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Sharron Angle isn’t alone in her opposition to mandating private insurance coverage for “autism.”

According to the  Washington Post, Mark Kevin Lloyd, Chairman of the Virginia Tea Party Patriot Federation, believes that families affected by autism ought to rely on charitable individuals and groups to fund treatment. 

Mr. Lloyd acknowledges that  “autism is certainly a heartbreaking condition and the treatments are a terrible financial strain for many families,”  but explains his opposition to the bill, in part, by saying that “government is not an arm of  compassion, and no matter how well intended, can never replace faith-based and private initiatives.”

I’m wondering if Mr. Lloyd believes that compassionate faith-based initiatives are also the appropriate source of funding for treatment of other expensive and heartbreaking conditions including cancer, for example.

Senators Chris Dodd (D) CT and Robert Menendez (D) NJ today introduced legislation which aims to support autism research and services.  The bill aims to maintain the programs established under the Combating Autism Act of 2006.   Additionally, it calls for investments in services and the creation of a National Institute of Autism Spectrum Disorders within the National Institutes of Health (NIH). 

The great news is that if passed, the bill will create service provision grant programs for states as well as private and public non-profit entities.  I know that autism research is really, really important, but it is nice to see some funding for services in the bill.

It’s great to see the Las Vegas Sun reporting that an 8-year-old autistic girl earned a black belt in Taekwondo.  Sonya Dilks, who has been training since she was 2-years old, is one of the youngest students to earn a black belt at the DoJang martial arts center in Henderson, NV.

This is an encouraging story because it demonstrates that with the necessary support, an autistic child can excel even in an activity that requires tremendous discipline and focus.  In Sonya’s case, she had the support of her two older brothers who were also enrolled in classes at the center.   Over the course of several years, Sonya’s instructor and her brothers learned that by using colors as code words, they could keep her focused on the task at hand.

Now it looks like Sonya might try tennis or swimming because her parents believe that that these sports are well suited to autistic children.   We have found that MJ really enjoys swimming.  He gets to the pool twice per week, 12 months per year, and has made great progress in swimming independently.  I don’t expect that he will be an Olympian, but he really does enjoy it, and we know that he needs the exercise.

It is sometimes challenging  to find physical activities that an autistic child will enjoy.  It is even more challenging to invest the time, energy and thought necessary to help them improve their skills and possibly excel at their preferred activity.   David Dilks, Sonya’s father, described the process:  “You do have your highs and your lows. It’s like a chess game. You have to think three steps ahead of the child to get them to do what you want them to do…It’s a train, and you have to get it back on the track.”

According to ModernHealthcare.com the National Institutes of Health (NIH) has created a portal to give autism researchers access to information on more than 10,000 participants in ASD studies.

The National Database for Autism Research portal will be used to capture data from new research and combine it with existing data.  The database was designed to support studies which are expected to be conducted as a result of 50 autism research grants financed with more than $65 million in stimulus funds.

Julian Pecquet of  The Hill reports on a study showing that kids can recover from autism as a result of applied behavioral analysis and without the use of any drugs.   The study, which was funded by the State of Arizona and conducted by the Center for Autism and Related Disorders (CARD),  examined the effects of ABA on 14 young children.  The study found that six of the children no longer displayed clinical symptoms of autism and that most participants demonstrated improvement.

Of course it is possible that those kids who “recovered,” i.e. they no longer displayed any symptoms of autism, were only borderline ASD, but the obvious and important point to consider is that even the kids with slow progress demonstrated increases in communication and leisure skills and significant drops in challenging behaviors.   As indicated last week, these low-functioning kids are the ones who will likely benefit the most from this therapy.

I really don’t like the fact that autism self advocates, often high-functioning individuals diagnosed with Aspergers, claim to speak for all people with Autism Spectrum Disorders.

Don’t get me wrong.  I fully accept the fact that high-functioning adults have public spokespeople who will challenge public perceptions about autism.    I support the rights of  self advocates including  Ari Ne’eman of the Autistic Self Advocacy Network (ASAN) and Michelle Dawson, an outspoken opponent of applied behavioral analysis (ABA) to speak out on behalf of themselves and others who share their views and experiences.   However, I am deeply troubled by the fact that they claim to speak on behalf of low-functioning people with autism-people like my son.  In fact, some of Mr. Ne’eman’s and Ms. Dawson’s public comments suggest that they either don’t understand or don’t care to appropriately address the significant self-help deficits experienced by those at the other end of the spectrum.

Many people with Asperger’s celebrate neurodiversity, as I believe they should, to a certain extent.   Neurodiversity is an idea which asserts that  it is ok that some of us are “wired” differently and that those differences should be celebrated.  Neurodiversity proponents typically believe that efforts to minimize or eliminate neurological differences stifle their individuality and should be discouraged.  They want society to accept their differences rather than demand that they behave more like neurotypicals.  The problem is that similar neurological differences may manifest themselves very differently and to the much greater detriment of  low-functioning people on the spectrum.

High-functioning autistic people are seen as different or odd  because of their inability to relate to other people.  A family friend recently described his Aspergers-diagnosed son as “marching to a different drummer.”  The son was trying his hand at stand-up comedy, because his unusual take on the world often gets laughs.  Aspies may be challenged by very normal social situations but they often go on to lead highly productive and independent lives. Many of the world’s socially inept great thinkers including Beethoven, Michalangelo, Edison, and Einstein are believed to have suffered from Asperger’s Syndrome.

By contrast, the neurological differences experienced by my socially interested but low-functioning eight-year-old son have resulted in his inability to speak with his mouth.  They have also caused serious deficits in motor skills, attending skills and sensory integration which have seriously hindered his ability to acquire even the most basic self-help skills including toileting and brushing his teeth.

There was a long period of time when MJ would not tolerate a toothbrush in his mouth at all, and as a result, he was hospitalized for oral surgery on one occasion and had an abscess which  required a tooth extraction under anesthesia on a separate occasion.    On both occasions, it required three to four people (including me) to restrain him while he was being sedated.    The second time, my groggy 60-pound boy lay on top of me in the dentist’s chair as I wrapped my legs around his legs and my arms around his midsection to keep him stable as the damaged tooth was pulled from his mouth.   I remember thinking that I would do anything to get him to brush his teeth.

He does brush his teeth now thanks to a dedicated occupational therapist and ABA-based home program which was established by our parent trainer.   Using the principles of applied behavioral analysis , we were able to teach him to break down the task of brushing teeth into small manageable steps and modify his behavior in a way that has allowed him to achieve maximum independence in a reasonable amount of time.    He is also successfully toilet trained after many frustrating years, thanks to an ABA-based program.  Hooray for ABA.

Not so fast, says Ms. Dawson who condemns ABA as an unethical and potentially harmful method of  therapy which is forced upon autistic children without their informed consent.   Ms. Dawson, in an article entitled The Misbehaviour of Behaviourists , had this to say about parents like me:

Parents, and the industry supplying their demands, have met no opposition in widely diffusing their defamation of autistic people. It has been a successful strategy in meeting their needs, financial and otherwise. In order to continue to grow, prosper, and be paid for by the public, the autism-ABA industry has enhanced then exploited the non-autistic horror and dread of autism and autistics. The parents and their industry have marketed autistics as worthless agents of personal, social, and financial destruction. They have used sensationalism, and emotional and fiscal blackmail, and they have been praised and catered to.

Of course, I’m not defaming my son, nor am I suggesting he is worthless when I engage ABA therapists to help him brush his teeth, keep his pants dry and approach a level of independence enjoyed by Ms. Dawson.  (And just for the record, I’ve had exposure to many ABA experts in the past few years, and none has ever mentioned the word “aversives.” )   When Ms. Dawson, in her role as adult self-advocate,  challenged the medical necessity of ABA in Auton V. British Columbia, she succeeded in preventing many low-functioning children like my son from taking advantage it.

Mr. Ne’eman, through ASAN’s website, clearly disapproves of the educational arrangements my wife and I have made for our son.  Here is what he says about schools and programs which cater exclusively to children with autism:

When school districts maintain segregated classrooms and separate schools for students with disabilities, such as children on the autism spectrum, this is not an educational necessity but instead reflects outdated and exclusionary attitudes.

A separate school or “segregated” classroom may not have been necessary for Mr. Ne’eman, but this type of environment is absolutely essential for my son.  As his loving parent and legal guardian, I have actively been involved in the development and monitoring of  his IEP and have had the opportunity to see his tremendous progress first-hand.  He’d languish if he was mainstreamed.  Mr. Ne’eman, as you may have guessed, has never met my son and clearly can’t relate directly to his challenges.  So, which of us ought to speak on his behalf?

Self-advocates can play an important role in educating the public about autism and in fighting for increased acceptance and accommodation of all people with autism.   To a limited extent, they may be able to shed some light on what it must be like for my son and others to live with a very severe neurological disorder.   Beyond that, they have little in common him, and I’d prefer to make decisions on his behalf without being unnecessarily challenged or insulted.

I recently attended a great presentation on the Make Friends with Autism initiative of the Children’s Specialized Hospital at Autism New Jersey’s annual conference in Atlantic City.   The initiative, sponsored by Kohl’s, was launched to help people with autism become more fully engaged in community life.

Adrienne Robertiello, Community Autism Educator of  Children’s Specialized Hospital, began by showing a video produced for the initiative.  She spent much of the presentation enthusiastically describing tools developed for use by businesses, family and friends, and recreation providers with an interest in fully supporting people with autism.   She made a lot of sense when she stressed the fact that businesses have  much to gain when they become more aware  of the needs of patrons with autism.  

It was good to hear this message.  To a limited extent, my wife and I have been educating some local businesses about autism out of necessity.   For example when we go to local restaurants, we will ask for a booth, and explain that this will help us to keep our autistic child from leaving the table while we are eating.  (He generally does very well in restaurants, but he may be inclined to make a beeline for a drink at another table when given the chance.)  Any popular family restaurant with a limited number of booths may do well to allow families like ours to reserve one in advance.

Adrienne and her team are available to deliver on-site presentations, and autism advocates are encouraged to make use of the materials in their own communities.   All of the materials are free and downloadable from the Make Friends with Autism section of the Children’s Specialized Hospital website.