Keep the door to the bedroom open so that you can hear what’s going on (and so you do not feel like a neglectful parent).
5) If the child tires himself out and falls asleep on the floor, you can then carry the child to his bed. If he wakes up when moved, leave him on the floor to sleep. If this becomes a pattern, put a mattress on the floor.
So far, what have you done? You have preserved two to three hours in the evening where you are close to “off duty.” This may or may not have solved the sleep problem, but it has given you some time to unwind or sleep.
Now we need to tackle sleep:
1) Try it the natural way
If the child is toilet-trained and awake for hours on end during the night, you’ll have to get up to let him use the bathroom. Once that is done, you can let the child stay in his room awake and you can go to sleep. At some point, the child may learn to sleep. But then again, he may not. If he is not learning the natural way, you will become desperate because you’ve been sleep deprived for too long (which is not sustainable over the long term). I did it for seven years!
The state of the science in terms of melatonin is promising; however, since melatonin is a naturally occurring hormone, and not a proprietary drug, there is not the same financial incentive for the producers of melatonin to test its efficacy as it specifically relates to autism and sleep.
Fortunately, there have been a few studies (in 2006, 2007, 2009, and 2011) that demonstrate melatonin as being effective for many children. There are two kinds of melatonin generally used. The first is sublingual, which can crushed and added to a variety of preferred foods such as ice-cream, honey, or jam; the second type is a time-release capsule which cannot be crushed; the child will need to swallow it whole.
The above studies were all designed so that everyone, including the study investigator, was blind to study randomization. In other words, no one knew which child received the melatonin and which child received the sugar pill. Their results are promising; however, melatonin was not effective for every child.
If you do decide to try Melatonin, I strongly suggest that you do it under the supervision of your child’s physician, since side effects, although not common, are possible. Melatonin is not a magic bullet; however, if you are fortunate to have it work on your child, you may actually regain your sleep without having to use prescription drugs. Once you are guaranteed to sleep through the night, life will become much more normalized, relatively speaking, for you and your family.
This conversation misses the mark. Unfortunately, there are a small number of children with autism who engage in self-injurious behavior; however, the point is not that teachers need to restrain children with autism in a particular way. The larger question is this: Why are children with autism not given treatment for their self-injurious behavior prior to being put in a classroom? That child should not be restrained in a classroom -- that’s not going to get rid of his self-injurious behavior. In fact, it may escalate it! By the time the system resorts to physical restraints, it admits to having profoundly failed.
This child needs one-on-one treatment to extinguish the self-injurious behavior completely. What kind of life is it for the pre-teen to have no way to remove that behavior from his repertoire? The fact that the child is twelve years old and is still self-injurious exemplifies the complete failure of the educational system in terms of children with autism.
If science had not progressed to the point where we know what to do, we could all throw up our hands and say, isn’t that sad; however, we know what to do and have known for some time. In 1996, Richard Foxx wrote the important article “Twenty years of applied behavior analysis in treating the most severe problem behavior: Lessons learned.” Apparently, we’ve ignored those lessons. We’re either too stingy or too short-sighted to provide that child with the treatment he needs – – at our peril.
What the school system must do, and what the parents would be wise to fight for, is to hire a highly qualified Behavior Analyst (with an expertise in self-injurious behavior) to work with the child individually to extinguish all self-injurious behavior.
This child is twelve years old. Without treatment, his world will begin to shrink, and his future will not be rosy; however, with treatment he will have the opportunity to reach his potential and, most certainly, a more fulfilling life. Don’t we owe it to him?
Autism is one of the few disabilities where classroom aides currently learn on the job from people who have no idea what they are doing. A medically fragile child has a nurse tending to his/her condition under the supervision of a doctor. Would we have it any other way? No, we wouldn’t. Imagine if deaf children had to communicate with teachers who began the year not knowing how to sign. Almost everyone would agree that the ability to sign should be a prerequisite for teaching deaf children who sign. So why is it that school systems think nothing of hiring generic aides who know nothing about behaviorism to interact with children with autism?
It is time for parents to demand the bare minimum: trained aides for children with autism who work under the auspices of a case manager -- a Board Certified Behavior Analyst with expertise in autism. Is that really too much to ask?
• These previous guidelines are now outdated because reviews were completed before the turn of the 21st century.
• The reviews did not include all educational and behavioral treatment studies for a broad age range or a variety of ASD diagnoses.
• Evidence-based practice guidelines have evolved...”
I saw the above statements, and gave them the benefit of the doubt until I started reading and realized that the National Standards Report is a slick attempt to legitimate short-cut science for children with autism.
Today, I’m going to take Pivotal Response Training (PRT) as an example.
The NSP erroneously claim that PRT is an Established Treatment based on fourteen (14) studies. That sounds great until one understands the following about these studies:
Half of the studies came out before the New York Report. There goes their “evidence-based practice guidelines have evolved” argument since the NY Report had access to these studies and did not deem PRT best practices.
None of them compare their economic treatment against best practices which is Intensive Behavioral Treatment (IBT). If they’re so confident in PRT, why do they avoid going up against IBT? A comparison may be inconvenient for their entire research program since it is difficult to receive funding if your research program has little promise; therefore, it is best not to compare.
What evidence do the fourteen (14) studies provide for PRT to be considered an established treatment by the NSP?
The PRT folks are very involved in training free labor i.e., parents and peers. The first six (6) studies listed below emphasize the purported efficacy of training parents and peers, rather than creating the best outcomes from the treatment itself:
1988 - Training parents to use the natural language paradigm...
1995 - Effects of peer-implemented pivotal response training...
1997 - Multiple peer use of pivotal response training...
2007 - Parent-implemented natural language paradigm...
2008 - Recess is time-in: using peers...
2002 - Parent education for families of children with autism...
One (1) study looks at child demographics associated with outcomes. That is not a study in efficacy but rather the ubiquity of autism and the various underserved demographics.
2007- Child demographics associated with outcomes...
Now we are left with seven (7) studies upon which the NSR claim that PRT is an established treatment. These studies have collected data on a sum total of 20 children, in a short term study, with NO comparison to Intensive Behavioral Treatment, which is the treatment they must demonstrate is less effective in order to ethically replace IBT with PRT! The seven (7) studies are below:
1987 - A natural language teaching paradigm... Two (2) children in the study.
1992 - Language intervention and disruptive behavior... Three (3) children in the study.
1993 - Treatment of social behavior in autism... Two (2) high functioning children, 13 and 16 years old.
1995 - Teaching symbolic play skills to children with autism... Seven (7) children in the study.
1995 - Effects of sociodramatic play training... Three (3) children in the study.
2003 - Teaching children with autism self-initiations... Two (2) children in the study.
2007 - Using perseverative interests to elicit joint attention behaviors... Three (3) children in the study.
With such a small group of poorly designed studies, done on so few children, without a decent comparison group, over such a short period of time, how can the National Standards Report come up with such a misguided conclusion, unless they were attempting to replace the recommendations of the New York Report? The larger question I keep asking myself, over and over again, is: Why do so many continue to brazenly attempt to short change children with autism when it comes to effective -- but costly -- treatment?
A piece of advice, stemming from a lifetime of experience in confronting the rationing of treatment for children with autism: be very wary of any theory or study that purports to have a conveniently economical way to ameliorate the condition of autism. If it is free, or inexpensive, generally that’s what it is worth, irrespective of how many national standards reports are published!
I have no issue with the theory that calcium is very important for the body in a variety of ways. In fact, a recent report on the importance of calcium was published earlier this year. The issue in this case is with a) how this theory is being tested, and b) who is doing the testing.
The theory put forth by this group of proponents is that a daily recommended dose of calcium from natural coral will improve a child with autism’s focus, sleep patterns, general improvement and decrease the amount of self-stimulatory behavior. These researchers have done a study on calcium for those of us who are skeptical. Unfortunately, this study has not been published in a peer-reviewed journal on nutrition, medicine or psychiatry; rather, the study has been published in an education journal whose target audience is action research for elementary and secondary school educators. This is akin to the Journal of Aromatherapy doing a study on bipolar disorder -- clearly out of their league.
There are a large number of flaws with this study; I will mention only two of them here. First, everyone knew which group the child was assigned to, and second, the results were partially based on parental reporting (which should never be allowed). In fact, it was reported in the study that parents of the group that took the calcium supplements took the supplements themselves and reported feeling better as well.
Now that this month’s new treatment has been introduced, I can’t wait to see what November brings.
Then begins the quest to find a competent early interventionist. Here’s where parents often get into trouble. Anyone can put out their shingle and call themselves a behaviorist or an autism interventionist; however, not all behavioral interventionists are created equal. There are bona fide autism treatment professionals and then there are the pretenders.
What have parents done to attempt to protect their children? Some have essentially branded home-based intensive behavioral treatment by using the term “The Lovaas Method” after the famous psychologist who first published his impressive intensive behavioral treatment results in 1987. Parents knew that if they used behaviorists who studied under Lovaas, they would be more likely to access autism treatment using an updated behavioral autism treatment protocol based on the research of Dr. Lovaas.
The branding of intensive behavioral treatment is considered controversial by some. There are many competent behaviorists who also use a modification of the protocol that Lovaas developed; however -- and importantly -- they do not work under supervision of LIFE, which is the organization that continues Lovaas’ legacy. So... what’s a professional to do, and what’s a parent to do? The issue of finding a bona fide behavioral autism treatment professional needs to be fixed!
Here’s how we solve it.
There must be a special certification of behaviorists who have extensive expertise in autism, and have established credentials for the treatment protocol with the most science behind it in terms of autism. These cannot be generic behaviorists. Put simply, someone who can help an adult stop smoking does not automatically have the expertise to program an intensive behavioral treatment program for children with autism.
About a decade ago, I spoke at length with both the CEO and a board member of the Behavior Analyst Certification Board (BACB). I explained this problem. They told me that there was talk of creating a specialty for autism; however, it would take a long time and it was complicated. We’re all still waiting...
We need the following:
1) Those who are working directly with the treatment protocol designed, tested, and repeatedly replicated by Lovaas in his research, need to be part of this process. They need to work directly with the BACB to create an autism treatmet specialty and it needs to be done yesterday!
2) The BACB need to design the specialty to make sure that all those behaviorists practicing Positive Behavior Support are barred from claiming that they offer bona fide Behavioral Treatment programs for children with autism, since what they offer is philosophy rather than science.
Why should the Behavior Analysts care about establishing a specialty for autism? It’s important because there are behaviorists who are working on basic problems such as toilet training, and failing. Over the last forty years, the field of behaviorism has progressed beyond these types of problems, yet there are parents of children with autism working with certified behavior analysts who are unable to solve autism related problem in a timely fashion.
In short, behavior analysts are getting a bad name in the autism community. Incompetent behaviorists will lead to decreased reliance upon their services. Ultimately, this is going to harm children with autism, because the literature and government health agencies have made it abundantly clear that intensive behavioral treatment is best practices for children with autism.
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.
In this case, a clinic in Panama injects stem cells intravenously or into the spinal fluid of children with autism. The parents go back for this treatment year after year, and as usual, the treatment is sold through testimonials. Prior to understanding autism and the brain, they are experimenting...
In contrast, responsible neuroscientists are researching autism through the use of stem cells. They are not shooting up children with stem cells; they are using stem cells to better understand the condition, and thereby, move closer to a cure. Below is Dr. Ricardo Dolmetch interviewed by Dr. Thomas Insel, of the National Institutes of Health, about his research in autism and how that will lead to biomedical treatments.
What’s encouraging is that Dr. Dolmetsch is a reputable neuroscientist who is also a parent of a child with autism; obviously, his motivation as a parent is great. The added bonus is that Dr. Dolmetsch actually has the skill set to potentially come up with a cure for autism using the scientific method, rather than engaging in dangerous experimentation like many others in the world. Let’s hope that this father of a child with autism continues to receive funding for the autism research he is doing, and that one day our children will benefit from his research.
Some of you may be thinking: “Is this realistic?” Yes, it is. Whether your child has Asperger’s Syndrome and can be completely independent at work, or is very severely affected, this is a topic that is worth considering. Furthermore, for those children who have benefitted tremendously from early intervention, this is a topic that is going to become more relevant as more children graduate high school with many marketable skills.
There are many different jobs people with ASD can do. Moreover, there is dignity to completing a job and getting paid for it. At one end of the spectrum are people who can get a job on their own, but may need a temporary job coach to help them learn the social rules regarding the work place so that they don’t inadvertently alienate coworkers. Then there are others who need to be placed in a job, taken to the job-site, coached on how to do the job, but can do the work independently, once trained. Even people who are severely autistic can be taught to work at a job in a team e.g., delivering newspapers. I recently came across an article about a determined transition coordinator, Ms. Stanton-Paule, who is transitioning children with autism into paid employment. We need an army of people like this woman!
Working and getting paid for it is important because it further includes people with autism into the fabric of society. I think that they deserve that chance, and whether they are employed full-time, or part-time, they need to be able to define themselves to the world as having a job and having the perks that go along with the job e.g., money.
Recently, I came across Aspiritech, a Chicago startup that is hiring adults on the autism spectrum to work as software testers. That’s great news because there are many talented people with ASD who are very employable in the computer field.
Here are companies that hire people with an autism spectrum disorder.
Aspiritech hires people in the United States:
Autism Works hires people in the United Kingdom:
Specialisterne hires people in Iceland, Denmark and Scotland:
Passwerk hires people in Belguim:
Laura Shumaker, wrote an interesting article on this topic. She lists a variety of non-profit organizations that work on the problem of employment for people with ASD, in addition to the organizations listed above. I think the solution is going to ultimately come from for profit companies that understand the benefit of hiring people on the autism spectrum. Not having to rely on government funding is preferable, since it is the profit motive that will keep these people working, not a benevolent bureaucrat.
Other possible employment ideas (across the range of capabilities for people on the spectrum) include the following:
• Computer Programming
• Graphic Design
• Musical Transcription
• Book Cataloging (in libraries and used book stores)
• DVD/Video Cataloging in Video Stores
• Delivering Papers
These are jobs of which I am aware; however, I’m sure that there are many more not on this list. Please contact me if you have a lead so that we can broaden that list and provide more opportunities! Above is Elance, a Freelance website that has lots of opportunities available, depending upon skill set.
A year and a half! No, that’s not a typo. Why would anyone hold up as a model to parents of children with autism a study where the researchers are manifestly incompetent and their intervention is functionally a failure? Why race to the bottom?
It is important for you to know that your child is either not toilet-trained because s/he doesn’t understand or have the skills yet OR s/he understands but does not want to change a behavior that is already comfortable. Either way, you will need to use the same technique to successfully toilet train .
There is no reason that your child cannot be toilet-trained; however, it may take different skills from the ones that you already possess. Luckily, there are a couple of resources that will help you along the way.
The best method available was pioneered by Nathin Azrin and Richard Foxx in 1971 (note: the academic terms for developmentally delayed people were different back then). They were originally working with developmentally disabled adults who were institutionalized, and these researchers were wildly successful. They also did research on typically developing children and wrote a best-seller that is still available today [Toilet Training in A Day]; however, their work on toilet-training children with developmental delays is much more useful for our purposes. Since their original research in the 1970s, behaviorists have moved the field forward through research and utilized some of the techniques first pioneered by Azrin and Foxx. Now there are practitioners in the field of Applied Behavior Analysis who can help you toilet train your child based on these techniques. You may be able to do this yourself; however, it can be difficult!
First, I recommend finding a Board Certified Behavior Analyst (BCBA) with expertise in autism to develop a program for your child; these professionals exist in every major city, in many small cities and towns in North America, & across the industrialized world.
In addition, there is a devise that you can purchase to help you in your toilet-training program called the Night Hawk. It is a high tech. wet alarm that works wirelessly and sends out an audible reminder. Although intended to be used at night, it can be used at all times to make your toilet training program more effective. The Night Hawk helps the child understand the connection between urination and running to the bathroom to get the alarm to stop. You may not have to use this device; however, if your child is getting ready to enter kindergarten and is still not toilet-trained, you might want to think about using this system since it can speed up the learning process considerably! This concept was first devised and tested in 1971, but not available on the market until decades later.
It is very important that a child with autism be toilet-trained prior to entering kindergarten because a non-toilet-trained child will generally be stigmatized. The goal is always to create a world where the child can participate as much as possible in the wonderful experiences that typically developing children are provided, and toilet-training is prerequisite to that.
With expertise and perseverance you will succeed. Importantly, the process should take two weeks or less, not a year and a half!
Make sure this doesn’t happen to your child. As a parent of a child with autism, you need to make life less stressful by setting up systems that ensure your child’s safety, without having to expend too much energy. Rest assured, there are active and passive ways to minimize your stress levels and maximize your child’s safety!
• Alarm your home so that every time a window or door is opened, you can hear it through the warning beeps of the alarm system. This can be programmed to occur even when the system is not armed. The beeping allows you to monitor your child without necessarily having to see the child every moment. The minute you hear the beeping, then you can act (just make sure that you don’t run into your spouse since he will be doing the same thing!).
• For a relatively modest cost, a GPS child locator device like a Wherify watch (with monitoring) is a huge technological leap. This is a financial commitment but if your child is a wanderer or an escape artist, it is definitely worth your peace of mind.
• Teach your child how to swim. There is probably someone in your community who teaches swimming and understands how to efficiently teach your child to swim. The local pools and/or community centers are generally not the way to go. Ask around to find the person in your community with the reputation of being an effective swim teacher. Once your child is water safe, your worry about drowning disappears.
• Lobby your school district to erect fences around the school yard with locked gates (which would protect the typically developing children from malfeasance as well). The child would then need to leave through the front door, which is often near the front office, generally manned by an adult and further away from the playground.
• Inform your school that the child is a flight risk and that you hold them 100% accountable for your child’s safety.
• Make sure that your child is being supervised at all times by an adult, and not through the “buddy” system. The “buddy” system is bureaucratic speak for: “We don’t have enough staff, and the staff all want to eat at the same time. In order to make the staff happy, we have a child who is marginally older than your child, designated to take responsibility for the physical safety of your child. But, don’t worry, everything is under control... We’re professionals!” Please don’t countenance the buddy system for your child.
Once you take care of your child’s safety needs, your stress levels will diminish and the number of crises should decrease as well. Let’s make sure that the remembrance web-site for wandering children with autism does not grow by even one child.
There have been several books written on the plethora of treatment options parents must evaluate. Recently the ethicists have joined the conversation. A new article, Treatments and Services for Neurodevelopmental Disorders on Advocacy Websites: Information or Evaluation?, addresses this very topic. These researchers analyze major advocacy websites and confirm what many parents of children with autism already know: “Treatment information is primarily targeted at families and is overwhelmingly encouraging, regardless of the type or conventionality of treatments” (p.1). No disagreement there. Seemingly every month a new unsubstantiated treatment for autism is introduced. It’s the Wild West.
Then things go off the rails. They say, “We conclude with recommendations for new partnerships between government-funded health organizations, advocacy and investigators to make more transparent the role of online information in informing treatment options and improving the evaluation of information.” Ouch! Are they nuts? This conclusion is hugely problematic. They seem to understand the problem posed by the overload of Internet information, but they badly fumble the solution.
These ethicists do not understand that parents have utterly lost faith in the very group that the ethicists are recommending to provide evidenced-based standards for autism treatment! The only way to get back the trust of parents of children with autism, particularly when it comes to autism treatment, is to make sure that government-funded health policy researchers stay the hell away!!! The ethicists may have no idea that over a decade ago, health policy researchers funded by the same organization that funds these ethicists’ study (the British Columbia Office of Health Technology Assessment and it’s sister organization the Canadian Institutes of Health Research) were caught with their pants down in court presenting “Junk Science” to a Supreme Court judge, presented during the Auton case. The judge ruled (paragraph 48) that government funded autism research is “...obviously biased” ... “that detracts significantly from its usefulness!” Science for Sale in the Autism Wars, presents detailed evidence regarding the hatchet job they did on intensive behavioral treatment. This should forever ban Canadian health technology (and anyone funded or affiliated with same) from the realm of credible research and academic inquiry where autism is concerned.
If these researchers want to clean up the Internet, they desperately need to clean up their own house first!
About the Puzzle Ribbon Project:
Puzzle Ribbon helps families collaborate with self-insured employers to offer Autism benefits. They model their approach on successful programs at companies like Microsoft where employees and employers work together to implement and manage an affordable autism health insurance benefit. Support for Puzzle Ribbon is provided by the National Science Foundation. If you are a parent working in a large corporation with self-insured employers, this is definitely an organization worth exploring!
Many children with autism have full blown obsessions. Obsessions can actually be good, as long as they are steered in the right direction. The key is to make the obsession broad enough to include activities that are functional in society. If these skills are not properly channeled, then they become dysfunctional to the person with autism. So, for example, if a child loves to sing, put her in music! It is not functional for her to simply sing the same songs over and over again; however, it is useful for her, at a minimum: a) to learn about music, including reading music, and b) to learn how to take direction and sing in a choir or learn an instrument. In other words, take the obsession -- yes... it may be an obsession -- and work to point it towards an area in society where your child can find a place!
Managed properly, obsessions can be great for mainstreaming, and will develop skills that at a minimum can provide a leisure activity. In a best case scenario, a properly directed obsession can lead to gainful employment!
In this 20 minute interview, Jean gives us the story behind the story, and delivers insight into the plight of children with autism in Canada. This is a story well worth following!
Be sure to check out the various trailers for the film, at the links below:
This is where Autism Speaks does their most important work, and they’re calling out for your help! Here’s an article that gives you the step-by-step way you can help get this important legislation reauthorized. This is crucially important because serious money for research is the only way we are going to develop more efficient autism treatments and find an eventual cure!
The house votes tomorrow, Tuesday, September 20th!
Here is a recipe for successful mainstreaming:
- First, choose a highly structured activity and be prepared to pre-teach the routine. A structured dance or gymnastics class is a good place to start. Get ready to positively reinforce your child for learning these routines by creating a reinforcement schedule.
- Second, get permission to go by yourself and learn the routine. If you can get permission to video-record the session, that’s a bonus.
- Third, teach the child with autism the routine at home until the child understands all the steps and/or circuit.
- Fourth, go with the child prior to class and lead the child through the lesson before it starts. If you can get the instructor to do this with you, that’s even better. If the child is older, then give him or her a few private lessons prior to introducing them to the class lesson.
- Fifth, on the day of the lesson, have someone who looks like an instructor pretend to help all the kids (but actually be there for your child). Ask to borrow a t-shirt from the facility so that the aide or therapist blends in. If you are not allowed to have someone else be there, then put the t-shirt on and help your child.
How do you get permission to do this? Well... you must refuse to take no for an answer. You need to meet with the head of the program and show the person in charge all the various steps you plan on taking in order to make this a wonderful experience for everyone. You must be very positive and sell the idea to them. Once you come with such a well thought out strategy, it will be unlikely that they will get in your way; however, in the case where you do encounter a closed-minded person, here is a sample of possible objections you may encounter and how to deal with them:
Objection: “We’d love to have this happen; however, we just don’t have the resources.”
Answer: Oh, I completely understand. That’s not a problem because I will be supplying the helper completely at my expense. She will be volunteering.
Objection: “We have a wonderful program for all the special needs children that we think is much more appropriate for your child.”
Answer: We actually would like our child in the class with the typically developing children because we are looking for typically developing peers for my child to model.
Objection: “Our insurance doesn’t cover people who are not on staff.”
Answer: I completely understand. Let’s use the same insurance that you use for volunteers applied to my child’s helper.
If you get nowhere, at some point you may want to introduce them to your lawyer and the Americans with Disabilities Act, Canada’s Charter of Rights or comparable legal protections in your jurisdiction. Once the studio or community center has a successful mainstreaming experience, they will be more open-minded the next time and the next parent that follows you will have an easier time of it as well.
Good luck and remember... failure is not an option!
By sixth grade, most schools offer beginning band. If you can pre-teach the basics of an instrument the year before introductory band is available, then your child enters band considerably advanced relative to his or her peers and can probably learn with the rest of the class without having to be pulled out. Band classes typically progress very slowly. Since you’ve spent the last couple of years using the piano to teach rhythm, dynamics (e.g., louder, softer) and reading music, why change or add an instrument? It’s simple: piano is not typically part of a sixth grade band, particularly if it is a marching band! Although one can adapt the band for piano, I would not recommend it. That’s not a fight worth fighting.
Which instrument to choose? Alto saxophone or clarinet are the two best choices for several reasons; both instruments are generally played in a group of musicians playing the same instrument. There is rarely only one alto saxophonist or clarinetist in a band. In addition, reading the music is easy because the notes are only on one line rather than two (unlike piano in which the treble and bass clefs must be read concurrently). Since your child can already read music for the piano, reading music for a saxophone or clarinet will be considerably easier. An added benefit when it comes to autism is that when playing, both child’s hands and his or her mouth are engaged; therefore, there is less temptation to engage in self-stimulatory behavior. The saxophone and clarinet allow the child to join both a marching band and a stationary band. If you choose the saxophone, concert band and jazz band will be open to your child in high school; if you choose the clarinet, concert band and orchestra are opportunities open to your child in high school. You’ll be happy to know that sound is not extremely difficult to produce from either of these instruments. Therefore, the learning curve is not inordinately steep.
Once your child is competent playing a band instrument, you’ve achieved the following goals: first, you’ve found a great peer group for your child. Generally speaking, the nice children gravitate to music. Second, you’ve established a wonderful, structured mainstreaming venue throughout the high school years. In addition, you’ve created an appropriate leisure activity that will last a lifetime. You’ve also manufactured a valued role for your child during the holidays since you can teach the child a holiday repertoire that will be requested year after year by a variety of people (i.e., family, friends, religious institutions). Finally, you’ve created opportunities that may lead to a possible career.
So... what are you waiting for?
For your enjoyment and inspiration, here are recordings of a child with autism performing at variety of ages:
Song: Rustles of Spring
Age: 14 years old
Song: Rialto Ripples
Age: 15 years old
Song: Polka Dots and Moonbeams
Age: 17 years old
Here’s a strategy that will most certainly benefit a child with autism: from pre-school until elementary school graduation, invite the entire class to exciting parties for every occasion and turn the home of the child with autism into “the fun” party place. Make sure that the activities are reinforcing and highly structured, the junk food is plentiful and the party is short (two hours maximum). Use any excuse to organize a party (whether Summer, Halloween, birthday, or other holiday). Make sure that at least some of the parties are in the child’s home in order to give parents a chance to see a typical family with a child who may be somewhat different. The more the family of the child with autism normalizes the environment, the more sanguine the parents of typically developing children will be; consequently, the greater the likelihood that those parents will allow their children to attend play dates with the child challenged by autism.
Not only will this strategy generate invitations to other children’s parties, it will also open up the possibility for reciprocal play dates at the typical child’s home (with an autism therapist shadowing). An added benefit to the party strategy is that the typically developing peers will start to become emotionally invested in the child with autism when they are at school together, which over the years, improves the prospects of developing a typical peer group for the child afflicted with autism.
What do we do about the parents of the children who do not attend and may be too rude to RSVP? In fact, they have just done the parent of a child with autism a great favor: they’ve failed the litmus test! In other words, they have lost the privilege of spending time with the child challenged by autism, and have forfeited a fascinating, enriching learning experience for their child.
Life is too short to waste on people who are not worth it!
Despite some parents’ ill-mannered behavior, it is wise to continue to invite all the children in the class, even those who have a pattern of non-attendance. Over the years, children who have been unable to attend the parties may eventually persuade their parents to allow them to attend, and actually teach their parents a valuable life lesson.
There are two kinds of people in this world, those who get it, and those who don’t. Why waste valuable time on those who don’t?
With the Individualized funding model, the disabled person and/or family become the consumer and are in charge of how money is to be spent. The service providers must then compete. The result is that money stretches farther since there is no bureaucratic “handling cost.” In addition, Individualized Funding (IF) creates a higher quality of services. Unfortunately, government bureaucracies with IF systems often dislike the lack of power they have over parents of children with autism; they meddle and create regulatory barriers that interfere with the free market and, consequently, parents of children with autism are left to choose between mediocre, poor and horrendous service providers. Even superior services end up sliding towards mediocrity because the bureaucracy chases away talent by a) limiting activities of the professionals, b) over-regulating the activities that can be funded, c) paying professionals late or not at all, and d) burying service providers with paperwork. The talented providers are the first to opt out and, subsequently, parents are left with the less capable. Over time, treatment becomes substandard baby-sitting; however, due to the official stamp of government, it continues to garner legitimacy and some parents unfortunately relegate their children to these incompetent government programs.
Governmental systems need oversight since they can be corrupted over time; therefore, in order to protect the rights of the disabled person, the less power that accrues to these systems, the better. By decentralizing money and authority to the disabled person, or in the case of autism, the person’s family, the disabled person is protected. I cannot overstate the importance of the notion that the locus of control must always be in the hands of the consumer, not the provider.
With the now common and serious condition of autism, we can no longer afford organizational inefficiencies that have traditionally plagued this group of children and their families both in terms of cost and the harm of lost treatment opportunities. Therefore, family choice is essential since it has been shown to create efficiencies and improved quality in autism treatment.
If you have a child who appears to be musical, I would suggest that you teach him or her an instrument. The beauty of music is that it can be very reinforcing, repetitive and predictable. Our kids with autism can often outperform their typically developing peers if they have a modicum of talent.
How to teach music? It is simple if you use behavioral techniques. If your child is in an intensive behavioral treatment program, learning the instrument becomes another program. Here are some techniques that I’ve observed (these techniques are all rooted in the literature on ABA, but applied to music). I would suggest that for a child with autism, the easiest instrument with which to begin is piano primarily because it is easy to create a pleasing sound from the instrument. Piano is relatively easy to teach through imitation exercises. In addition, reading music can be taught in much the same way as one would teach a child with autism to learn the alphabet; in this case, the flash cards have notes (and time signatures etc.) on them instead of letters. Discrete trial training and discrimination training are significantly relied upon in the beginning. In addition, backwards chaining is a good way to teach piano pieces, since many children with autism are taught to finish in order to earn the reinforcement. I recently learned that many musicians teach typically developing children using a backward chaining technique as well.
The key to successfully teaching the child is finding a very open-minded piano teacher who is happy to work alongside an ABA therapist. Once the teacher gets over the fact that using abstract analogies does not work as a teaching tool for children with autism, the learning can begin! A flexible piano teacher will soon internalize the behavioral techniques applied to learning piano and the therapist will no longer need to attend lessons. At the beginning, the child may have difficulty following instructions. For example, a talented child with autism may have very firm ideas about how a given piece should end; however, the child will have to learn and accept that one must play the piece as it is written e.g., Bach’s Minuet in G Major must end on G below middle C, rather than an octave above because that’s how Bach wrote the piece! Over time, the structure of music will help the child excel and the ability to play one instrument may often be generalized to other instruments. In addition to personal enjoyment, music also creates a socially acceptable, group leisure activity. From playing an instrument, to playing and modifying music tracks on a computer using an attached piano keyboard, 'MIDI' interface and composition software, the potential for leisure activities is high. In addition, through music the child can participate in structured activities with other children including school bands and orchestras.
I’d like to suggest that working on an innate strength, as well as all the autism related deficits, is a very good idea. Music not only establishes the child’s competence amongst his or her peers, it also can provide much happiness to the child with autism. In the rare case where the child has perfect pitch, this ability may, additionally, have employment potential (in terms of musical transcription). Some thoughts about when to start: make sure the child has mastered simple imitation skills, is somewhat compliant and seems to enjoy music. In addition, some would argue that it is not a good idea to teach the child to read music until the child has mastered reading (decoding) his/her mother tongue.
Good luck on this project, and enjoy the music!
One of the articles that addresses transition to adulthood in a realistic manner is called Transition Undefined. In this section, there is a 2009 report written on the state of services for adults with autism in New York. Although not directly relevant to those of us who live outside New York State, it is nevertheless valuable since many issues are the same regardless of jurisdiction.
Most issues facing adults with autism are not easily solved; Autism after 16 attempts to define and grapple with these challenges.
My first instinct was to uncritically accept this finding because the MIND Institute is reputable, the conference looks legitimate, and because finally it looks like we are starting to understand what causes autism (not one cause, but rather, many different causes at play). Many of us have been dissatisfied with the whole idea that autism is considered one condition. The medical community still looks at autism today much like physicians looked at elevated body temperature in the nineteenth century. Back when physicians did not understand what causes disease, they would say that the person had come down with “Fever.” We now know “Fever” is not an illness, but rather, a symptom caused by all kinds of distinct diseases.
I wanted to see in more detail what the researchers actually found; however, when I scanned the article, to look for the peer-reviewed journal where the finding was published, I realized that my enthusiasm was premature. This finding is only to be presented at a conference put on by the Autism Association of Western Australia and an Australian government funded advisory board. Neither of these organizations are academic, neuro-science organizations. In other words, two non-academic agencies organized this conference.
Once the conference is over, I assume these researchers are going to submit their findings to a peer-reviewed journal. That’s where the real scrutiny will occur. We are going to have to wait for the peers of these neuro-scientific researchers to analyze the findings and put them through the scientific wringer to make sure they hold up under substantial evaluation.
If this finding survives peer-review, then it has the potential to be a game-changer in terms of diagnosis, treatment and eventual cure. We’ll just have to wait and see.
Although these studies are unrelated, they both study the brain to try to find objective ways to identify differences between the brain of a person with autism and the brain of a typically developing person. The first study searches for the cause whereas the second study searches for a more objective way to diagnosis autism (rather than using the traditional behavioral diagnosis).
After all these years, it is heartening to see what looks like real progress in understanding autism and the brain. Let’s hope that these two areas of inquiry eventually result in precise diagnoses and effective bio-chemical treatments.
I’m not overly concerned about big pharma’s marketing techniques; I have no doubt that when an effective drug for autism is developed, they will not need to wine and dine to motivate those physicians to prescribe the magic bullet for their clients. Opportunities to get kids into clinical trials will go viral! Those of us who impatiently wait for the cure, whether from pharmacology or bio-technology, need to cheer on the risk-takers.
Universities may produce fine researchers; however, we can’t rely on university research alone to crack the autism code, since there is only a finite amount of research funding for autism from government and philanthropic sources. We need to tap into the free market in a big way, so that obscene profits can lead to the cure for autism as soon as possible.
The next time someone starts complaining about the “evil” drug companies, remind them that our children’s future is actually in their hands and we want them to become rich beyond their wildest imagination. When pointed in the right direction, greed may not only be good, it may be essential!
The NSR panel actually considers Music Therapy as an emerging treatment (page 64). My analysis of Music Therapy arrives at a very different conclusion -- it’s nonsense. The NSR based their findings on six studies. The only study that met minimally acceptable standards relied on four children. That one study, Kern et al (2006) looked at children during music sessions and found that when teachers used music to mediate an activity, the typically developing kids stuck around longer! Big surprise! Kids hang around longer when it’s fun. For the ASD kids, the teachers created specialized songs for each child to teach social skills. The researchers describe the shortcomings of their own study when they state:
“... a clear limitation imposed by the application of a single-case experimental design is the small number of participants. Another limitation is that no maintenance and generalization measures have been applied. It is not known whether the teachers' and peers' accurate implementation of the interventions would maintain once the intervention (including ongoing collaborative consultation) is no longer in place. Nor do we know if the child's skill acquisition would generalize across settings.”
In other words, they have no idea whether their efforts are going to work once they stop orchestrating the interaction! Based on these thoroughly inadequate results, it is hard to understand how the NSR panel actually deems Music Therapy as an emerging treatment for ASD!
Here’s the main point: music can be extremely repetitive and reinforcing for many children, but it has not been shown to ameliorate the condition of autism. If every repetitive, reinforcing activity is going to be recognized as a treatment, the potential list of contenders can grow without limit or merit, to include:
- Chocolate Therapy
- Movie Therapy
- Bubble Therapy
- Lip Smacker Therapy
- Sticker Therapy
- Guitar Hero Therapy
- Computer Time Therapy
As an aside, I find it hard to believe that out of the approximately twenty behavioral experts (BCBA’s) involved in the report, not one of them raised his/her hand to state the obvious: “Excuse me, but perhaps music is simply reinforcing, rather than therapeutic.”
If caregivers would like to use music as a mainstreaming activity or reward for skill acquisition, that’s fine. Also, music is an excellent way to memorize a sequence. We have been doing this for generations (“now I know my A,B,Cs, won’t you come & sing with me”).
Music may accomplish all these things, but it is certainly not an emerging therapy for autism.
Here is my written review of Staging a Miracle: A Practical Parent’s Guide to Surviving an Autism Diagnosis.
Most western societies understand that someone who is disabled may need some kind of financial support as an adult. In some countries, the disabled are grouped together with welfare recipients and must interact with the bureaucracies that are structured to serve the poor, rather than the disabled. In other countries, the disabled are not lumped together with poor people, but rather, have separate departments to address their particular needs. Either way, the moment a disabled person lands a job, very quickly the amount of government-provided income is decreased, or in the vernacular, “clawed back.” In some jurisdictions, once the person makes more than $500 a month, the claw back begins. How patently absurd is that!
What bureaucrats do not understand is the following:
1) It is much more expensive to be disabled; therefore, due to increased expenses, it is harder to take the risk of securing a job, as compared to the non-disabled welfare recipient. This is the case even if the job may eventually lead to a promising career. The government guaranteed income may be low, but at least it’s guaranteed -- whereas a job is not;
2) For potential entrepreneurs (or the entrepreneurial family of a disabled, talented person), it is against their economic best interests to help set up a business, because most businesses may not make any profit for the first few years. Over the first two years of a new business venture, the disabled person (or his/her family) may be in a net loss position of over $24,000 of foregone, government-provided income.
In addition, there are many well-meaning people in society who would love to offer a disabled person an entry-level job; however, it actually makes more economic sense for that person to volunteer, and keep the guaranteed income! That’s crazy, and needs to be changed.
In the case of autism, the issue is amplified. Although many people with autism may be quite capable of out-performing typically developing workers on a variety of tasks, they may still need some kind of support on the job (which costs money). That said, there is a) dignity to receiving a pay check, and b) value to opening the door to more opportunity with newly created connections from the workplace. So..., what’s a bureaucracy to do? It is simple:
Accommodate the increased expenses that someone disabled must incur by not clawing back any guaranteed income. The more money they make, the more tax they will pay. The incentive should be to make more money, not less!
We live in an amazing age where computers can give disabled people the access to high paying jobs: let’s remove perverse incentives created by government policy so disabled people will have unfettered opportunity to reach their full economic potential!
What Autism Awareness Should be About
Written by: David Celiberti, Ph.D., BCBA, President, Association for Science in Autism Treatment
Autism Awareness Month has come to a close. The blue puzzle pieces will soon disappear from Facebook pages and billboards, the media will focus their attention to other topics of interest, and we will return to business as usual. And business as usual is not OK.
When I first entered the field over twenty years ago, autism was considered a rare condition. When people asked what I did for a living, they often misheard me and thought I worked with "artistic" children. Today, autism is no longer the rare diagnosis that impacts someone else's child. Our extended families, our neighbors, and our co-workers are now all touched by autism. With 1 in 110 children receiving a diagnosis, the sheer number of individuals with autism heightens awareness in and of itself.
For many conditions, awareness is key because awareness promotes detection, and with detection comes a relatively clear path towards treatment. Take, for example, Lyme disease and many forms of cancer. Better prognoses are attached to early detection. Within a few short weeks of detection and diagnosis, patients typically receive science-based treatment. If their conditions are not detected early, then access to such treatments is delayed and their conditions will likely worsen.
In the world of autism, detection is not the "be all and end all." We do not just have a detection issue in autism, but also(and perhaps more importantly) we have an intervention issue. It is my hope that the conversation about autism awareness will be broadened to focus upon the obstacles that separate individuals with autism from effective, science-based intervention and that those that separate their families, caregivers, and teachers from accurate information about autism intervention.
I leave you with 10 ideas about what "autism awareness"should be about.
- "Autism Awareness" should recognize the need to differentiate effective treatments that are scientifically validated from the plethora of "therapies" and "cures" lacking scientific support. Autism treatment has become a multi-million dollar industry with 400+ alleged treatments and thus, science sadly placed on the back burner. This means that heart wrenching testimonials, surveys that are pawned off as scientific research, and outrageous claims abound, making it challenging for parents to determine the best course of action for their child. The aggressive marketing of these "therapies" and "cures" is absolutely overwhelming for parents who are desperate for accurate information to help their children realize their fullest potential. For most other medical conditions, a provider that disregards proven intervention and uses a fringe treatment may actually be sued for malpractice. Such safeguards do not yet exist for autism. Please see our treatment summaries for information about the presence or absence of scientific support for scores of autism treatments at: http://asatonline.org/intervention/autismtreatments.htm
- "Autism Awareness" must recognize the responsibility that we have as a society to make sound choices. I use the term "society" given the myriad stakeholders who make critically important decisions for persons with autism - not just parents, but siblings, teachers, treatment providers, administrators, program coordinators, and tax payers. Decision-making power comes with tremendous responsibility. There are far too many individuals with autism who are not receiving effective treatment, are receiving ineffective treatment, or are subjected to treatments that are, in fact, dangerous. Every minute of ineffective intervention is one less minute spent accessing effective intervention.Every dollar spent on an intervention that does not work depletes resources available for intervention thatdoes work. Please see the questions that appear at the end of this article to promote more careful decision making at http://www.researchautism.org/uploads/roadless.pdf
- "Autism Awareness" must recognize that available information (and information providers) varies greatly in accuracy. As we know, not all information on the Internet is reliable and accurate. Often Internet information is deemed equivalent in relevance, importance, and validity to research published in peer-reviewed scientific journals. In fact, it is not.
- "Autism Awareness" must include careful and responsible reporting by journalists who fully embrace their role as "public educators" and are committed to the dissemination of accurate information. There are dozens of "miracle cures" and "breakthroughs" for autism that receive widespread media attention, even if they have not been proven effective. Unfortunately, treatments actually shown to be effective typically receive the least amount of media attention. It is hard to imagine that things will improve dramatically for the autism community in the absence of more accurate representations of autism treatment in the media. You will find examples of accurate and inaccurate reporting here http://asatonline.org/media_watches. ASAT is also undertaking some proactive steps to enhance accuracy in media reporting.
- "Autism Awareness" should recognize the critical need for newly diagnosed children to access effective treatment as soon as possible. We know that early intervention can make a huge difference. We also know that we have a limited window of time to prepare children for the least restrictive setting once they enter public school. The fact that resources allocated early can save a tremendous amount of resources over an individual’s lifespan does not always enter the conversation when evaluating costs and benefits. That must change.
- "Autism Awareness" should also instill hope for a better tomorrow for those individuals who are not part of the "best outcome" group. With the right treatment, individuals with autism can lead happy and fulfilling lives. Research indicates that interventions such as applied behavior analysis (ABA) can effectively help children and adults with autism realize their fullest potential. The conversation about "cure" often delegitimizes and derails important conversations about how we can help individuals with autism live and work independently, develop meaningful relationships, reduce challenging behaviors that may limit opportunities, access faith communities, and enjoy the array of recreational pursuits that are available within their communities. Those are important conversations to be had.
- "Autism Awareness" must mandate accountability from all treatment providers. Accountability involves a shared commitment to data collection, objectively defined targets, and respect for the scientific method. It is every provider’s responsibility to objectively measure outcomes regardless of their discipline. No one should get a pass on accountability. No one is immune from defining their target and objectively measuring progress. No one should be permitted to boast claims that they cannot demonstrate through data. In fact, one could argue that providers using interventions that lack scientific support have an ethical obligation to share this fact with their consumers and to exercise even greater caution in predicting and measuring outcomes. Far too often, applications of interventions that lack any scientific support are carried out in a manner divorced from any semblance of objective measurement. That should not be tolerated.
- "Autism Awareness" must involve recognition that an abundance of clinical research already exists. Too often, the plethora of peer-reviewed research that could guide and inform treatment efforts is disregarded or ignored altogether. If treatment providers and consumers are interested in published research on diverse topics such as improving conversation skills, promoting academic skills, eliminating pica, or developing tolerance for dental procedures, they can find it. Thousands of researchers have worked hard at publishing their findings in peer reviewed journals and their findings are often overshadowed by a media that practices sensationalism to provide consumers with information about the "next big thing" in autism treatment.
- "Autism Awareness" should help us identify and overcome the barriers that face our families everyday. Not every child with autism is invited to birthday parties. Not every faith community welcomes families of children with autism. Not every school provides meaningful contact between students with autism and their typically developing peers. Not every community provides recreational opportunities for individuals with autism. The absence of these opportunities is both a function of misinformation about autism and lack of awareness about the successful efforts of others who have overcome such barriers. With 1 in 110 children being diagnosed, every facet of society would benefit from evaluating what they are doing, what they are not doing, and what they could be doing differently
- "Autism Awareness" should be about the reality that the hundreds of thousands of children with autism will soon become hundreds of thousands of young adults with autism. We are facing a crisis in the field with a scarcity of services for adults with autism and the absence of a clear strategy for closing the gap between the ever increasing need and an unprepared supply of resources. It was recently brought to our attention that our website and newsletter did not represent lifespan issues. Starting with this issue of Science in Autism Treatment and moving forward, we are committing to broadening our scope so we are part of an important dialogue about adults with autism.
1) Get every pediatrician and family physician to screen for autism at eighteen months of age.
In order to meet the goal of early autism screening for every child, there should be a concerted effort on the part of the autism awareness folks i.e. Autism Speaks, to make sure that a) every medical student who will be either a family physician or pediatrician knows how to use the CHecklist for Autism in Toddlers (CHAT), and b) there is a call out to all family physicians and pediatricians already working in the medical field to take ten minutes out of the well child check up to administer the CHAT. It is hard to believe, however, that even in 2011 members of the pediatric community are against routine screening!!! If the Autism Awareness folks want to make sure that all children in the entire society (and ultimately the world) are screened early, they need to win the hearts and minds of the pediatric community. In other words, the pediatric community is already aware; many of their members just don’t agree...
2) Stop being so politically correct in terms of treatment choices
It is time for the Autism Speaks folk to publicize the fact that:
a) The U.S. Surgeon General has recognized Intensive Behavioral Treatment as best practices for autism treatment since 1999 (that was twelve years ago)!
b) New York State has also recognized Intensive Behavioral Treatment as best practices since 1999 (that was twelve years ago)!
c) Over 50% of states in the U.S. have passed autism mandates forcing insurance companies to pay for treatment!
Once the movers and shakers i.e. the well funded charities, in the autism community recognize the above facts, only then will we be able to move beyond awareness into early intensive behavioral treatment for all the children who desperately need it!
What are we waiting for?
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. It is, once again, time to meet the professionals who are entrusted with your autistic child’s future. Here’s some advice from a tortured, but ultimately victorious, mother who advocated for her child every single day, of every single year (living in a country with no laws protecting the disabled). This writer’s child did, indeed, graduate high school without being tracked, and ultimately received what she required (no thanks to the bureaucrats who obstructed every single, painful step of the way). Here are the eight rules this mother lived by:
1) Know what your child needs
Here’s where you need to do your homework. First, make sure that the privately funded professionals working with your child have a clear idea of a) your child’s needs and b) how the school district can fulfill those needs e.g. a full-time aide with expertise in ABA, or a part-time trained aide purely for recess and lunch. Your professional(s) need to commit this to paper in an Individual Education Plan - IEP, so that even before you approach the school district for the first time, you are ready to respectfully deliver your child’s requirements as prepared by your professional, autism treatment team.
2) Keep a journal
Keep a journal by your phone and in your car. Every time you talk with school officials about your child and his/her needs, write it down. Everything! You need to record every promise and every interaction, noting the time and date. Your child (and your lawyer if necessary) will appreciate this written log tremendously.
3) Know your rights!
If you live in the United States, you have a relatively easier task of securing your child’s educational rights because the federal legislation is quite clear, and there are many advocates available to educate parents. In addition, there are books that can help you get up to speed quickly. If you are not in the United States, make it a point to find out what your child’s rights are and please e-mail me with that information since I would very much like to share the information with international visitors to this blog.
4) Acquire local knowledge
Talk to other parents in your school district to get an impression as to how open or close-minded the school officials are when it comes to accommodating children with autism. In addition, find out what accommodations the school district has provided other parents (but never use that knowledge against those parents)!
5) Never let them see you cry!
Let me repeat that: Never let them see you cry! A popular technique honed by years of practice within the special education field is for the school “experts” to befriend you, and comfort you on how difficult your life must be with a child afflicted with autism (all the while not providing for your child). This technique works particularly well with parents who are prone to becoming emotionally upset, rather than angry, because their child’s needs are not being met.
Remember, your job is not to make friends. They don’t even have to like you: they need to respect the fact that you know your child’s rights, and you will not compromise on what s/he requires. Be careful if they seem too fond of you.
6) Do NOT use untoward language
No matter how angry they make you feel, no matter how disrespectful they are of you, never get into a yelling match, and never use profanity (even though it may feel good at the time). Always keep your cool! One technique of incompetent special educators is to paint the parent as an unreasonable, unstable person. Then these employees can use standard regulations to bar the parent from the school grounds. Remember, everything you say may be used against you in a hearing or court proceeding.
7) Get an advocate
If you are not getting anywhere on your own, it is time to find an advocate to help you get your child’s needs met. The advocate’s involvement may force the principal to put the school system’s commitment in writing in a meaningful way. If you are not successful, even with the help of an advocate, then it is time for the next step!
8) Put your lawyer on speed dial!
Many parents think that they cannot afford a lawyer to protect their child’s rights. I agree that litigation is expensive; however, so is private school for the next twelve years! If your child is very young and the school is not providing what is either medically necessary for your child, in countries with socialized medicine, or a Fair and Appropriate Public Education in the Least Restrictive Environment - FAPE in the United States, think about the damage that can be done to your child... In some cases, a few well placed letters from a lawyer with expertise in autism case law will do the trick; however, you need to be prepared to go “all the way” since bureaucrats are expert at discerning bluff from true intent.
You may be lucky and have a school district that is one step ahead of you, ready and eager to provide your child with an unbelievably great educational experience! I’m sure that there are several school districts that have already learned (sometimes rather begrudgingly) to accommodate children with autism; however, in case your school district is still operating based on a 1950s model, be prepared to blaze the trail. Your child’s future depends upon it!
The organization, Medicare for Autism Now has just released its third trailer for the film Medicare’s Orphans. Although regular readers of this blog have probably checked out previous trailers for the film, for those who are now to this project, it is worthwhile seeing the earlier trailers (Trailer 1 & Trailer 2). Although this may be a difficult film to watch, it is crucial that parents of children with autism understand what happens when a person with autism does not receive treatment. In the last 10 years the trend has been to candy-coat autism; therefore, it is rare to see the ugly reality of autism (which has traditionally not been Asperger’s syndrome or “high functioning” autism).
Although this film is about the struggle of Canadian families to access treatment for their children, it is relevant for all of us. Those who live in other parliamentary democracies will see incredible parallels to this Canadian true story. The film is scheduled for release in October.
For everyone who thinks that Canada is a great place for children with disabilities, this will shake you to your core!
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. The genesis of the lack of trust is beyond the scope of this post, but suffice it to say that this issue has serious, potentially deadly, implications.
Governments, pharmaceutical companies and the medical community can wring their hands, create additional prestigious panels to do yet more meta-analyses and revisit the various studies done on autism and vaccines: that is not going to put the vaccine-autism issue to bed. No amount of cajoling or ridiculing parents of babies and toddlers is going to achieve this goal, either. Once the trust of a large swath of society has been lost, it is time to change course.
The relationship between vaccines and autism desperately needs to be resolved; however, until parents of children with autism are convinced that there is no relationship between vaccines and autism, the vaccination rate will decrease and preventable childhood diseases will increase. What a completely avoidable tragedy.
So..., now what? Well, it’s very simple. Instead of arguing about past studies that parents don’t trust, let’s address each and every parental concern, respectfully, head on in a new study. Here are the issues as I understand them.
Three Theories Suggested by Anti-Vaccine - Autism Advocates
There are three theories discussed in the community of parents regarding a causal link between vaccines and autism:
1) DPT – the claim is that the mercury in the DPT vaccine causes autism.
2) MMR - the claim is that the Measles part of the MMR vaccine causes autism.
3) Vaccine Assault - the claim is that too many vaccines are given at the same time. They purportedly overwhelm the body and cause autism.
The DPT problem has been resolved because the mercury (the thimerosal) that was used as a preservative in the vaccine has been removed; therefore, the alleged variable theorized to be the culprit in the DPT vaccine no longer poses a potential threat. The MMR autism vaccine theory suggests that the measles component of the vaccine assaults the immune system. This theory has the broadest support amongst parents (due to the Wakefield study, first published in the prestigious “Lancet” journal and then retracted). This is the main theory that needs to be tested. The outcome of the proposed MMR study would help determine whether a Vaccine Assault Theory test is necessary. More parents support the MMR Vaccine Damage Theory than the Vaccine Assault Theory; therefore, if the MMR was truly disproven as a potential culprit, more parents would vaccinate their children.
New Study Design
The new study must be designed as a true experiment and not a retrospective analysis. I won’t bore readers with the design (but click here if you are interested in a suggested study design).
Science & Politics
It is crucial for the scientific community to understand that this group of children has been poorly treated throughout the entire history of this condition by academics in a number of fields (i.e. medicine, psychiatry, special education). Consequently, only the most demonstrably impartial study will ever be trusted by the community of parents; therefore, in order for parents to have complete confidence in the results, researchers with any relationship to 1) government health policy and/or epidemiology (whether in a university or government setting), or 2) pharmaceutical companies, should be completely excluded from the research.
Due to the serious public health ramifications of vaccine non-use, academic researchers are often funded by government departments, rather than “arms length” funding sources. This study must be different. In addition, no researchers from countries with nationalized i.e. government run, health care systems should have a role in this research (that includes British, Danish & Canadian researchers) due to the obvious conflict of interest. In short, the scientists who are chosen to conduct this research must be 100% disinterested in its results; otherwise, the vaccine-autism controversy will continue unabated, and a generation of children with be at higher risk for a variety of preventable childhood diseases.
There will always be a small number of people who are anti-vaccine, despite the science; however, in this case there are thousands of concerned parents who are not ideologically anti-vaccine. These parents need to be presented with uncompromised data collected far away from researchers who are financially or ideologically compromised. Only then will the tremendous public health benefits of vaccines be secured for future generations. It is up to the scientific community to make this right.
They need to get started post haste!
Lawyers seem to be the latest target for lawmakers, and it is certainly easy to get in line and demonize this profession; however, let’s reflect for a moment, as parents of children with autism, and ponder whether it is wise to attack lawyers. Just yesterday, I opened my e-mail and found the latest battle being waged in the courts, this time in Hawaii.
In this case, the Department of Education is being sued because the Hawaii public school system allegedly denied two little girls an appropriate education. This case has taken many years to get to the appropriate judge (and I’m sure the parents are exhausted); however, it is only through the use of lawyers, that the rights of children with autism can be protected; otherwise, the laws would simply gather dust at the law library, and the bureaucracy would continue to do what it does best, resist change. So the next time you meet a lawyer involved in civil litigation, give a hardy thank you, and buy the litigator a latte!
It is worth noting that a good SLP is priceless, and a bad SLP will steal your child’s precious time, and empty your bank account. So, caveat emptor! In addition, many parents are not informed that when a very young child enters a high quality, Intensive Behavioral Treatment (IBT) program, the speech and language aspects of the program have already been incorporated into the treatment protocol. Once the child has progressed to the point where the IBT program has not adequately remediated the speech and/or language difficulties, then it is time to search for a competent SLP. A good behavioral consultant will often recommend an effective SLP who becomes an important part of the team. If that happens, chances are the parent will be in good hands; however, if this does not occur, it’s time to be a savvy consumer:
Here are my 10 questions to ask a prospective SLP, and the answers you should be looking for (I’m putting on my Beekeeper’s suit since I’m shaking an SLP hornet’s nest here):
1. What techniques do you use for autism spectrum disorder in your practice today?
Answer: Although I’ve learned a variety of philosophies, for autism I rely on a highly behavioral approach since that works best.
2. Do you use a child-lead philosophy or is your approach more adult-lead?
Answer: For autism, my approach is much more adult-lead than most SLPs because the learning is more efficient that way.
3. What is your opinion on the Hanen method?
Answer: I’m very familiar with the Hanen Method, but I do NOT use it for children with autism (and I don’t think that there is enough data supporting that method to use it with this population of children).
4. Are you going to send me to a course to teach me to use the “It Takes Two to Talk” manual?
Answer: The burden of therapy with your child will not be placed on you, particularly since this manual has insufficient science behind it to justify its use.
5. What do you think of the SCERTS method?
Answer: I’m also familiar with the SCERTS Model, and I am unimpressed with the data to this point.
6. What about “The Learning to Speak” program?
Answer: “The Learning to Speak” program with the twelve minutes a day “parent as therapist” model has insufficient science behind it to justify using it with your child.
7. Do you create speech and language exercises for others in my child’s life to do outside of one-on-one therapy with you?
Answer: I am committed to provide exercises the therapists can do with your child in their treatment sessions (as long as they take data to make sure that they are adequately executing my written instructions). I would also like to do training with them as the need arises.
8. How do you generalize the activities my child has done in your sessions to his/her world outside of the therapy room?
Answer: Generalization of skills is my ultimate goal! I will be instructing you on how to incorporate language when you are with your child (and the therapists have gone home). I am not suggesting that you have therapy sessions with your child; however, every skill your child masters must be generalized to you as well. In other words, I want mastered linguistic skills incorporated into your child’s life; otherwise, what is this entire exercise for?
9. How much of my child’s time should be spent concentrating on speech and language outside of sessions with you?
Answer: I would like to see skills introduced by me, practiced every day with your child by your treatment team, and then generalized through every communicative interaction in your child’s life.
10. Do you use behavioral techniques in your work?
Answer: I use behavioral techniques heavily, relying on highly motivating rewards in my sessions with your child. In addition, I will set up rewards for your child to earn when with others at home, at school and in the community.
If the SLP is enamored by the Hanen Method, the SCERTS Model, or any child-lead model or philosophy when it comes to autism, run the other way... You will save your child’s precious time, and as a side benefit, you will not have to undergo excruciating pain of watching high-price inefficiency at work.*
*Despite the number of SLPs with Ph.D.’s behind their names and the number of university clinics offering this method, peer-reviewed data studying children with autism on the Hanen Method, SCERTS model and the “Learning to Speak” program are either weak or non-existent.
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… The foundation is called Surfers Healing and it is supported by very well meaning professional surfers, and corporate sponsors, who just want to make a difference in the lives of children with autism. Unfortunately, instead of calling this activity what it is, which is "fun", they have to use the therapy word and make the following claims in the local media: "Some of them will smile for the first time, some of them will talk for the first time, some will make eye contact...and somehow it just changes them..."
Clearly being taken out on a surf board, or learning to surf, is very reinforcing, and a form of exercise, which is great!; however, can't they just drop the term "healing" and rename it Surfing Dudes for Kids with Autism? If they would not make outlandish, anecdotal treatment claims, they could advertise their camp as a great experience for children with autism. I, for one, would wholeheartedly support this camp as an obscene amount of fun or an enriching experience. What a great way for children with autism to be part of beach culture! But healing, therapy, treatment... c’mon... Don’t expropriate the language of treatment, and don’t confuse the insurance providers.
Parents of children with autism often find themselves groaning under the financial burden of the cost of autism treatments. It was not uncommon for parents to borrow from their mortgages when times were good to pay for autism treatment, to the point where now they are “under water”, owing more on their mortgage than the house is worth.
In a recent Google Autism Alerts, there was an article about a form of autism treatment that treats children with autism as if they have been literally deep under water, directing that they undergo oxygenation treatment in a hyperbaric oxygen chamber, in much the same way as scuba divers who surface too quickly are treated for decompression sickness (the “bends”). This controversial treatment for autism is called Hyperbaric Oxygen Therapy (HOT) and it is done using similar equipment.
In 2008, I did a comprehensive search of all the academic data bases looking for new therapies, and HOT did not surface as a treatment (even though it could be found on several websites). In 2011, I did another comprehensive search and found that HOT was gaining a seemingly significant following on the Internet fueled by the media looking for the next miracle cure. In addition, there had been a peer-reviewed academic article published.
Taking an open-minded, but scientifically skeptical approach, what do the data have to offer? Even though autism has not traditionally been conceptualized as a disorder related to oxygen deprivation in the blood, perhaps researchers missed this possibility; it could happen. The HOT people have a theory (that I needn’t belabor) about how oxygen deprivation is implicated in autism. Theories are great; but where’s the data?
Where are the peer-reviewed journal studies providing evidence that this treatment improves the condition of autism? I challenge the inquisitive to google “autism and hyperbaric oxygen therapy”. Delivered up will be a treasure trove of testimonials, you-tube videos, and mainstream reporters waxing poetic about Hyperbaric Oxygen Therapy. It’s such a warm and fuzzy feeling to have a treatment that doesn’t take a huge amount of work, and can help the little kiddies...
What about the nagging issue of data? I know, I know... it’s boring. Don’t blog about data! Everyone will click away! Sorry, folks, I’ve got no choice.
The data: when one actually looks at the latest study with the best controls, children with autism show no improvement. No big surprise there; however, it is always worthwhile pursuing impartial evaluation of any purported autism treatment. This brings me back to my three key criteria for evaluating any autism treatment method: Show me the data. Show me the data. Show me the data.
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!
When a child is first diagnosed, often parents have already felt their world shrink because a toddler with autism may be too unruly to go into a children’s library or family restaurant. I remember my child singing at the top of her lungs in a post office. It was so loud that a kind stranger offered to pick up my parcel while I waited outside! In addition, because of her beautiful singing (and it was beautiful), we did not enter a family restaurant for the first two years of her life (we eventually found a Chili’s restaurant that cranked up the music so loudly that we couldn’t hear ourselves think -- but, back then, that was a good thing)!
The child with autism starts shaping the behavior of the family and, before you know it, that child is left behind on family outings. As early as age two, tracking into special pre-schools or segregated treatment programs has begun (I’m referring here to programs that do not have reintegration as their goal). Many parents are encourage to give up quickly, and accept the reality that their child’s behaviors will not be under control enough to participate in simple pleasures unless they “re-engineer” the environment for them e.g. turning the music off at a public carousel so the child can enjoy the experience. The pressure to segregate and accept socially problematic behaviors as part of autism comes at the parent from all sides (the Positive Behavior Support (PBS) folks are particularly guilty of this).
There is a way out, though! Practitioners using Intensive Behavior Treatment (IBT) target these various behaviors and generally eliminate them, or modify them to be acceptable. For example, to control the singing, my child was taught to write down the lyrics to her songs, and then eventually write out the song using musical notation. This behavior took the place of singing. Eventually, she was able to listen to an ipod so she just looked like a surly teenage who was bored with the family conversation. That allowed us to go to restaurants peacefully (and not bother people in the next booth)!
When the child matures, most self-stimulatory behaviors have either been eliminated, modified to be socially acceptable in public, or taught to be acceptable based on time and place e.g. at home, in the bedroom or bathroom. It is much easier to do the behavioral “heaving lifting” when the child is young, although I’ve seen many behaviors successfully modified in adults. A skilled practitioner will understand the importance of shaping certain behaviors to be acceptable, and will enlighten the parents as to why a seemingly cute behavior in a two year old will not be cute in a twelve year old, or twenty-two year old.
There are behaviors in a subset of children with autism that do not seem to be self-stimulatory in nature, but rather, seem to be obsessive, compulsive. For these children, controlling behavior is somewhat more difficult. The practitioners use the same techniques to eliminate or control behavior; however, these children seem to need more behavior management throughout their lives; the reality is that the child’s behavior depends heavily upon the skills of those in the child’s life. In short, the better the parent or caregiver is at mastering behavioral techniques, the more expansive a world that child, and eventual adult, will experience.
Unfortunately, we live in a norm-based society where social rules are, for the most part, followed. When a child with autism grows into adulthood, the intolerance for breaching social convention crescendos, often with horrific results for the person with autism. Therefore, it is very important to eliminate anti-social behaviors in a child that will become entrenched and have negative implications in adulthood, ultimately shrinking their world.
Let’s make sure that for people with autism, it’s not a small world after all...
Staging a Miracle: A Practical Parent’s Guide To Surviving an Autism Diagnosis, by Jason Eden, is a hard-hitting book I came across quite by accident. It has been many years since my child was diagnosed with autism so I don’t generally read books on this topic; however, part of the title “surviving an autism diagnosis” piqued my interest. The author, Jason Eden, writes in a blunt, brutally honest tone which is clearly designed to save the parent of a newly diagnosed child time, since, as we all know, the clock for early intensive behavioral treatment starts ticking upon diagnosis. Eden dishes out “tough love” to the new parent, but then he shows his true colors when he says: “This will not be an easy journey, but that was guaranteed from the moment you first suspected there might be something different about your child. Let’s walk through this together, and let me help you set the stage for your own personal miracle”. Here’s a dad, laying it bare for all the world to see, in order to help his brethren, other parents of children with autism. The reader will appreciate Eden’s candor.
Eden makes a valiant effort at protecting the new parent’s bank account by attacking some of the more established snake-oil cures for autism as he recommends the most science-based approach, Applied Behavior Analysis (ABA). He then describes in some detail the steps he took to provide a program for his child. Eden was fortunate that there was an agency in town that enabled his family to learn quickly. Although not everyone will agree with every decision Eden made in terms of treatment, for the most part, he offers very sound advice. I particularly enjoyed his experience with people in the child’s life who refused to buy into behavioral therapy but rather, attempted to “spoil” the child and thereby, undermine the progress. Most of us have travelled down that road before...
The author also includes a chapter on how to prepare advocacy for your child and actually discusses his various techniques in detail! This chapter is very valuable because, so often, parents of children with autism do not understand that it is not their requirements that are unreasonable, and it is not their child who is creating the problem; rather, it is the system that does not adequately accommodate the child. In other words, the parent of a child with autism is not unreasonable despite the picture often painted by the “professionals” in the educational system.
Eden takes us through his thought process when shopping for school districts. He calls this section, “Fighting When It’s Not Necessary or Helpful”. Sometimes, indeed, it is good to know when not to fight…
Another important chapter discusses housing, and how to make sure that you are not discriminated against when renting a home (in his case, he changed school districts to be in a more autism friendly district). This is a valuable discussion to have since many parents are so concerned with the more pressing, immediate issues that they may not even realize that they are unwittingly sabotaging themselves and adding to the difficulty of finding appropriate housing.
From the shock of diagnosis, the search for treatment, the logistics of setting up and administering a treatment program, to the advocacy responsibilities, if you are a parent at the very beginning of the process, think about this book as a shield of armor to protect you against whatever may come your way.
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, it is crucially important to understand that as science moves forward, the psychiatric Diagnostic Statistical Manual (DSM) changes over time. These changes have both positive and negative ramifications for everyone in the autism community including parents of children on the autism spectrum.
Take the latest debate regarding the proposed revision of the diagnostic manual that would create the DSM-V (thereby replacing the DSM-IV). The psychiatric establishment want to eliminate the diagnosis of Asperger’s syndrome and cluster all children afflicted with an autism spectrum disorder together. They would all receive the same diagnosis: autism. This suggestion is being offered for two reasons, one clinical and one political:
1) The Clinical Justification
Most diagnosticians can’t discern the difference between Asperger’s syndrome and autism in some clients (particularly when they reach adulthood); therefore, the only way they differentiate between the two is by looking at their history of language development. Those clients who did have a language delay would be diagnosed as having high functioning autism. Those clients who did not have a language delay would receive a diagnosis of Asperger’s syndrome. To many diagnosticians, the history issue is problematic. I quite agree.
2) The Politics
Many young children with Asperger’s syndrome will be unable to access treatment for their condition (treatment that will make a huge difference in their lives) because both private and public health insurance companies, and the educational system often attempt to deny children with Asperger’s syndrome the treatment and education they require. When a young child is diagnosed with autism, that is considered a “safer” diagnosis because, theoretically, it should be easier to access treatment (I use the word “theoretically” since in some parts of the world, treatment is not even recognized as something that exists!).
It would be very unwise to remove the diagnosis of Asperger’s syndrome from the DSM since the diagnosis of autism and Asperger’s syndrome are quite different (even though they do share some symptoms). Here’s my solution (and I doubt it will be popular with many clinicians because it fundamentally changes the way we look at Autism Spectrum Disorders):
1) Stop thinking of autism as a static disorder
Once an autism diagnosis was a very stable diagnosis. In other words, it did not change over time. However, with intensive behavioral treatment (IBT), science has provided us with strong evidence that these outcomes do change. A child with autism who has done very well in an IBT program may have suffered from a severe language impairment; however, as an adult, that person is very verbal and looks to everyone like they have Asperger’s syndrome. Instead of looking at history to condemn them to a diagnosis of autism, why don’t we simply diagnosis them as they are today? In the best case scenario, they may not even meet the criteria of Asperger’s syndrome.
2) Keep Asperger’s syndrome on the Autism Spectrum as it is in the DSM-IV
It is crucially important for children with Asperger’s syndrome to access IBT (customized to their functioning level). After they complete treatment, then these children need to be re-diagnosed when they reach adulthood. If they have progressed considerably well in treatment and no longer meet enough criteria for Asperger’s syndrome (which is still on the autism spectrum), it is time to rejoice!
3) Do not disturb those who may have an Asperger’s shadow syndrome
It is time to stop stigmatizing people who are somewhat quirkly, but very functional, and happy in their lives with the diagnosis of Asperger’s syndrome. Our world is large enough to accommodate people who are eccentric without trying to “help” them by manufacturing pathology.
In short, why don’t we embrace the culture of success instead of the calcification of heartache?
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).
Based on this new study in Pediatrics, a couple needs to ask each other: Do we feel lucky? According to these researchers, your odds are not good! In my original blog, I made it clear that the study’s findings have not been replicated; however, these results are so scary that I can imagine parents not wanting to take the plunge, yet they may not have the time to wait for a replication. If researchers find that these results are severely flawed, then they may have mislead 1000’s of parents who choose not to increase their family size based on bad data (which brings me back to my mantra: bad data is worse than no data!). On the other hand, if this study is accurate, it is a sad day for every family with autism...
Now that the study is actually out, we are better able to evaluate the study design. One very good aspect of this study is that they followed the siblings of children with autism from eight months of age, to three years of age and then diagnosed the children. At three years of age, an autism diagnosis is quite reliable. These researchers found that of the 664 siblings, 54 were diagnosed with autism (which is an 8% recurrence). When they combine an autism diagnosis with a diagnosis of pervasive developmental disorder not otherwise specified (PDD-NOS), that’s how they come up with the much higher number of approximately 19% (and here I’m referring only to families with one child on the spectrum). Here’s the lead researcher discussing her study:
Here are the questions I have for the researchers (I couldn’t source the answers in the original article):
1) How can the researchers guarantee that the families in their study were representative of families of children with autism in general? How did they correct for volunteer bias? Remember, if they are making generalizations to the entire population of families with children with autism, the sample must be 100% representative of that population.
2) The study claims to have excluded those children with other neurologic or genetic conditions such as fragile X syndrome. Did they do the genetic testing required on each and every one of them to make sure that fragile X was not skewing their results upward?
3) Was the study sample of autistic children representative of the spectrum, or did these children have autism, as opposed to Asperger’s syndrome? If children with Asperger’s syndrome, and PDD-NOS were excluded or under-represented, this would also skew their results.
I can’t wait for the debate about these results to begin in the next issue of Pediatrics.
Until then, we are all going to have to hold our breath!
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? Is it in our DNA to provide hope for another’s challenge or misfortune? Perhaps, but it is not helpful. In fact, it is very misleading... I’m referring to the recent articles Amazing Individuals With Autism Provide Hope and the Top 10 People With Autism Known Today list. I was going to ignore the list, but it keeps on propagating through the Internet, inadvertently preying on the hopes of parents of children with autism, so I am compelled to weigh in...
There are two burning issues that must be addressed:
1) Although Asperger’s Syndrome is technically on the ASD spectrum, we really must separate the two; otherwise, the world will continue to conflate autism with Asperger’s Syndrome and the lies will continue. Repeat after me: Autism and Asperger’s Syndrome are different (Journalists: Please repeat that 10 times!!!). The vast majority of these top ten “autistic” people today are highly eloquent: ergo, they do NOT have autism. *
2) Two on the “top 10” list are amazingly talented: one is a jazz prodigy, & the other is a mathematician. Most of the other people are also exceptional in their abilities. I take nothing away from these interesting people; however, their exceptionalism must be attributed to them, and not to autism (or Asperger’s Syndrome). In fact, the entire concept of savantism is very misleading. Allow me to explain how “savantism” occurs in people with Autism Spectrum Disorder (and I am happy to debate any leading “savant” expert on the planet in regards to this issue)!
First, a person must have talent. In the same way as a typically developing person is a talented musician, the person with ASD must have talent. Next, the person on the ASD spectrum must be very focused and practice for hours on end. A typically developing person may practice very hard; however, that person most likely has a life that is much less focussed and, therefore, finds it very difficult to put in the hours necessary to become truly exceptional. Some musicians do put in the hours and find that: talent + hard work = success. Just ask musicians who are at the top of their game to estimate the number of hours they practiced.
Now let’s talk about the talented individuals with autism. They are very focussed as well. Sometimes these people spend every waking hour practicing their talent. We call this practicing behavior “perseveration” or “obsessive” because the person has an ASD. We call the same behavior “hard work” when the person does not! It is correct that many people with autism engage in perseverative behavior, or suffer as well from obsessive compulsive tendencies or a disorder. However, in order to exploit that talent, practicing is a prerequisite.
Approximately 20 years ago, I viewed a film created by a so-called world famous “savant expert” who showed a man engaging in a behavior called “calendaring” whereby he could tell you the day of the week if you gave him any date, even a century ago. For example, if you said August 5, 1853, he would say, that’s a Tuesday. Then the “savant expert” asked him: “what is 2 + 2”? He couldn’t answer “4”. She then proceeded to explain that he was an “idiot” savant (I know, I know, but that’s what they called them). She explained that these idiot savants have islands of brilliance, but are otherwise intellectually impaired (I won’t use the actual term due to its hurtful nature). What she did not understand is that he had figured out a very complex, three dimensional, mathematical system to answer these questions; however, due to his age, and the state of the science at the time, he had never been given the opportunity to learn basic language, never mind what 2 + 2 means! So... I have one question: Who’s was the idiot!
Although the state of the science in autism treatment has advanced considerably, this concept of “savant” lives on, and experts make their livings studying these savants because it is so dog-gone fascinating. Unfortunately, by minimizing the talent of the person due to a diagnosis of autism or Asperger’s Syndrome, we actually do them a serious disservice, and build up false hope for the parent of a newly diagnosed child! In addition, we stigmatize the person on the ASD spectrum because generally their talent is explained away as a “parlor trick” instead of a talent that could actually make them a living!!!
A word of advice to new parents from a parent who has already walked down this road: If your child is one of the 10% of children with autism that has a clearly identifiable talent, work on their skills in this area. Their abilities may become useful for 1) mainstreaming in the educational system and 2) placing them in the job market.
* Note: If a person is on the Autism Spectrum, afflicted with Asperger’s syndrome, that in no way means they should be denied access to treatment to improve their condition (as some insurance companies have attempted to do). In fact, individualized treatment for those with Asperger’s syndrome is crucial to their future independence and social competence. This is a very important topic, but for another day...
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. A fearless Canadian autism advocate, (a mother of a child with autism), sent me an article from another mother in New Zealand who has been fighting for her child’s rights to services. The names of the countries change, but the tired, unimaginative justifications for denying children with autism services remain identical.
The article, Unfriendly Consequences: What Competition for Limited Resources Does to the Autism Community and Autism Families describes how the system pits parents against each other. Instead of parents fighting together, the bureaucrats find a way to “divide and conquer”.
The United States
Parents in the United States were first out-of-the-gate to secure treatment for their children, and although there are still many children not receiving what they need, the laws exist and have been tested successfully. For parents in the U.S. who need to advocate for their children, there is an organization called Wrightslaw that has considerable resources, including a list of thirteen ABA/Lovaas judgments with the cases linked. If you are an American starting the advocacy process, I highly recommend this website. In addition, children with autism are protected by three Federal Acts:
~ Section 504 and ADA
There are also 26 states that have passed state mental health parity acts (MHPA) which have important implications for the coverage of autism treatment by health insurance companies. Check to see whether your state has passed a MHPA yet.
If you are in a country with a parliament democracy, unfortunately, your battle is far from over. I am most familiar with advocacy in Canada (although I’m aware of some in the United Kingdom). In Canada, the courts were ultimately used to attempt to change the lives of children with autism for the better (with mixed results); however, unlike in the U.S., in Canada the laws were not changed.
It is crucially important for parents who live in countries where the system has not yet evolved, to join ABA groups such as the ME-List on Facebook, since parents from around the world connected through the internet will be able to share their successes and failures. Advocate parents from other parliamentary democracies have much to learn from each other’s experiences. The U.S. legal precedents can also be helpful as a guide; therefore, it is worthwhile using them. From personal experience, I can tell you these precedents were morally persuasive (even though they had no legal weight).
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!
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, it was published in a peer-reviewed journal. But now, we need to wait. Yes, we need to wait for a replication...
Here are my concerns with this study:
1) Who diagnosed these children, and were the diagnosticians all qualified? They used 664 children across the U.S. and Canada. That is not a well-controlled group of diagnosticians (and it is not sufficient that they may all be licensed psychologists).
2) When we talk about autism, are we talking about Autism Spectrum Disorder? If so, what percentage of the children have autism, Asperger’s Syndrome, and/or possible shadow syndromes that would never have been picked up even a decade ago?
If you make an Autism Spectrum Disorder diagnosis so broad that every person who may be somewhat socially immature, awkward or introverted suddenly is diagnosed on the spectrum, then you dilute the currency of an autism diagnosis, and it becomes meaningless...
The way science works is that this finding MUST be replicated using a new data base, independent from these researchers. In other words, researchers need to find this same result using a completely different group of children. Then the research needs to be published in a peer-reviewed journal. Only then, should these findings be accepted. That’s the way science works, folks... These researchers must have their findings replicated!!!
If, indeed, the finding is correct, and that is conjecture at this point, this is very powerful for the autism lobby because autism will no longer be ignored or explained away. Everybody will be touched. In other words, autism will be coming to a neighborhood near you. The upside to this proliferation of children diagnosed with autism is that there will be more attention given by those in positions of power, and we will edge closer and closer to a cure. Of course, the tragedy for families with another autism diagnosis cannot be minimized, and my heart goes out to every parent with even one child on the spectrum, never mind two...
We need to be diligent, though, since science used in the name of politics will hurt us in the end since bad data is worse than no data. In short, we must guard the scientific process at all costs.
I eagerly await a replication!
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 or those who were “intellectually challenged” (back then the term was not as enlightened). It became instantly apparent that the knowledge base and supports for those with special needs were not a good fit when it came to children with autism.
Well..., today I awoke to “groundhog day the movie”... Only now we’re talking about transition from high school to work and we are getting the same tired advice from the same generic books ... as regurgitated in new articles and blogs.
Today’s article refers to the IDEA (Individuals with Disabilities Education Act) stipulation that a transition plan needs to be in place by age 14 in order to successfully transition students with autism, “potentially”, into a work situation. There is lots of talk about how a comprehensive vocational assessment must be conducted, etc... Then we’re supposed to rely upon the school district’s transition services and we’re told that the parent needs to be an integral part of the transition team.
PROCESS, PROCESS, PROCESS... but what about OUTCOME?????
In order for me to have any respect whatsoever regarding these experts who love process, but don’t actually want to be held accountable for outcome, I need these questions answered:
1) What percentage of your students with autism have transitioned into paying jobs in total?
2) What percentage of the students with paying jobs graduated from the regular education system?
3) What percentage of the students with paying jobs graduated from the special education system?
SHOW ME YOUR DATA!
I doubt very much that 1) anyone is taking this data, and 2) if they are, the percentages are abysmal. I would very much like to be wrong about this; however, until someone can provide me evidence to the contrary, why don’t we just admit it:
The truth is that we are making it up as we go along and that people with autism who graduate from the school system are, by and large, not successfully integrated into the job market! Why, you may ask, am I so critical about people trying to help. They’re just doing the best they can. Yes, that’s true, but they need to be honest! The first step to solving a problem, is recognizing that the problem exists.
PROBLEM: WE HAVE NO SYSTEMATIC WAY TO EMPLOY PEOPLE WITH AUTISM WHEN THEY GRADUATE.
SOLUTION: PARENTS & EXPERTS, LET’S GET CREATIVE!
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...
I read with great dismay the latest article, What to do about autism, which describes the topic of a five day teaching institute as follows:
“But research indicates there are ways of handling the behaviors of autistic children — namely Positive Behavior Support and Applied Behavior Analysis — that, over time, can improve the quality of life for both child and family...”
One of the keynote topics, in this Faculty of Special Education sponsored seminar, is: “Effective Teaching Strategies, PBS, and Ethical Behavior Interventions”. If you are new to the world of autism treatments, this may not seem out of the ordinary; however, you need to know that “Positive Behavior Support” is philosophy, not science; moreover, I would argue that PBS is actually dangerous for children with autism and personally made sure that no well-meaning, but completely ignorant “special educator” practicing PBS got closer than a mile away from my child when she was in the school system. There is a great chapter in Controversial Therapies for Developmental Disabilities where the authors go into detail about this form of pseudo-science. In addition, I also devote some time to this unfortunate metastasizing cancer of a therapy in my latest book.
Let’s boil down the issue to its rancid essence: PBS is all about changing the world, or in their jargon-speak “re-engineering the environment” to make it easier for people with special needs to be included. If they re-engineer an environment successfully, then PBS works... I’m sure that every legitimate autism researcher would love to be able to take this kind of data (on the adult’s ability to interior decorate, not the child’s ability to learn from, and adapt to, their environment)!!! Of course, this begs the question: who is the therapy for... the typically developing adults, or the special needs person? If researchers want to take data on typically developing adults, they should go ahead; but don’t call it therapy, and don’t waste our children’s time when providing them access to bona fide Applied Behavior Analytic (ABA) professionals could be changing their life trajectory in a truly meaningful way.
What motivated me to write about this today, though, is the fact that they are putting Applied Behavior Analysis (ABA), and Positive Behavior Support (PBS) in the same category and, thereby, attempting to take the legitimacy of 40 years of research from ABA and “borrow” it to conflate the two approaches (which have very different outcomes)!
So..., my bottom line for new parents is BEWARE OF POSITIVE BEHAVIOR SUPPORT. Chances are that it’s coming to a neighborhood school near you!
I read 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? Yes, with autism you can. Unlike other disorders, parents of children with autism are eternally vigilant. So..., the safety concern and monitoring is chronic, but when the child climbs out a window to take a walk around the neighborhood, that is a crisis. Ergo, autism is a chronic crisis.
Although most parents understand how to monitor their child with autism, the school system often fails in this regard. I’ve lost count of the number of times a child with autism goes “missing” from the school yard. That’s bureaucratic speak for (and please allow me to translate): we weren’t monitoring your child closely enough due to budget cuts, and we’ve kept you out of the loop this entire time because what you don’t know, can’t hurt us...
One of the ironic twists regarding autism and safety is that the more successful the child is in school, the more the child is mainstreamed. Increased mainstreaming puts the child at increased risk; however, school districts generally reject this notion and peg the parent as being “over protective” instead of understanding that the ability to receive an A in 10th Grade Math has no relation to whether the child can cross the street without being hit by a car. It’s crucial to train Emergency Medical Services about autism; however, we parents cannot rely solely on the goodness of others when it comes to protecting our children.
We need to set up systems whereby our children’s safety is guaranteed. Simple examples include: 1) alarming our homes so that every time a window is opened, we hear it through the gentle beeping of the alarm system, 2) requiring fences around the school yard (which would protect the typically developing children from malfeasance as well), 3) providing a Wherify watch (with monitoring) to attach to the clothing, belt or wrist of the child with autism, and 4) teaching the child to swim (which can be done by professionals with the right expertise).
Children with autism can be taught an amazing amount of information; however, the difference between those children with autism who grow up to be quirky, but independent adults, and those who are dependent and need to live under the supervision of others boils down to one word: SAFETY.
Note: For any readers who do not know about IBS, it is Irritable Bowel Syndrome, a condition which is caused, most often, by unrelenting stress and seems to be common among parents of children with autism.
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 which generally precedes the use of the internet; however, the CORRELATION is clear. The internet is a great tool for most people suffering from Autism Spectrum Disorder and, yes, many people with autism are on the internet for hours on end. The following question needs to be asked: Why is this a problem? Why is it not fantastic that people with autism now have more access than ever to follow their passions (as eccentric as they may be -- do I hear “lip smackers” anyone). If people on the spectrum are good at using the internet, or can be taught to use the internet, think about how large their world may become! Not only do they gain access to hobbies (a form of socially sanctioned, self-stimulatory behavior) but, also, some of the more technically competent people on the spectrum may gain access to employment!
Yes..., EMPLOYMENT. There are many paid jobs that can be done today from the comfort of one’s desk. All one has to do to unleash the power of the internet, is visit freelance sites such as Elance and see the potential of the internet. Obviously, people with autism who use these sites may need differing degrees of help; however, the jobs are there for the bidding. I’m particularly saddened when I see unemployed people with Asperger’s Syndrome who have amazing computer programming skills. In short, one solution to the chronic underemployment of capable people on the autism spectrum, is the internet!
In addition, there are many who do not suffer from autism but may have tendencies. These folks have been wildly successful. What’s wrong with that? If you have a loved-one with autism who has marketable skills, check out my favorite freelance site:
You never know where this can go, if you don’t try... It is possible that a family member may need to help when it comes to bidding on a job; however, once the job has been awarded, if the person has the relevant skills, s/he will be on the way to a freelance career! There are lots of opportunities for the freelancer to gain legitimacy through testimonials and ratings by their clients. This further creates employment opportunities. In short, DREAM BIG!
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 who has very successfully parlayed her celebrity into an amazing amount of publicity for these therapies. McCarthy’s testimonial regarding her son is very powerful; however, testimonials, as I have warned about before, are no substitute for research. Proponents will tell you that there is research; however, the research done on both diets and vitamin therapy is very poor. As is said often casually among researchers: “Garbage In, Garbage Out”. In other words, bad data is worse than no data because bad data motivates people to try therapies that they would otherwise not try. Some argue that there is no “harm” in trying some therapies; however, if the data is misleading, and a child receives therapy outside of a controlled research situation, there is NO way for the parent to know whether the therapy is effective. For years, children are on restrictive diets or on a regimen of mega-doses of vitamins without knowing whether it is the diet, the vitamins or some other influence which may create observed improvements in the child’s condition.
I have a huge amount of respect for parents who advocate on behalf of children with autism; I am simply saddened by all the potential energy and publicity being focused on therapies which are completely experimental at this point.
I’d love to see well-meaning celebrities such as Ms. McCarthy fund high quality, truly independent, research on these various, unsubstantiated treatments. A high quality study conducted by researchers who have NO agenda other than science, would be a valuable contribution to the field of autism treatment since we would be able to know whether diet, and/or vitamin therapy works for even a subset of children on the autism spectrum....
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. For every one article I read on science-based treatment, there are over a dozen articles on treatments that have no evidence whatsoever regarding their efficacy. I applaud those researchers who keep reminding parents about science-based treatment - a thankless job. Desperate parents generally do not want to hear that their latest “treatment find” doesn’t deserve to be found. In addition, even when parents do believe in science, it is very difficult to differentiate between science-based treatments and quackery, particularly when a considerable number of researchers with Ph.D.s behind their names support treatments that are half-baked, or completely experimental. The Complete Guide to Autism Treatments devotes almost 100 pages to this very topic in an attempt to inoculate parents against quackery; however, parents need to spend the time reading to protect themselves and their children by becoming educated about how science does and does not work. The irony is that parents of newly diagnosed children are generally frantic to find treatment, often exhausted from not sleeping through the night, and frequently depressed because they worry about their child’s future. Reading a book on science may not necessarily be high on their list of priorities. To that end, particularly for new parents, I’d like to share simply one of the many RED FLAGS when it comes to treatments:
Do NOT believe personal testimonials without serious scientific backup!
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!
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. The article claims that the child was being bullied and the psychiatrist wanted her son to be transferred to another school; however, people do not murdered their children and then “off” themselves due to bullying. This phenomenon happens much too often and indicates a more serious problem: societies have not yet figured out how to accommodate children with this disability. The stress on parents is so great that those unable to manage the advocacy against large bureaucracies (and it is always against large bureaucracies), take desperate measures. In the case of the psychiatrist and her son, she was fighting the school system, which is set up to protect itself from “demanding” parents. This is why it is so important for parents of children with autism to advocate together and, when necessary, lawyer up. With the increase in children being diagnosed with autism, perhaps the system will be forced to be more accommodating; however, the opposite may occur and these unconscionable murder suicides may increase. Let’s hope not.
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! Remember, autism is characterized by a COMMUNICATION disorder, which means that if you can eloquently argue your case that you are indeed autistic, guess what? You’ve just lost the debate!!!
I’m terribly sorry if I’m breaking some social norm by which it is considered “unseemly” to question the diagnosis of a person with autism; however, it does a huge disservice to people who actually have autism to consider these individuals (who may or may not have Asperger’s Syndrome or be on the autism spectrum at all) as in any way suffering from the same disorder!!!
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; however, the science has come so far, particularly in the last 25 years, that it is inexcusable that people who work in any capacity caring for a severely disabled person do not have the required training or motivation to use that training. Ironically, this horrendous act occurred in a state that is very advanced when it comes to working with people with autism and the investigation suggests that the caregiver was not using the appropriate protocol; however, it begs the question as to why we do not have systems in place insuring that disabled people in the care of others are not either incompetent or malevolent! It is not enough to have compassionate people care-giving to disabled people; there needs to be systems in place that make any kind of abuse immediately noticed and stopped.
Let’s hope that this incident will make the State of New York become a leader in employee monitoring systems at their various facilities. If the Judge in the case orders it, that would be a first step...
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. To the uninitiated, this looks great! I get almost two dozen DVDs representing 17 experts and/or eloquent autistic adults (which is an oxymoron in itself) sharing their opinions on autism. At first glance, this looks like such a bargain; however, upon closer inspection, what exactly am I buying? Well..., out of all these experts, here’s what you get:
1 DVD that discuss Applied Behavior Analysis (ABA)
2 DVDs that discuss inclusion in the classroom with (ABA)
And that, my fellow parents, is where anything to do with science-based treatments end. So..., $127.00 doesn’t look like such a great offer after all!
Today I opened my e-mail and was very pleased to see the latest Newsletter from the Association for Science in Autism Treatment. It is a particularly good newsletter (and timely considering the variety of films being produced in Hollywood). In addition, there is a great "Consumer Corner" with useful discussions for parents who are having difficulty with dental exams, & food selectivity. I was also pleased to see the short (but chock full of info.) research reviews.
I strongly recommend signing up for this free newsletter. I would have loved a resource like this when my child was young.