I have been struggling with this one for a long while honestly. But the past few days have been the nail in this coffin…
Disagree with me if you want…BUT I believe that in this case naming and shaming has a place…
My disillusionment began months ago at a day long conference sponsored by the local group…I was the only smiling face in the place. Even the speaker…and for the next few hours I listened to nothing but how hard their lives were, what a burden their children were, how the schools, council and everyone else needed to do more…
No true empathy from these neurotypical parents for their neurodivergent children.
No sense of responsibility for researching and trying new approaches themselves…it was someone else’s job to save them from their child.
My heart broke because I have also seen these same people say that same stuff…int their children’s presence. He is autistic. NOT DEAF! Do you have any idea what you are doing to his mental health?
I almost missed the most important conference of my life on autism…#autismfestival17. When I saw that one of the sponsors was NAS…I almost did not go. When I got there and walked around the tables to one expensive ABA consultant after another hawking their snake oil to desperate people, I almost said…f*%$ it and went home.
I am SOOOOOOOOOOOO glad that I did not. Because for the first time ever I saw autism truly celebrated. I learned about neurodivergence, spoon theory and the social model of disability. Here were neurodivergent adults speaking about being HAPPILY autistic. At last I had found people who understood what I wanted for my child.
Not to be forced to fit into the broken box of the neurotypical world through damaging therapies like ABA.
Not anyone’s f-ing sympathy…we are truly HAPPILY AUTISTIC in #HomeCrazzyHome.
And most certainly NOT A CURE for a brain that I believe holds more potential than is humanly imaginably…at least by NT standards.
But still I struggled. Maybe the way forward was to work within these organizations…maybe my role was to advocate a more compassionate view of parenting an autistic child…maybe they could change…come around to a more INCLUSIVE way of thinking and being?
Then a couple of days ago I read a blog on my Twitter feed from a neurodivergent person who had attended an NAS sponsored conference on mental health in autism. That blog was as long as some of mine…detailing a litany of non-inclusive transgressions by the planners and organizers.
But what concerned me most was that the internationally acclaimed speaker made jokes at the expense of autistic people. That is totally and completely inappropriate and disrespectful.
All this time I have listened…with an open mind and heart to why neurodivergent organization need neurodivergent leadership…nothing could have ever made that clearer to me.
That is why I BELIEVE: (as in personal conviction…subjective and not objective. As such I speak only for myself…no one else.)
The NAS is not about helping AUTISTIC people…not primarily. Not as they themselves say they need to be supported.
It is about funding research into cures…be that causes so neurodivergence can be eliminated before birth or debilitating therapies like ABA which demeans, degrades and dehumanizes the individual…
All in an effort to make life easier for neurotypical parents and society.
And that is not something I can support any longer.
Where do I go from here? I don’t know. I admit I am a mostly neurotypical parent doing all I know…and loads that I don’t…to build upon my multiply neurodivergent child’s strength…so that she can face the future without mental health issues. At the bottom line, all I want is a world where her differences are celebrated and she is free to be all that she can be…
A HAPPILY AUTISTIC HUMAN BEING!