Building Autistic representation in autism services
A few months ago, I was hired on at Behavior Bridges, an autism clinic in Puyallup, Washington, as their Inclusion Director. While the largest part of my work there is running their various geek centric groups (mostly tabletop gaming and D&D), my official title is inclusion director, and a big role there is to normalize autistics in autism services.
Being the only openly autistic in a clinic that does ABA is a difficult prospect for many autism advocates, and I only took the position because I have a tremendous amount of trust in the director, who I've known for years and has regularly deferred to me for my autistic perspective. We both are in agreement that there needs to be better incorporation of autistics in autism services, as "Nothing about us without us" is a key piece in disability advocacy.
So, my work in disability advocacy continues. Here's a few big takeaways from my work:
-It's intersectional:
A big part of my work is looking at how the field of autism services and the historical exclusion of autistics from leadership and speaking roles in the field impacts it, and looking at other areas where that has happened, and sadly it's rather endemic, but that's an area to find shared experience. The shortage of BIPOC, queer, etc doctors, teachers, etc, leads to significant impacts in services to those populations due to all kinds of unconscious or conscious bias, as well as a lack of lived experiences and cultural navigation. Bringing all of this to the front in a larger conversation about representation helps remind people that they can see autism as a disability or a culture, and that it is both, but it's essential to let autistics lead the conversations about their own experiences.
-Finding the right culture and fit is essential right now:
As it stands, I am a unicorn. There aren't a lot of people with my skillset and background, and there aren't a lot of agencies that would have the funding to hire me. I've been very lucky to land where I have, but this is not a common or normal thing. But it should be- There should be a place for autistic representation in all levels of autism services- which leads me to my next point.
-It's not one size fits all: I'm realizing that what I can do for a school district is not the same as what I can do for consulting for an ABA clinic is not what I can do for helping train a boys and girls club is not what I can do for a vocational agency. Being flexible in how you can incorporate autistic representation meaningfully is essential, which means that as more people like me find themselves getting into the field, there might be multiple different jobs around this. That being said, figuring out how to fund that is critical, and needs to be brought up as an essential need to provide quality autism services. Without autistic incorporation, you can not provide good autism services.
-People genuinely want to understand the adult autistic perspective:
The number of people wanting to hear my story and get an understanding of how a successful autistic exists in the world is huge. There's so many stories of autistics who live with their parents indefinitely or get stuck in the disability system or end up homeless, with a smattering of success stories about autistics who end up in IT, but very little representation in social services, being able to speak to parents and providers. This becomes increasingly relevant around understanding big behaviors or combating hopelessness with parents.
-Kids need to see adult autistics:
Most kids don't see adult autistics. They see a lot of adults behaving in ways that aren't exactly normative around them, or are flat out ableist, but as far as seeing adults that act like them, that's a rarity. One of the best things I've been able to do is just be my genuine autistic self around kids, and they love it. One kid stated that he could tell I was autistic because I was good at legos, and I think that should be added to the DSM-6 for autism.
-Autistics benefit from navigating each other's neurodiversity from an autistic perspective:
There's an instinct with professionals to try to resolve conflict with autistics socially, but I think that instinct needs to be resisted, and as an autistic, I'm very good at letting that happen, letting kids get into arguments, and solving it on their own, often in a way that honors their autism. Knowing where the line is to step in, or perhaps provide some minor guidance, is key, and I think having my own experience having to grow up with other autistics and navigate their neurodiversity with my own has given me very strong insight on how to let this happen.
There's a lot of other things I've been building and learning, but so much of it is still being processed, so I'll save it for another time- but I think this is an important step in modeling autistic inclusion into autism services, something that desperately needs to be normalized. If you are providing autism services, but not including autistics, you are not providing good autism services.