One of the great surprises of the Obama administration, for this Canadian father of a 14 year old boy with severe Autistic Disorder, and long time autism advocate, is the nomination of a divisive, confrontational but very high functioning young university student with Aspergers to a prominent US disability council. Mr. Obama won respect around the world, including here in Canada, for his ability to reach across traditional political battle lines to move forward with a consensus. Yet, with the nomination of Ari Ne'eman President Obama has nominated a young man of limited experience with, or knowledge of, autism disorders and absolutely no experience with severe Autistic Disorders who opposes curing autism, and mocks and ridicules the concept of recovery from autism disorders despite the work done over many years by people like Dr. Doreen Granpeesheh of CARD to do exactly that.
Mr. Ne'eman also attacks the Autism Speaks organization which has raised autism awareness substantially by its many high profile media events and by its involvement in the establishment of World Autism Awareness Day recognized by the United Nations. Mr. Ne'eman himself has found an organization led by people just like him ... very high functioning autistic persons or persons with Aspergers. He has displayed in his public comments no understanding of the serious life long challenges facing severely autistic children and adults.
Nor has he shown any respect whatsoever for the role of parents in raising severely autistic children to live the most fulfilling lives possible and the wishes of many of them that research aimed at finding autism treatments and cures continue. Mr. Ne'eman, the young university student, views the "autism spectrum" as an entity of which he is the natural leader. In Mr.Ne'eman's mind he is better suited as a person with an extremely mild form of autism spectrum disorder to decide what is important for severely autistic children than the parents and families who care for and love them. For President Obama to embrace this divisive ego as a disability council nominee is bizarre and unsettling.
My opinion carries zero weight in US political matters. Perhaps as a Canadian my opinion actually carries a negative factor. But as the father of a severely autistic son who was diagnosed with his Autistic Disorder before Mr. Ne'eman received his very mild Aspergers diagnosis, and who has been involved in autism advocacy for a dozen years, I know that this appointment will cause great harm to the future prospects of the severely autistic in the US and elsewhere in the world beginning right here in Canada where US influence is not an abstraction but a fact of daily life. For many years US autism research, including the research conducted by Dr. Ivar Lovaas, and the work done at places like CARD and the May Institute, have been huge positive influences in helping Canadian children with autism disorders including my son. It now looks as though US autism thinking is taking a turn for the worse and that will be felt here in Canada... to the detriment of children with severe Autistic Disorder ... children like my son Conor.