The Autism Society of Central Virgina

I had always been treated like I was capable, or like I should be capable. I had been, that is, until I started volunteering at the Autism Society of Central Virginia (ASCV). Suddenly, the stress that sometimes comes with the territory of being treated like I “should be capable” wasn’t so bad. Here, at the ASCV, I was treated like I was retarded. It turns out the places that act like they care the most about autistic people are the places that are the most condescending and judgmental towards autistic people, and this kind of experience was extremely common in my time working and volunteering in this world. If I didn’t have a PhD in chemistry as a sanity check, I don’t know how I would have managed. Most people who have to bear the label of autistic do not have a way to fight back against this gaslighting of their capabilities.

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I remember at one of the first events I volunteered at, someone had knocked over my bag that had my coffee in it, which then got all over the certificates the participants were supposed to get at the end of the day for that week of the summer cooking program. I panicked momentarily, then decided to get them reprinted at a local library. I asked the program director, Jon, to send me the files when he had a minute, then walked over to the library at VCU, where I asked the student at the front desk for a favor. They said that they don’t normally let non-students print but used their personal code to help me. I happily walked back and gave the fresh certificates to Jon, who looked at me in absolute shock that I was able to accomplish such a task. Instead of grateful, he was surprised, which stood out to me. It was the first time anyone had ever seemed surprised that I was able to do something. I chose not to address it because I didn’t want to embarrass Jon for making such an asinine assumption about me. That was by far not the last time I had people make that assumption about me while in the autism world though. Other things I heard by others at related events included, “Wow you talk just like my son! But you can do things! And you don’t get upset!” or the time someone asked me if I had driven or been dropped off at the end of a class I was leading.​

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Eventually, Jon asked me to join the self-advocacy council with the ASCV. There we sat every second Thursday of the month on Zoom while he explained to us the programming for the month and how great it would be if the self-advocates came out to the events. He looked annoyed when someone else talked too long, and we had very little say in the organization. It felt like we were just puppets to show that the ASCV did actually care what autistic people had to say.

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When I brought up to the group on the self-advocate WhatsApp some of the abuses I saw in ABA, Jon shut down the WhatsApp group and said it was against the ASCV policy to use outside communication. I was told privately by Jon not to talk about “upsetting things” to the other members because they “weren’t as capable as me.” Even though the other members brought up valid points, like one of my friends who told me that when they were enrolled in Faison’s college prep program, they were talked down to like they were children (despite literally being in a college prep program), and another friend who worked at Faison who said she had PTSD from seeing how the students were treated there. Even though she had become very distressed from thinking about the things she witnessed, she told me she wanted to do something about it and that she was glad to be able to share what she saw. Jon removed the ability for us to discuss these things and took away our voice. He also told us to stop speaking negatively about Autism Speaks, because the ASCV was reliant on them for money for the new facility.

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Later, Jon asked me to do the “what is autism” portion of the training for staff and volunteers of the ASCV. He said it was too awkward if a non-self-advocate did that section. I agreed, but when I read the slides, it was clear why it was awkward. Almost every slide was insulting to autistic people, including one that said needlessly said we are "messy eaters." He wanted me to talk badly about autistic people because it is more palatable to people when someone talks negatively about their own group. I tried to fix the slides to be more kind to autistic people, but he told me that I needed to make it geared towards the parents.

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His portion on the presentation was on the “ABCs of behavior." I tried to fix the behavior portion of the slides too to make them more about assent, but he said that since I wasn’t yet a BCBA, I didn’t have the authority to change the slides, even though when he worked in the field he had only ever been a tech. He began posturing about how he had experience working with “real” level 3 autistic people, and how my experience working with level 3 autistic people “didn’t count.” In places such as the ASCV, ABA gets used as a status booster even while they outwardly decry it. I removed myself from the presentation.

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We were then told we needed to sign a document saying that we agreed that the ASCV was the final authority over anything the self-advocate council did. I asked to be on the board or junior board, since they allowed ABA people to be on the board and junior board, so that autistic people could have an actual say in the organization as well. I was asked to leave the organization. Many of my friends from the self-advocate council chose to leave the council too when I told them what happened.

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One of the reasons I do not use disability framing like many advocates is because I have experienced how night-and-day autistic people are treated when they are viewed as disabled versus capable, with the disability framing being much harder to fix. While some may just call that ableism, I would rather just use minority/protected class framing that does not depend on how capable someone is. It has been controversially argued that being a woman or being Black is a disability due to social challenges, but even so, those groups have their own label that is a protected class that does not depend on how incapable they are, which autistic people do not have. This is also why I believe it is important to define autism, so that vague assumptions about someone's capability can be challenged and autistic people can have a say in how they are defined.

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