Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Hillary, Alyssa. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from http://yesthattoo.blogspot.com/post-specific-URL.

Thursday, April 11, 2013

Wait, What?

When I was nine, my school had me sent in for a neuropsych evaluation.
From then until my eventual diagnosis, the fact that this evaluation did not give me a diagnosis was the strongest argument anyone had that I was not, in fact, autistic. It was a meh argument at best, considering that there are papers written about the reasons that girls don't get diagnosed, but nothing based on how I actually act was going to hold anything resembling water, so that's what they used. Because even with those things, apparently I shouldn't have spoofed a neuropsych evaluation? (Yeah, no, it's totally possible to spoof a neuropsych eval by being female, verbal, and gifted, even now. When the person is trying to show their Autistic traits so they can get a diagnosis, and I was not.)
But.
Apparently.
I might not have even spoofed the person evaluating me.
They might have just decided not to write down the diagnosis anywhere.
I was talking to my mother about autism stuff, and, well, one of the things that came up was the evaluation I'd had when I was nine, with the school trying really hard to get me labeled with something, anything. They had been pushing for that for a while, too. Because they could tell something wasn't typical. (They were right, too. It's called being Autistic.)
And the person evaluating me knew that the school was pushing for a diagnosis, that I wasn't actually struggling in any of my classes. They picked up on the part where my mind works fast, and I think they noticed the pattern recognition. Two things that really stick out to me from my evaluation were the fact that they commented on my need to snack during the evaluation and one test where they asked me to use a key that matched each of ten symbols with a digit and to decode as much of the page as I could in a set amount of time. I started, trying to fill in all the "1"s. And they stopped me to tell me that I had to go in order. Which made no sense to me. I think I told them so.
But what is running through my mind now is what my mother told me.
The person who did my evaluation asked to talk to my mother afterwards. They told her that there were some "findings" they wanted to talk to her about, that they were not putting in the report they were sending to the school. And every finding that they mentioned to her? I wasn't the only one in the family to do it (Not shocking, since I'm not the first Autistic in the family. My aunt almost certainly was, my great-grandmother probably was, her sister almost certainly was, they aren't even the only ones.) Also, the ones that she specifically remembers line up with "this kid is autistic!" pretty well. Stims, generally. The fact that my motor skills had some (stated to be subclinical but considering that I know they left things out...) differences lines up too.
I won't say that the neuropsych person knew exactly what label it was that they were choosing not to give me because I don't know that, but I've talked to some people who did neuropsych stuff since I found this out.  Findings that they don't quite know what to do with go in the report, with further action suggested. Consultation with an expert suspected to be relevant, further testing in general, something. And that's not what happened. They talked to my mother about them, told her they were leaving some findings out of the report, and did so. I don't know what they knew or suspected, but that sounds like a conscious choice to keep me hidden.
Yes, I hid, but I may have had some help from a neuropsychologist who left some autistic traits out of a report when I was nine.

3 comments:

  1. I was actually evaluated when I was 2, by a speech-language pathologist, I believe, and I also wonder if I was deliberately not diagnosed, given that the basis on which my mother said the SLP told her I couldn't be autistic, holds no water at all. Is actually, in fact, in direct contradiction to the DSM-III diagnostic standards for autistic disorder. The diagnostician was either seriously incompetent, or was deliberately misconstruing information.

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  2. I was evaluated at 12 or 13. Truthfully, my NLD is an unofficial diagnosis given by a regular psychologist. When I went off to be evaluated by a neuropsych, she was MUCH more interested in my Tourette's (which we didn't know was Tourette's and somehow she didn't either). She also focused on my emotional issues-- she essentially blew off the fact that there was a substantial gap between my Nonverbal IQ and my Verbal IQ, and said I wasn't on the spectrum. We came away diagnosis free. I don't believe her evaluation was accurate. My years of struggling with nonverbal language were humiliating-- walking myself straight into jokes that could target me. Totally misunderstanding the intentions of others. Not making eye contact with waiters when they took my order. I pushed myself very hard to learn how to be less that way-- though that really isn't always a good thing in my eyes. In fact, I'm probably a less likely candidate for a diagnosis now than I was then because I have forced myself to be more NT. I'm glad you finally got a diagnosis, though it would have been better if you'd had that support when you were 9.

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  3. OMG YTT: I did the exact same thing on that key thing. All 5 times I was evaluated for Stuff. Because I have no working memory to speak of really.

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