Aug 2011
We're Aware Already!
31/08/11 09:30 Filed in: autism | Asperger's Syndrome
Year after year, we keep hearing the same message: Autism Awareness, Autism Awareness... I think that at this point, we are already aware and it is time to tell people what to do with their awareness! With highly effective commercials supported by a large number of well-meaning celebrities, the autism community has done a great job publicizing autism to the public. Now what? Here’s a blueprint for the next phase:
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!
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?
Back to School for Children with Autism: When Do I Put my Lawyer on Speed-Dial?
30/08/11 09:21 Filed in: autism | Asperger's Syndrome
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!
An Inconvenient Truth for Autism film: Third trailer available for viewing
28/08/11 19:58 Filed in: autism | Asperger's Syndrome
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!
Vaccines & Autism: Mistrust and the Public Health Dilemma
26/08/11 15:43 Filed in: autism | Asperger's Syndrome
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!
Riding the wave of quackery!
25/08/11 18:27 Filed in: autism | Asperger's Syndrome
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.
Political Correctness and the SLP
25/08/11 09:17 Filed in: autism
What is the role of a Speech and Language Pathologist (SLP) in the treatment of autism? It makes sense that when a child doesn’t speak or understand, this would be the first place to go for help. Correct? Not so fast... Yesterday, MSN Health and Fitness attempted to give the parent of a child with autism 10 questions to ask the SLP to ensure that the parent understands what the SLP has to offer. Then the Health writers slip under their politically correct blanket when they say, “interventions also vary widely... That’s why it’s essential to get individualized answers to your questions...” Wow!!! That sure was helpful, wasn’t it?
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.
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.
Lawyers are a kid's best friend!
24/08/11 09:52 Filed in: autism | Asperger's Syndrome
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!
We may be under water, but our kids aren't
23/08/11 09:31 Filed in: autism | Asperger's Syndrome
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.
It's a small, small world...
22/08/11 11:11 Filed in: autism | Asperger's Syndrome
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...
A Review of Staging a Miracle: A Practical Parent’s Guide To Surviving an Autism Diagnosis
19/08/11 19:11 Filed in: autism | Asperger's Syndrome
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.
Does Asperger's syndrome deserve to be eliminated?
19/08/11 10:46 Filed in: autism | Asperger's Syndrome
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?
Do we feel lucky? Autism and the sibling question
18/08/11 11:30 Filed in: autism | Asperger's Syndrome
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!
Stop conflating autism with Asperger's Syndrome and pathologizing brilliance!
17/08/11 09:48 Filed in: autism | Asperger's Syndrome
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...
We'd love to help, but we've got no resources... Really?
16/08/11 10:11 Filed in: autism | Asperger's Syndrome
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.
Parliamentary Democracies
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).
Good luck, and remember to have your lawyer on speed-dial!
Autism's "Inconvenient Truth": Trailer 2
15/08/11 12:47 Filed in: autism | Asperger's Syndrome
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!
Risk of autism recurrence higher than we thought: wait a minute!
15/08/11 09:45 Filed in: autism | Asperger's Syndrome
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!
More useless advice from generic experts...
12/08/11 10:49 Filed in: autism | Asperger's Syndrome
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!
Positive behavior support gaining ground!
11/08/11 09:19 Filed in: autism | Asperger's Syndrome
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!
Child safety & autism: IBS in the making...
10/08/11 11:14 Filed in: autism | Asperger's Syndrome
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.
Internet and brain function: cause or correlation?
09/08/11 11:49 Filed in: autism | Asperger's Syndrome
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!
Celebrities and autism "expertise"
08/08/11 12:16 Filed in: autism | Asperger's Syndrome
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....
Is science coming back into fashion?
08/08/11 09:12 Filed in: autism | Asperger's Syndrome
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!
Finally, an "Inconvenient Truth" for Autism!
08/08/11 08:57 Filed in: autism | Asperger's Syndrome
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!
How it was that bad...
05/08/11 11:50 Filed in: autism | Asperger's Syndrome
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.
If I had a nickel for every eloquent person who claims to have autism...
04/08/11 11:36 Filed in: autism | Asperger's Syndrome
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!!!
Clearly, we haven't yet left the dark ages...
03/08/11 18:44 Filed in: autism | Asperger's Syndrome
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...
Another day, another so-called expert...
02/08/11 16:23 Filed in: autism | Asperger's Syndrome
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!
ASAT's newsletter has got me thinking ...
01/08/11 17:25 Filed in: autism | Asperger's Syndrome
Of course, now ASAT has got me thinking critically about the various studies! Regarding the Citalopram study referenced in the newsletter, I think that this study is highly flawed (and the flaw is subtle). Their sample group is problematic because they took children on the spectrum that displayed "moderate levels of repetitive behaviors" as defined by the Children’s Yale-Brown Obsessive Compulsive Scales modified for PDD and then randomized this group of children. Here's the problem (and I think most of us who are exposed to children with autism in an intensive way know this): repetitive behaviors that are self-stimulatory in nature are different from repetitive behaviors that are obsessive compulsive (OCD). It is difficult to see the difference unless the researcher has been exposed to many children for a considerable period of time. The main difference in my view is that the child who engages in “self stim” looks like s/he is enjoying the experience (rather than is driven to perform the behavior out of compulsion and is relieved when the compulsive behavior is completed). Since some children on the spectrum also experience OCD (which generally goes undiagnosed), their behavior may improve on citralopram; however, if most of the children in the study do not also suffer from OCD, then there will be no effect. My point here is that they need to redo the study with children on the ASD spectrum whose repetitive behaviors are a function of OCD rather than a kind of self-stimulatory behavior. I think that they will be much more likely to find an effect if they redesign their study...
ASAT's latest newsletter has arrived!
01/08/11 08:22 Filed in: autism | Asperger's Syndrome
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.
Happy reading!