Autism Speaks and is told to “Shut Up”

So I am very confused today.

I teach autistic students, I come from a family of autistics, and I am autistic myself. Thrice diagnosed, and a member of three prominent autism research groups. I am butt deep in autism aid, and research and I live the autistic life every day.

BUT

To me one of the most depressing trends in “autism support groups” these days is that normal parents of autistic children have a tendency to attack those of us who are adults on the spectrum for wanting aid and advice. And the more high functioning, the more “successful” the worse the attack.


A caveat here – NOT ALL PARENTS, NOT ALL FAMILY _ some of you are totally awesome and are doing fantastic jobs, but there is a growing body, especially adherents of the #AutismSpeaks movement, that really really scare me.

Today I posted a question about a student/parent relationship online (without using any names) and was instantly and virulently attacked by two different autistic mothers for being “judgmental and arrogant”.

Since I sought them out for advice and since the situation described included no judgments on my part I was really very hurt and confused. This sort of shit is the reason people like me consider suicide. Those meant to help us attack us.

And it usually is the neurotypical mother, father, brother or spouse that does the attacking.

I posted the exact same question in an Autist Only forum and received dozens of helpful, practical, and supportive comments.

I also received supportive and useful answers in a forum for doctors, therapists, and counselors of individuals on the ASD spectrum.

I was only attacked in the family forums. And especially the Facebook family forums.

And this is not the first time this has been an issue for me.

Oddly enough, I was once physically attacked at an autism rally in Hendersonville, NC by a parent for “faking” a serious condition for attention. Munchhausen’s in other words – itself a serious condition although NOT one I have! – after being verbal abused by other adults at the same rally.

And I had one physician in Asheville, NC tell me I could not possibly be autistic even though he had all of my charts, psychologists, fMRIs, MRIs, and clinical tests from Duke University and the Carolina Medical Centers in his hands.

So how exactly does this work?

If we do learn and do well and integrate all of our social training, if we do achieve a moderation of social integration and success then suddenly we are liars and fakers? Suddenly it’s okay to bully and abuse us? I mean do we all have to be “endorsed” like Temple Grandin (by Tony Atwood and Oliver Sacks) in order to actually be autistic?

If we are not burdens on society, if our parents and teachers, and therapists and doctors do GOOD jobs we are suddenly unworthy of help and love?

And even if we were faking how does that make it okay to attack us, to bully us, to hurt us?

Seriously what is going on here?

Are parents really being taught that we must fail, that we all will always need care, that we must by definition be and act handicapped?

Or is it an ego thing – do parents believe that if we succeed we will not love them anymore?

BELIEVE ME, we will always need and love you! But if you loved us wouldn’t you want us to succeed? To heal?

Would you not want us to rise above our limitations?

We are all DIFFERENT. We all have DIFFERENT needs. Some of us will be in care for the rest of our lives. Some of us will become CEOs, scientists, actors, authors. We will all walk different paths.

So why not walk with us instead of taking a rigid stance and locking us into your expectations and then attacking those of us who no longer fit into YOUR molds?

Sorry for the rant, but to me this is one of the most detrimental practices and one of the scariest things about the autism support movement. This really really needs to be fixed.

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