TPGA is observing Autism Acceptance Month by featuring accounts from autistic people about the differences accommodations (or lack thereof) make in their lives. Today’s story is from Mandy Klein, about how it feels when one’s ability to function fluctuates, but is not recognized or accommodated.
I am autistic, with the old label of Asperger’s, if that makes any
difference — though it shouldn’t. Speaking to communicate is not
something I am good at. When my anxiety is bad and/or I am in public —
especially in a group — my speaking ability is pretty much zero.
I had a most horrible experience in a group specifically for autistic people to learn mindfulness. It was at an agency that is “aware” of autism, as they are an agency that specifically provides services to autistics. Are they an agency that is accepting of autistics? Not so much.
The agency once had an autistic adult advisory committee, of which I was a member, but there is supposedly nothing for us to help with right now (how about consulting on groups?!). There is the usual program segregation, now based on the new DSM ‘levels,’ which, like the former high functioning/Asperger’s, low functioning labels means nothing.
|[image description: Text in rainbow hues on a black
background, reading “Nothing About Us Without Us”]
This group was advertised as being for ASD Level 1. Level 1 means minimal support according to the DSM, but that doesn’t really tell you much. I know that usually in the case of these groups, it means autistics who can speak and need minimal support, so I really shouldn’t have signed up. I actually need quite a bit more support than I get (which is pretty well none), although I fake my way through life — which is why my anxiety is so bad. After I had a bad experience with a psychologist who dumped me because I couldn’t do mindfulness, I agreed to try again, hence why I joined the group.
The group was not autism friendly at all. It was not in the expected place, first of all. We were told it was in one part of the building, when it was actually in a different part. Fine. I could deal with that, since I was used to the other part for parent support group.
I got there and the leader wasn’t there, so I didn’t know where to go. I waited outside the rooms because I wasn’t sure which one we were in, until the leader finally arrived. We went into the usual parent support group room. The tables were pushed back, and a circle of chairs was being set up. I can’t sit like in a chair circle if at all possible; I feel trapped. I also have low muscle tone and Ehlers-Danlos Syndrome so having a table to lean on is helpful for my body and my anxiety. We also have the chairs set up differently for support group, and as I don’t sit in that room like that normally, that too was stressful.
My anxiety started getting much worse (I had already taken valium before I went) and all I could do was stand at the end of the first table, frozen. I was able to get a stim toy out, to help a little. My feet hurt so it was not ideal, but I couldn’t move. I didn’t know what to do, except that I knew I couldn’t sit in a circle. A circle is too close and not safe-feeling. There is no escape.
There were only four of us in the room at this point. We were told to introduce ourselves and list some interests. No mention of alternative communication methods, because we were Level 1 so they assumed we could talk, and didn’t need that kind of support (sarcasm). But I was still frozen in my spot, and couldn’t talk, either.
I guess the leader figured this was the way I usually did things, because my issue seemed to be ignored. I have no idea what she was thinking. And not because of the myth that “autistics have no theory of mind” — I’m sure she had no idea what I was thinking either. It really does work both ways! This where a support person would have come in handy, but they are not usually allowed in groups, especially a Level 1 group. I was having an anxiety attack to begin with, now I was almost at the panic attack stage.
To make matters worse, then there was a fire drill. I slowly moved out. I don’t think I ended up wherever the meeting place was, but no one said anything. When it was time to go back in, I seriously considered not going. I entered last, after the others, and my autism consultant pulled out a table so I could sit at it with her. Two more people joined late.
The first part of the group was consultation time for anything we needed help with. I already have a consultant so it’s not like I’m going to bring up issues that are ongoing and I need lots of help with.
The second part of the group gets into the mindfulness teaching. Another leader from another agency, one which has never been any help to me in the past, came in. Introductions were done again. It was my turn and I couldn’t say anything — as though I would suddenly be able to talk with even more people in the room, and just getting over a fire drill. I felt and probably looked absurd, but what could I do. I didn’t feel like I belonged, and did not feel like I was wanted there.
I just don’t seem to fit in, even when other people are autistic.
The new instructor decided we would learn to be mindful with food. There was no mention on the registration to list food allergies etc., and I would never have thought of food being there. She asked people about allergies and of course, I just sat there until she specifically asked if I did. I nodded my head yes, because even though I don’t have allergies, I do have celiac disease and intolerances. Obviously, I couldn’t explain all of that.
She placed an almond in front of us. Technically, almonds are safe, but most nut companies contaminate them with wheat, and also they were from a bulk place — another source of contamination. All I did was look at mine, no touching, tasting, or smelling. The way she talked about experiencing it made it sound like we were in kindergarten. It was horrible, but eventually ended.
I left feeling very upset. It was an awful experience and I will not go back.
I did not feel safe or accepted. I didn’t not feel welcome in the group. I was offered no help, but I guess that is not what is meant to happen in the group, anyhow. I would think if someone was having a problem, you would try a little at least to help. Maybe I did not look distressed — I certainly felt it, though. I also felt like I didn’t belong.
Functioning levels don’t work and never have. In that place, I was not accepted at the place where I was — needing to be offered the option of alternative communication, and maybe even someone with me to feel safe. I was not actually a ‘Level 1’ autistic. I did not make the grade.
People need to be accepted for doing what they are capable of at the moment. I was not aware that I would have to speak. It was not in the requirements: those just said Level 1’ autistic. I could have been offered alternatives when my issue was noticed, but I guess it wasn’t. It would have been logical to offer alternatives since it is an autism agency, but people are so focused on “awareness” and functioning labels that the individual is forgotten about.
No matter whether we speak or use AAC full time, need little or full support, we autistics all have the same diagnosis, and will have varying abilities on any given day at any given time. I was up at 5:30am that morning to take my daughter to an EEG and then hurried to get to the group, so my functioning ability had already been dropping. If you then put me in an unknown situation, you get a nonspeaking, barely functioning autistic person.
Functioning labels/levels are unrealistic and expect too little or too much of us. Ask us what we need beforehand, and be accepting of what our abilities are at that time, and that they may change. I was at the point in parent support group that I could state my name and daughter’s age. I fear I may not even be able to do that now after the experience I had.
This is the trouble with awareness. Sure, the agency was aware of my autism, but how did that help me, other than I got into the group? Accepting my autism would have involved including me and helping me to be comfortable in a very uncomfortable place.