This month we’re asking our autistic community members What Do You Want? What Do You Need? We’re featuring their answers all April long, right here. Today we’re having a conversation with engineer Star Ford, whom we spoke with earlier this month about the Ocate Cliffs project. Please read, listen, and share.
There’s a lot of stuff out there aimed at or against autistic people — therapies and services — but there is a big disconnect between that and what we really need. The industry churns by its own internal incentives and since we’re generally not paying, we’re not driving — usually not even asked. I think most of us can feel what we don’t like, when an intervention is done to us, and many can also articulate what we don’t like. But fewer people can articulate why we don’t like it, and almost no one can articulate the alternatives. I’ve asked autistic people what services they “really need,” and searched blogs for it, and the answers, at first, don’t seem to be there.
I’m a pattern thinker and engineer, and creating systematic ways to accomplish things is what I do for a living, so I tend to apply that to everything. Usually if I study something long enough I arrive at some answers — systematic patterns, frameworks. So I’ve thought in that same way: what if autistic people designed our own support system, what would it look like? But my asserting that question and feeling consistent resistance tells me that there is already a breakdown in the very question, which I will get to in a minute.
First, here are some actual and plausible answers to the question “what do you need,” focusing on functional things:
- A ride to downtown
- Fixing my internet connectionA piece of fabric with 2 inch yellow stripes
- Someone to go with me to an office on Tuesday morning
- A weighted vest
- A quiet room
Sometimes the support systems can help, and sometimes the system response is something like:
- We don’t do that
- That isn’t important
- We can teach skills so you can do that yourself
Notice these things we need are highly specific and individualized. That’s one thing I’ve learned from just listening: autistic people very often articulate in detail the exact thing they need at that time.
In my life I’ve experienced it this way: I’m going along doing everything I can for myself, because I’m naturally independent, but some things I can’t do (because they require some buy-in from someone with more power) and that’s the obstacle. I have a path and I can’t go on until the first thing in my sequence is done. For me the biggest one is personal marketing — I needed someone to network and interview with me in academics and for my job. But there is no agency that can do that, so life is a series of closed doors and I don’t mature and move to the next level in that work arena because I’m still stuck at an “entry level” in work relationships, having not gotten that kind of individualized support.
I was lucky not to get the destructive kind of help, but I’ve seen it. A friend of mine was moving to an apartment, and she needed help, and the system offered lots of help, but it was all according to the agency’s way of doing things. She actually needed things like: an internet connection, a place to resolve problems with her mother, a lot of quiet time, and someone to call and check on her a few times a day. But the team of social workers wanted to have a helper there for hours at a time, and said the mother issue isn’t important now. They were directing every task and pressuring her to go down a different path. The calls and internet and occasional visits would have cost the agency less, but that’s just not “what they do” so it was impossible. I think this kind of treatment is destructive because a person should build her life out of the steps that are the most relevant at the time, and it is that process of moving through life from the heart that gives us more strength and self awareness than just skills training or following someone else’s direction.
Consider the whole economy is a way for allistic people to get what they need from other people; no one graduates and becomes “independent,” so there is no reason why we shouldn’t also have a slice of the economy that supports us in an ongoing way throughout life. It should not be a goal that we graduate from supports.
The industry mindset is to get “better” at “treating” “autism” with “best practices” and “evidence,” all of which kind of thinking commodifies their product into a less creative endeavor, we become the livestock that the practices are applied to uniformly and suddenly there is no reverence for the soul and the spiritual journey. (As an aside, when livestock practices are practiced on animals, I can only assume the same thing happens to them.) So I just don’t feel it is about accumulating evidence supporting the “best way” to do things, and that’s why the original question is suspect.
So if there is a system to meeting people’s needs, it has to be about specificity. I would want to access help that is about growing into my full beauty as the autistic person I am, not just mitigating my failures and being at a remedial level in life. Whether I was getting support or helping others, I’d be excited about finding a creative way to meet the specific needs the person one at a time, without the baggage of assuming what autistic people need.
A really obvious starting point for all this is to hire autistic people to work in the service agencies, tasked with that one-on-one creativity of finding solutions. That would at least make the agencies more accessible to the people they are supposed to serve. Another level would be running the service agencies ourselves. A third level is linking up our time and needs among each other in an accessible market, outside of government.