AMA Part 1: How Do You Know It’s Time to Get Diagnosed?

Taking a leaf from a friend’s book, I offered a blog AMA on Facebook a few days ago.  I’ll be blogging the questions and their answers over the next several days, in no particular order.

Here’s part one:

How do you take the final steps and know?

How can you go from thinking: “I’m an NT person with a few quirks.” To: “So many things I do/feel/think match things mentioned on the blogs of Autistic people. Maybe I am too?”

To: “I’m sure enough that I should ask for a professional diagnosis”?

Unhelpful but true answer: This process is as different as the people who go through it, so no one can tell you how you should do it.

Marginally more helpful and also true answer: If you can avoid it, don’t do it like I did.

I did it after hitting autistic burnout – spending a few weeks in the hospital and all.  In the many psychiatric appointments and search for answers that followed, I went from “maybe I am too” to “asking for a professional diagnosis” in the span of about two weeks.

Getting a professional diagnosis is hard and weird, even when you have the extraordinary good luck to have practitioners who (a) already had “autism” in their notes for you, (b) are receptive to the research you’ve already done, and (c) are totally cool with scheduling you for whatever testing they deem necessary.

Hard because there’s a lot of testing, and of trying to explain things about yourself in vocabulary that either doesn’t exist, is borrowed from vocabulary used to describe non-autistic people, or is pathologizing as fuck so you have to talk down about yourself no matter how you actually feel.  Weird because the tests are so obviously written from a non-autistic perspective, so you have to see yourself through non-autistic eyes the entire time even though the whole point, for you, is to see the autistic you.

Aspietests.org has several inventories your docs might use or might use different versions of.  (For instance, the site has the RAADS-R, which is one of the things I was given during my diagnosing process.)  The tests all suffer from that “written from a non-autistic perspective” problem, but they might give you a better sense of “is this really me?” and/or help you decide whether pursuing a paper diagnosis is what you want.

(For instance, I brought up the diagnosis to my psychiatrist after taking the 14-question short-version RAADS online.  I cried through the entire thing, because it was the first time in my life anyone had asked questions that were actually about what went on in my head, instead of the non-autistic version of those things.)

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3 thoughts on “AMA Part 1: How Do You Know It’s Time to Get Diagnosed?

  1. i consistently score high on the RAADS (total score 174). i don’t see an advantage to me to get formally tested at this time, but if i needed this for accommodations for school, i would. i think i told you the best thing i read was the AspienWomen book, because it really was a first person narrative of how we go unseen.

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  2. The problem I have run into, which is the reason I have not pursued a professional diagnosis, is that there aren’t really adult diagnostic services in my area. The one time I tried to track down the process, I ran into the assumption that since I could make the phone call and ask about the process, I must not need the diagnosis.

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