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Welcome to a blog written by an autistic adult woman in her late 30's using words and images to advocate acceptance as well as awareness of those with life-limiting sensory processing disorder and resulting social and behavioral challenges.Thank you for visiting.

Sunday, November 6, 2016

No support for me in support groups

 In 2007, my mom, aunt and I went to an autism "support" group. I don't remember how I found out about the group, but I had asked via e-mail if there was anything for adults. The group leader said no (of course), but that they might consider starting an adult group.
This was a group run by parents of autistic kids. Pro Autism Speaks. They were the main ones present at the meetings. There was only 1 other autistic adult who had mild intellectual disability and didn't come very often. Not long after my query, I was contacted to say that they would put one on the schedule and was e-mailed a copy.
I was excited. An outlet for me. Resources and sympathy available for my 67-year-old mom.
My mom said she had a bad vibe from the first meeting. I didn't see it, but by the 4th time it became clear: they were a clique, and if you thought thoughts apart from the clique then they hurt you.
When my mother voiced her opposing opinion of Autism Speaks and Jenny McCarthy and I expressed my concern over a coming speaker via e-mail, they e-mailed me in return to say they'd been talking about me among themselves.
They told me how angry they were and had suggested I never bring it up again.
These are adults who have kids on the spectrum. How would they feel if someone treated their kids the way they treated me? I use the present tense as autism is a lifelong condition. We may learn how to manage some things better than we did as kids, but we still have it.
Speaking that  kind of truth to power turned them against us. Anyone who allied with them (NISRA and Kennedy Krieger Institute) cut off all contact with me. My input was no longer a priority.
I still mailed all the pictures I took-voluntarily- (and my mom paid for) of a group gathering to them. I do admit the rejection hit me so hard that I called their office immediately after reading the e-mail and left a nasty message on their answering machine. I was 28 then. I have an average IQ, but my emotional reasoning was poorer than it is now-and it still isn't very good.
I respond twice as harsh as a way of protecting myself. If I act loud and scary enough, then the bully will stop hurting me and leave me alone. Unfortunately, this theory has led to trouble with the law  and it only works occasionally.
This was another nightmare to add to my list of autism related nightmares: Being shamed for being different from the different (I assume that having a kid with special needs puts a parent into a lifestyle different from those without a special needs kid. I always hear parents who have special needs kids say how sensitive they become in ways they wouldn't if they hadn't had a special needs kid. That wasn't the case with me and this group.
I experienced similar results with an online support group run by autistic adults-Wrong Planet and another run by Autism Speaks (I was naive of them back then). Don't think like the majority, get shamed. Get nasty things said to you until you are too humiliated to continue. Nobody coming to your defense and nobody to reason with.
This is why I don't do support groups. It backfires on me every time.
I have never experienced what a community is-acceptance, inclusion, working together toward something bigger than one person alone. At least this is what I have observed in movies and read about in books (actually listen to on audio).
I've spent over 3.5 decades being ejected from or tortured by it.
I will say that the USA has a problem with agreeing to disagree respectfully. I hear about this all the time in the news or on Podcasts. One theory is that people can't separate their emotions from others opinions. If someone disapproves of their opinion, they take it to mean the person disapproves of them. Personally. They can't handle it, so they retaliate. I rest my case.
Not to be sarcastic, but aren't NT people supposed to know this? Maybe it is actually so based in logic only autistic people can get it. I never thought anyone disliked me for my voicing a dissenting opinion-and then I went to school and learned otherwise.
This is also why I don't enable commenting. This isn't a social platform.Social platforms for me are choppy seas where sharks circle. It is to raise awareness about one person with autism-their struggles with seemingly unique twists and turns.