why I started this blog
Someone posted a link to Asperger Journeys on the autism board of my mental health support forum. I could have written pretty much everything in that blog myself with a few exceptions. I wrote this post first for my blog there. There’s some overlap with my previous post.
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In this post, the description of how females with Asperger’s gain social skills (starts about halfway down) resonates very strongly with me. I read every book I could find on social skills during high school and I have two masters’ degrees that involve the study of normal people.
Likewise in this post. When people say things that describe a reality completely out of sync with my own experiences, it takes on a life of its own; nothing means anything anymore and I’m endlessly caught between my reality and theirs, unable to resolve the conflicts.
These similarities are distressing to me for many reasons:
1. I have described major social-related problems to almost every mental health practitioner I’ve seen, and have gone to multiple therapists asking for help with those specifically. I’ve always described them as major issues that seriously impact my life. I’ve been ignored or gently refocused, and, when I finally started refusing to just drop the issue and insisting over and over like a socially-insensitive repetitive robot, been reassured that there was nothing wrong with me but (unjustified) anxiety.
2. Several friends and family members have told me that they think I have undiagnosed Asperger’s. If that were true, surely some of my mental health providers would have been willing to talk with me about social skills issues rather than assuring me they didn’t exist?
3. Online autism communities can be social minefields if you don’t get the rules right. Rules sometimes include things like stay out if you don’t have a diagnosis, don’t act like you know anything unless you’re speaking from personal experience of being autistic, and don’t stand up for anyone autistic you care about if you’re not (diagnosed) autistic yourself.
4. I would fit in very poorly to most online autism communities for being so pro-scientist, for valuing social niceties because they are important to many people, for thinking that autism spectrum disorders are disorders and not different ways of being, and for thinking that people with Asperger’s and high functioning autism really are very different from autistic people who are invisible because they do not have communication and/or are institutionalized.
5. I sympathize very much with parents who are raising autistic children.
6. I can hold conversations, make eye contact, and implement a variety of other social skills. It takes me a great deal of effort and concentration, but it’s something I can do. It’s largely for the other person’s benefit, and often results in them feeling an emotional connection with me that I don’t feel with them. Therapy replicates this. I think therapists think I’m making progress because I’m able to simulate this for them.
7. I don’t have problems picking up on what other people feel and think. My problem is that I pick them ALL up and I pick them all up consciously and it’s very hard for me to figure out which ones I’m supposed to respond to and how versus which ones I’m supposed to respond to but not acknowledge. I’ve run into some discussion of this, but it’s not the right kind of problem.
8. Sometimes it’s extremely effortful for me to manage conversations and sometimes it’s easy.
9. I feel socially required because of identity politics to insist that I cannot have Asperger’s because I do not have a diagnosis. It’s something I really want to talk about but the social-minefield social rules issue is very difficult for me to cope with.
10. After years of therapy, I don’t have any hope that anyone would either believe me or humor me or be willing to treat past experiences as indicative of future experiences. I go to therapy and ask for help and have my problems ignored or normalized, and every time that happens it’s worse. (Added to by my repeated attempts to get help for dealing with fallout from an abusive work relationship, which also results in being ignored or refocused or told that my problems are anxiety.)
11. I feel like I’m decompensating with respect to social stuff as though I were borrowing symptoms.
12. Many of the skills I’ve developed are unsustainable. They’re skills, but they’re the wrong ones. It’s like being a college who can sleep four hours a night during finals week and pull off straight A’s, and having the ability to do that taken as evidence that I can do that every night for the rest of my life. I don’t know how to back down. I don’t know how to negotiate workable compromises.
13. In grad school I got an ADD/math problems issues evaluation from students with disabilities services. I was told my problems were only weak spots, given the impression that I was wasting time and resources that would have been better spent on people with real problems, told that it was part of bipolar, and even though I said over and over that what I was looking for were resources that would help me deal with the problems I was having, all he would do was ask me what accommodations I wanted.
14. Every time something upsetting happens it’s worse than the last time because I have more and more previous bad experiences. This makes me look especially unreasonable.
15. I want to go to a specialist and be assessed after I finish up my current work assignment and move, but I worry that no diagnosis will mean no help.
