Friday, 1 April 2016

Autism Acceptance Month- 2nd post. Not Accepted!

This is my second post for Autism Acceptance Month.  

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 specifically which provides services to autistics.  Are they an agency which is accepting of autistics?  Not so much.  There was once an autistic adult advisory committee of which I was a member but there is supposedly nothing for us to help with right no (how about consulting on groups?!).  There is the usual program segregation, now based on the new DSM 'levels', which like the former high functioning/aspergers, low functioning labels means nothing.  

I am autistic (with the old label of aspergers, if that makes any difference-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.  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 (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 the reason why I joined the group.  

It was not autism friendly at all.  It was not in the expected place, first of all.  I knew not to expect detailed instructions on the room etc. based on past experiences--I need to make sure to request that in the future.  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 and then she came.  Next, we went into the usual parent support group room and the tables were pushed back and a circle of chairs was being set up.  I can’t sit like that if at all possible.  I feel trapped and I don’t sit in that room like that normally.  We have it set up differently for support group.  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.  

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 4 of us in the room at this point.  We were told to introduce ourselves and list some interests.  No mention of alternative communication forms (You’re a ‘level 1’ you can talk.  You don’t need that kind of support (sarcasm)).  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 and my issue seemed to be ignored.  I have no idea what she was thinking.  No, that is not about 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 those are not usually allowed in groups, especially a ‘level 1’ group.  I went into the group with an anxiety attack to begin with and now I was almost at panic attack stage.

To make matters worse, there was a fire drill and I slowly moved out.  I don’t think I was wherever the meeting place was, but no one said anything.  When it was time to go 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 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.  It was like they figured 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 stupid, 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 the others 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, 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 first of all, most nut companies contaminate them with wheat and secondly 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 finally ended.  

I left very upset.  It was a horrible 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 anyway.  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 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 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 (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 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.  My functioning ability was already dropping.  Put me in an unknown situation and you get a nonspeaking, barely functioning autistic person.  I was drained when I left.  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 as they may change.  I was at the point in parent support group that I could state my name and daughter’s age.  I fear that I may not even be able to do that now after the experience I had.  

This is the trouble with awareness.  Sure, they were aware of my autism, but how did that help me, other than I could get into the group.  Accepting my autism, would have involved including me and helping me to be comfortable in a very uncomfortable place.
photo says 'nothing about us without us'

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