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.
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| photo says 'nothing about us without us' |
#autismacceptancedayandmonth2016
