I recently read an interesting interview with Ari Ne’eman, the first presidential appointee to the National Council on Disability (NCD) who was diagnosed with Asperger’s Syndrome in 2000. Currently, at the age of 22, he is one of the youngest appointees in history.
Mr. Ne’eman is the Founding President of The Autistic Self Advocacy Network (ASAN), a non-profit organization run by individuals on the autism spectrum to “…advance the principles of the disability rights movement in the world of autism.”
He is a proponent of the neurodiversity movement in which the idea is to promote the acceptance of autism as a variation rather than a deviation in society.
This is not just a philosophical issue, it is one being played out in the halls of Congress as they reform health care, education, support services and employment policies for people with disabilities. There are strong feelings on both sides of the issue as some advocate time and money be spent on finding the causes and cures for autism while others, like Ne’eman, advocate that such resources be spent on helping to promote a greater awareness for the rights of people with autism and providing the supports they need.
Making this a ‘black or white’ issue is really sad in my opinion. My experience suggests that there are many parents who recognize their child’s autism as a ‘difference’ and want to give them every support they can, accept them for who they are and fight for their child’s rights. Yet, at the same time, if they could, they would wave a magic wand to protect their children from the ridicule, the bullying, and the numerous struggles they experience throughout their lives. That doesn’t necessarily mean that they would get rid of the autism or autistic traits. It’s simply not an all or none issue.
At the same time, there may be some families, despite their love for their child, that wish there was a cure or something that would alleviate the day in and day out struggles of toileting issues, feeding issues, communication and mobility issues, just to mention a few. Finding causes and cures does not preclude advocating acceptance, tolerance and putting support services in place. The argument that if a ‘cure’ is found than people like Mr. Ne’eman would cease to exist is very difficult for me to comprehend. There are too many ways that autism spectrum disorders manifest themselves.