So, I showed up with my documentation about Aspergers…

Stack of papers with bent edges protruding from the pile
I did my research and compiled my results… A lot of good it did me

It was summer/fall of 2008. I had been 97.72% sure I was on the autism spectrum for over 10 years. I’d been urged by my coworkers to take some Aspie quizzes in February of 1998, because they told me it “would explain a lot”.

I took the quizzes. In English and German. Results were the same — I’m on the spectrum.

I went on Wrong Planet. Determined that it was full of angry young white men, and I didn’t really feel like I had that much in common with people there. I also didn’t much care for the idea of being autistic (however “mild” my case might be). I lived in a high-tech world filled with Aspies, and I decided it was just my life, just my way, and I didn’t need a whole lot of help or support with it.

Fast forward to 2008. My partner had some serious health issues. So did I. In the process of dealing with doctors and changes to my schedule and the uncertainties of, well, everything, I started to meltdown more frequently (weekly, sometimes daily, instead of monthly). I couldn’t piece thoughts together. I needed help figuring things out. My brain wasn’t working. My whole system was on high alert, and I was at a loss for how to do much of anything. I had no friends to rely on. I didn’t know how to talk to doctors or other healthcare providers about anything but the most dire and most obvious of situations.

I was melting down. I was shutting down. I was in need of real help.

One of the benefits of having my life turned upside-down, was that I had a lot more time to myself. I went to working half-time, while I helped my partner recover. And in my extra time, I did a hell of a lot of research. Diabetes. Cognitive processing. Neurology. Resilience. Stress inoculation. Stress hardiness training. And Aspergers.

On top of this, people around me started to mention autism and Aspergers to me. Either co-workers at my new job, or total strangers who just met an dinteracted with me for a few minutes.

My co-workers would talk about Aspergers… “Do we know anyone with Aspergers?” wink-wink, nudge-nudge… and they’d look at me for a few moments… as though waiting for me to speak. “What?” I’d say, and they’d go back to their conversation with more shared glances and smiles… and I’d go back to my programming work.

Total strangers would ask me if I knew about Temple Grandin. No, I didn’t. “You should read her books! She’s a high-functioning autistic woman!” Why would I want to do that? Temple Grandin? What sort of name was that?

It happened a bunch of times in 2008, and my readings about Aspergers — with ten years of additional research, since I’d last immersed myself in that as a special interest — brought up a whole heckuva lot of parallels with my life. The difficulties I was having could actually be explained by something! Wonder of wonders! And here I was thinking I was just hopelessly lost and confused and worthless. Au contraire! I simply wasn’t leveraging my God-given abilities as well as I could.

At the time, I was seeing two different counselor types — a psychotherapist, to help me deal with my emotional overload, and a rehab counselor who was helping me with the logistics of executive functioning problems. I had also just found a new doctor, who seemed a hell of a lot more promising than the last mousy, mindless one I’d seen, who’d told me that clearly observable phenomenon — like discharge from certain infections — didn’t exist. And a good friend of ours (who was a psychotherapist by trade) had turned into an even better friend, providing much-needed support, when we were both on the mend from some pretty hair-raising medical emergencies.

I was in a place where I finally felt like I was getting help from good-hearted people with expertise and experience.

And best of all, I’d found great info about Aspergers that I felt could really help explain things for them, so they could help me even more.

I wanted to make sure, though. So, I went through the checklists I’d found, made notes, highlighted things I felt were particularly pertinent to me. I did a retrospective on my family and discovered a whole truckload of Aspie-type behaviors and tendencies in my parents, siblings, grandparents, cousins, aunts, and uncles. I ended up with a sheaf of papers discussing the Aspergers connections and evidence in what I considered a fair amount of depth.

Research in hand, I forayed into these relationships and disclosed what I thought was the case. It did not go anything like I’d expected.

According to the psychotherapist (who was living with a man who acted just like he was lifted from a Tony Attwood description), I couldn’t possibly be an Aspie. Her boyfriend’s sister was a real Aspie, and she’d interacted with her at family dinners many a time. I didn’t act anything like her. I wasn’t impaired enough to be anywhere hear the autism spectrum. That therapist’s declaration was so dismissive — almost derisive — it took me totally by surprise. Here, I’d showed up with more than ample evidence (I gave her a copy), in good faith, with the best of intentions, wanting only to get to the real bottom of my issues, understanding the whole of my interconnected system in productive and insight-provoking ways. But she treated me like a foolish, attention-seeking, liberty-taking upstart who spent too much time on the internet.

According to the executive function counselor (who had worked with kids on the spectrum before), I was suffering from “medical student syndrome”. Again, it was obvious I had too much time on my hands. I was spending too much time on Wikipedia, and I was empathizing too much with other people’s “real” problems, to take the focus off my own relatively minor issues. I was too social, he said. I had empathy, he said. I made eye contact. He asked me pointedly if I could figure out what was going on in other people’s minds, and the answer was “no”. But I was so upset and intimidated, I just nodded mutely, wanting to get the painful conversation over with. “You see?” he said triumphantly. “You don’t have Aspergers!”

My doctor was the only one who didn’t treat me like a total idiot and tell me I was wrong. But she really just indulged me. She didn’t contradict me. She was just happy to see that I wasn’t acting so depressed anymore — she’d thought I might be clinically depressed, when I’d first met her. She didn’t dismiss me or tell me I was wrong — she just looked at me oddly… and humored me. I didn’t sense a recognition or openness with her, so with her, I let it drop, as well. I’d disclosed my belief. As long as she didn’t belittle me, I could live with her skepticism.

As for our friend, when I told her excitedly — in a breathless rush of information about my family, my experiences, my beliefs, and the evidence I’d found — she nodded tentatively, then shook her head. “No,” she said. It wasn’t possible. She worked at an engineering school, counseling uber-geeks of the uber-geeks, and I wasn’t nearly as impaired as they were. She knew “all about” Aspergers, and I didn’t fit the profile. When I pressed her with additional details, she shrugged, and then held up a thumb and forefinger about 1 cm apart. “Maybe just a little,” she said, and I let it go at that.

So, I was 0 for 4 — well, maybe .5 for 4. But certainly, the three individuals I’d hoped to get some support from had shot me down without more than a moment’s consideration. And it was crushing. Just crushing. I couldn’t bring it up anymore, I was so upset. I put away my collected research and turned my attention to the day- to-day business of getting our life back on track. Pursuing it further for any help was about as pointless as pointless could be.

But I still managed to get some help from one of them. The executive function counselor I was seeing, I managed to steer in directions where he could help me with my Aspie issues — so long as I never called them that. He helped me a lot, though it was in ways he probably never guessed. Decision making. Planning. Follow-through. How to have conversations with people. How to ask for clarification. The whole time we were working together (about 8 years), he would look at me sometimes like he didn’t know why I was there. I seemed so… normal. And once he told me that he thought I just met with him each week because I was “lonely”.

Au contraire, dipshit Mr. Rehab Man. I need more help than you will ever know, because I will never tell you. Because  you don’t believe me. You never have, and you probably never will.

As for that friend, well, she turned out to be a pain in the ass, in the end, and we haven’t seen much of her in the past few years. She was helpful in ways, and hurtful in others. I’m ambivalent about her, but my partner still considers her a friend. And we’re both still grateful for the help she gave us, when no one else could or would.

I’m currently seeing another executive function rehab person, taking the same approach as before — dealing with my issues as garden-variety issues, rather than Aspie issues. It seems to be working so far, except that this new counselor is really into “getting in touch with your feelings” which is SO ANNOYING to me. She’s keen on “emotional release” stuff, which I have to fend off repeatedly, to avoid a meltdown. I’m probably not going to bother dealing with her about the Aspie stuff, because although she does do autism assessments for children, when it comes to adult women, she doesn’t seem too clued in.

If she were, she totally would have mentioned it to me, by now. I don’t mask with her. I act more like my Aspie self with her, than I did with the last one. But so far, not a peep about my tics and stims and other strange behaviors that draw looks of dismay from the neurotypicals in my life.

I think the page is going to turn in a few months, however. I have a tentative appointment to see a qualified therapist who’s certified in my state to do AS assessments and diagnose. For government support purposes, I’ll have to get a medical/psychiatric diagnosis, but that’s the last thing I want, right now. I just want an official DX that works like a key in the lock to the gate that encircles the people who specialize in this topic. I can’t get through to them, unless I unlock the gate. And I need an official Aspergers / AS diagnosis to get there.

So, with any luck, by the end of September I’ll have that. We’ll see.

We’ll see.

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11 thoughts on “So, I showed up with my documentation about Aspergers…

  1. You may want to rethink getting an official diagnosis if you are in the US. There is a bill in Congress right now that is about suspending medical privacy rights for people with mental illness, including autism. This means that anyone related to you can request, AND GET, personal, intimate details of your condition and treatment, and possibly even influence the treatment you get. Some autism groups think this is just wonderful.

    Liked by 2 people

    1. VisualVox

      Thanks for the tip! I plan to get a non medical DX and keep away from insurance. So I am being careful. Always. But you’re right – I do need to consider it carefully.

      Like

  2. Medical professionals should be willing to accept that patients understand themselves better than they do, after all we’re the ones living our lives 24/7 . I sought help in 1999 because of executive functioning / social issues. At the time I was looking down the route of ADHD/dyspraxia but I was told I had a personality disorder. I believed them and gave up then. When I came across Asperger’s, I didn’t bother to mention it because of my previous experience of being dismissed. I was very lucky because my psychiatrist recognised it in me anyway and I got diagnosed. Anyway good luck, hope you’re listened to this time. You’ve certainly done your research.

    Where do you find an EF counsellor? I wonder if we have them in the UK.

    Liked by 1 person

    1. VisualVox

      Thanks – yeah, the process is still ongoing… and now I’m a lot less sure if it actually happening, than I was 24 hours ago.

      I found someone who works with ADHD and other related issues — more of a neuropsychologist, than a psychologist. They often do work just assessing folks for things like autism and ADHD and post-concussion syndrome, but sometimes they’ll do rehab, as well. I got lucky. I searched high and low for them for nearly a year, and it was a total fluke that I connected with them via someone who had a good experience with the person I saw.

      Good luck – it can take some creativity and a whole lot of persistence. But then, that’s what we sometimes do best, right?

      Liked by 1 person

      1. Thank you.. not much help from Google – everything is in the States – so I will have to get creative! ADHD organisations seem like a good place to start. Hope your plans get back on track.

        Liked by 1 person

  3. Pingback: Protecting us from the hazards of #autism diagnosis – Under Your Radar

  4. Pingback: Prepping for my Aspergers assessment tonight – Under Your Radar

  5. Pingback: Is un-diagnosed #autism why my sense of humor is so dark and (let’s admit it) twisted? – Under Your Radar

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