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.