More about my "Total Nightmare" evaluation

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(original thread: http://www.wrongplanet.net/postt227286.html )

Saw my own doctor for the first time since the so-called evaluation where after four hours of administering tests, the "doctor" told me I wasn't autistic because, for example, I could converse and interact, and had a sense of humor. "Obviously not autistic."

I described the tests/test elements.

My doctor said it was apparently an IQ test, not an evaluation for autism.

Wasn't that nice?

Look for someone who administers diagnosis via ADOS and ADI-R. These people are much more likely to be able to recognize autism despite the ability to interact and having a sense of humor.

I swear. Sometimes doctors can be as ignorant as the general population. And they should know better!

It's sad but true. I think it'd be embarrassing for a doctor to say, "You know I how know you're not autistic? Because you don't act like Rain Man."

One of the issues I see is that people are taught about autistic children, and mostly assumptions about autistic children based primarily on observation and often ignoring what autistic people actually have to say. So people come away with the notion that if you're autistic in a certain way at five or 10 years of age, you're like that your whole life. I had someone argue that I was not supposed to have sufficient theory of mind to have a sense of humor if I am on the autistic spectrum. When I gave him a link to an autistic stand up comic he said she wasn't really autistic.

And when I started telling people I was autistic they immediately compared me to children they knew and said I was not like them.

It's frustrating. As a child, my sense of people as people was not what it is now. But somehow the expectation is that it should be the same as it was then.

Sort of went off into a rant there.

Get this-

He left me a message saying he can't find my doctor's ID number so he can give her as the referral source for billing my insurance.

I can't in good conscience give him my doctor's contact info. Not after what he did and said.

Comments?

Wow. I'd get a second opinion if I were you.

I saw a clinical psychologist about three years ago and I mentioned that I thought I had Asperger's to him, he blew me off by saying "I don't think you have it". He proceeded to ask me a bunch of questions that involved my mental health and asked if I had any friends and asked me how my academics were. I got taken back to a room where he administered a verbal vocabulary test, a drawing test, and a block design test. It took about two and a half hours and he sent me on my merry way.

This psychologist told me he thought I had APD (avoidant personality disorder) and then denied ever telling me it. He also mentioned he didn't like labelling people. In the end, I was told I had a visual processing disorder when the actual "diagnosis" was nonverbal learning disability and I didn't find out about it until my vocational rehab caseworker showed me the evaluation.

Also, I suspected Asperger's because when I was a child I would always flap my hands, have conversations with my fingers, walk around in circles, run back and forth in my own little imaginary world and I would constantly wring my hands. Guess what? I still display those minus the walking around in circles , running back and forth, and the hand flapping. I still retreat into my little world, wring my hands, talk to myself and stare at my fingers while doing so. I also fidget and rock myself sideways every once in a while. I cannot verbalize my sentences properly sometimes or appropriately ask questions in a social setting. My interests are Harry Potter The Sims 3, 80's movies, Charmed, and certain music groups. I think I do possess more Aspie traits than NLD traits. The only NLD trait I have is my difficulty with math

The point is some doctors have no idea what they're talking about and I apologize for the long explanation in previous paragraphs.

I think there's a lot of variation in professionals' familiarity with how autistic traits can manifest in an adult. Some may be really old-school and would not consider anyone much less severely affected than Rain Man to be autistic. (And some may be of the political belief that autism is way overdiagnosed and never should have been applied to anyone more severe than Rain Man.) Others can see that adults who struggled a lot as a kid can develop very elaborate coping mechanisms, and so might recognize adults who present to the average person as pretty normal or just clever and quirky as being on the autistic spectrum. I've seen this range in professionals who have worked with my ex-boyfriend. One professional (not really an Asperger specialist) totally dismissed the idea that he was autistic, because all his Asperger adult patients were much less well-adjusted than my ex was. Another, a therapist with a special-ed training background who worked a lot with autistic adults like my ex, saw him as clearly on the spectrum and even (retroactively) saw traits in me. (My current self-assessment is that I'm most likely a BAP adult who would have qualified for an SCD diagnosis but probably not DSM-5 ASD as a child, had those diagnoses existed.)

Probably more important than the label itself when seeking out help is whether that professional can see your specific quirks and issues and how they might affect your life, and the strengths and limitations of the coping mechanisms you might have developed by your age. It probably matters less whether you have Asperger's or NLD or both, than whether whoever's working with you understands you and can help you refine your coping mechanisms. I think it's like Temple Grandin's view on how autism should be treated: work with the individual's "symptoms" or issues, not with the label as a whole. Because every person with autistic traits is unique in terms of their sensory, social, and information-processing style and how all that affects their daily life.