What neurodiversity means to me – by Jonathan Mitchell

cobwebIt is with great difficulty that I write these words. I have to resist the urge to pick up my pencil and shoelaces and twiddle. This is what I call the autistic self-stimulatory behavior that I’m compelled to do for hours on end. I rock back and forth and shake these due to having an autism spectrum disorder. I’m a fifty-nine year old man who’s never had a full-fledged girlfriend. I’ve had very few friends. I’ve been fired from more than twenty jobs and had to retire at an early age. I attended special education schools for eight years. I was expelled from a regular school after half a semester. I have very poor fine motor coordination and can barely handwrite.

Nearly twenty years ago, I read Jim Sinclair’s essay Don’t Mourn For Us and his other writings. I was shocked to discover that anyone would believe that autism was nothing less than a serious disorder and would be opposed to curing it.

Over the years, as the Internet and listservs came into vogue, I read more and more persons on the spectrum claiming that not only did they not want a cure but that most persons on the spectrum didn’t. They went further to claim that with the proper accommodations autistic people would not be disabled.

I don’t understand these beliefs. There are others with autism far more severely disabled than these people and myself. They can’t speak. They engage in self-injurious behavior. These individuals can’t care for themselves at all. If an adult over the age of consent does not wish a cure for their condition that’s fine. I have no problem with that. Unfortunately most advocates of neurodiversity go further than this. They state that not only do they not want to be cured, but that no one no matter how severe their autism is should be cured.

It would seem that to any reasonable person these views would be considered nothing less than being deeply on the fringe of fanciful thinking. However, this is not the case. As the rate of autism diagnoses has risen, the neurodiversity movement has risen in proportion to match these. Members of the neurodiversity movement have created organizations over the years. These include the Autistic Self Advocacy Network and the Global and Regional Asperger’s Syndrome Partnership. They have been allowed to testify before Congress. Five individuals on the spectrum who oppose a cure have been appointed as public members to the Interagency Autism Coordinating Committee, the group that advises the government on autism research and policy. To date, zero autistics who don’t believe in neurodiversity and wish for a cure have been appointed. This is in spite of the fact that I know of one who wishes to be on this committee. So far, his wishes have been spurned. Alex Plank, another member of neurodiversity on the spectrum, has been a keynote speaker at the National Conference of the Autism Society of America. John Elder Robison, another neurodiversity proponent, served on the scientific advisory board of Autism Speaks. Autism Speaks gave a half a million dollar research grant to neurodiversity scientist Laurent Mottron. They also financed Alex Plank’s Autism Talk TV. To the best of my knowledge, they have never financed any endeavor of an anti-neurodiversity pro-cure, pro-treatment autistic person.

Many of those who preach the neurodiversity mantra argue that autistics who believe they are diseased and disordered and wish for a cure are few and far between. Their contention is that it is the parents of autistic children who are trying to impose something on an entire population that doesn’t want it. In fact, they have claimed that the attitude of Autism Speaks and parents who wish to cure their children is nothing less than eugenics. Many of them believe that cure is a code word for finding a way to deliberately abort autistic fetuses and this would be done.

Contrary to what they believe, as I continue to write posts on my blog, Autism’s Gadfly, and continue to use social media, I encounter more and more persons who reject neurodiversity. I believe the tide is turning and there will be more autistic voices clamoring for treatments and hoping for a cure.

Will a cure be found in our lifetime? I don’t know the answer to that for sure, but there are some who believe it won’t be. For this reason, some say the debate over a cure is pointless and moot. Writer Andrew Solomon compared the debate over a cure to one on intergalactic space travel. That may be a valid point. I’m still interested in having scientific research funded because even if a cure is not possible in the foreseeable future, perhaps it will help us find more effective treatments in lieu of a cure. This would be the next best thing. Neurodiversity wants to stifle this research. They’ve protested vigorously over it. They’ve spent time picketing Autism Speaks and harassing parents who want a better life for their children. I believe this research will continue and hopefully effective treatments and perhaps even a cure may be found in spite of neurodiversity’s protests. I’m reminded of the Arab proverb the dogs may bark but the caravan moves on.

JMitchellAbout Jonathan Mitchell

Johnathan Mitchell is a 59-year-old man living in Los Angeles with a diagnosis of autism who writes fiction and occasionally plays poker and has a blog www.autismgadfly.blogspot.com

 

Opinions expressed by Autism Daily Newscast Contributors are their own. Comments on individual articles in this series are closed but we encourage readers to add their thoughts on the opening article to this series that can be found here.

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