Listening to Autistic Adults (Part I)

When I was little, diagnosed autistic, my parents were told to find a nice place to send me and go have a life because there was no hope for anything resembling happiness with someone like me.

They were appalled and scared, sad and confused. The Very Smart Experts told them that another child would bring more tragedy. They convinced my dear parents that a boutique institution, disguised as a school, would make me less burdensome, almost desirable.

I was there for a few years and I saw and experienced abusive treatments. I was finally rescued by my parents who were becoming those amazing advocates, learning the laws and understanding that everyone deserves an education and opportunities.

They created a foundation, employed disabled people; my mom made a series of small documentaries and won an EMMY. My dad got me in the best school available at the time, and he went on helping other families.

He is still doing this but my mom had to go back to work full-time at some point. I know she would be the biggest supporter of my activism today. She did not see any of it but she had a mantra:

“Amy can!”

She was right.

Back to my dad: like most parents of disabled kids, he had to learn how to advocate for my needs; he took me to every specialist of every specialty seemingly related to autism; we walked for a cure together because that was what people did.

There was not a lot of thought into how autistic adults felt and what autistic adults thought. Autistic adults who had a meaningful life were aliens, from an imaginary place.

My dad changed. He met autistic adults very different from me; he saw the possibilities in me; he saw me, he listened to me. He always loved me completely, even when his expectations were low. But now he was proud of me.

What he wasn’t doing was listening to autistic adults. He admired them, but did not listen to them. He was doing the parent advocacy thing, listening to other parents who didn’t listen to autistic adults either, listening to “experts” who didn’t (still don’t) know much about what autism really is. They act like they do, but many of them do just that: acting.

But things are slowly changing. My father is changing, other parents are changing.

I know that years ago autistic adults were not heard because they were not seen as part of humanity, they could not speak and were considered unable to understand, or they were so smart, they became zoo exhibits. Very few individuals with extraordinary powers, inspiration, Rain Man!

Today we are more organized, we value diversity, we (at least some of us) reject the old grading of how valuable each one of us is. Any autistic can be an activist and demand to be heard.

Yes, we are speaking up, about anything that concerns us. We are letting the world know how wrong and unhelpful some so-called therapies are, how we feel when any disabled person is dismissed, ignored, attacked and murdered. We are showing our insight through personal experience.

We do that because what was done to us and how we were treated was, many times, ugly.

We do that because we – many of us – have a deep sense of community and we have each other’s back.

We do that because we want the next generation of autistics to experience acceptance without conditions, without having to pretend to be less autistic. They are part of our community.

The good news is: we are achieving some success. More parents are coming to us for a better understanding of their young children’s ways of dealing with the complexities of a complicated neuromajority-directed world. My father is changing too, listening to me and to my friends. He will be a better advocate, a real advocate for all autistics.

More parents are not afraid of asking questions because they know one or more autistic adult will be able to have some insight about things an autistic child is experiencing.

Those parents are not looking for a cure. They are trying to help their autistic child be the best he or she can be.

And they are coming to us for support. And we thrive to support them with the best advice we can give. We welcome their children into our community, we welcome parent-allies.

This makes me happy.

I am happy to see parents joining autistic adults to help their children be autistic happy.

To be continued…
Amy Sequenzia, AWN Contributing Writer  About the Author, Amy Sequenzia.