Diagnosis: What if you can't rely on a parent's input?

[Naturalist]

My therapist thinks I would benefit from a formal diagnosis, but I have a concern which he is unsure how to address: I am curious to know how to get a formal diagnosis if you can't rely on a parent's input. Surely there are adults who no longer have parents living, or anyone who recalls their upbringing vividly. Are they out of luck when it comes to diagnosis?

This is not my case but I have a father who does not recall many things after suffering a mild stroke, and a mother who routinely fabricates responses based on her own agenda or what she thinks others want to hear, rather than what really occurred. If she feels like complaining about me, she might be more honest; but if she decides she has a chance to "prove" that I'm normal and should get my act together and "grow up", she will sabotage my attempts at diagnosis. I can't rely on either parent for accurate input on a diagnostics questionnaire. I don't have other adult relatives who know me well enough to stand in their stead.

My adult sisters also have agendas: they say that nothing was ever as bad as I made it out to be, and my child-psychologist sister says I can't have Asperger's because (as she told me) "those kids are REALLY messed-up".

Am I screwed out of a diagnosis because of my dysfunctional relatives? Or are there other options? I am in the US, by the way.

 

[Ylva]

my child-psychologist sister says I can't have Asperger's because (as she told me) "those kids are REALLY messed-up".

Is that her professional assessment?

Not to mention that you're not a "kid", I don't know how long you can go to a child psychologist, but you can't be a child per se.

Your family remembers different things because of they didn't see the same things as important. Even your mom probably convinces herself that she remembers something else each time. Mine does that, and I don't think she's lying. It's a really interesting plot point in Nineteen Eighty-Four…

If you warn your psychologist, and he is good at his job, he can probably figure out the right questions to ask to get the truth. Maybe he'll even diagnose your mom with histrionic personality disorder while he's at it.

 

[dragonwolf]

While it can help if you consider your parent(s)' responses trustworthy, it shouldn't be required for an adult diagnosis. I was diagnosed without any input from any of my family.

The diagnostic process that I went through was as follows:

I got the Autism questionnaire (yes, the same one you can find online, though the "official" one had more questions) that I had to fill out on my own. I think I had another questionnaire, too, but I don't remember offhand.
Then, I had in-person evaluation done. It involved a number of things, including putting blocks in a pattern shown on a picture, creating a story based on a series of pictures, and describing certain things on an image with a whole bunch of stuff going on with it. The doctor might have also asked other questions, I don't entirely remember (I remember things I see better than most other things). That took something like 2 hours.
After that, they assessed the evaluation and doctor's notes, and I came in for a follow-up to go over the results. My results included an IQ score and ratings of strengths/weaknesses and where I fell in various areas on the diagnostic scale.

 

[On the Inside]

I was assessed without any input from family members besides my partner (in Minnesota). Both parents died when I was in my teens/twenties, and my sisters are much older than I, so weren't really around much during my childhood/teen years. I didn't really want them involved anyways.

My assessment was much like Dragonwolf described, though it was about 6 hours over two days, two weeks apart with two different doctors. They did say that parent/sibling perspective can be valuable, but not necessary.

 

[Naturalist]

Thank you everyone! This makes me feel much better about setting up the appointment for the diagnostics.

The second part of the assessment you mention sounds like a cognitive abilities assessment I did in college when I needed a waiver for accommodations based on a learning disability. The assessor at the time marked me down as ADHD, but there were lots of discrepancies, such as the fact that the tests never indicated impulsivity in my thinking process--quite the opposite, actually. But all the test results aligned perfectly with the description in the cognitive abilities chapter of Tony Attwood's "Complete Guide to Asperger's Syndrome". Which was a red flag to my current therapist that I might have Asperger's.

I wonder if I would have to redo that part of the assessment, or just the portions I may not have had on the first round? It would be nice if I didn't have to pay for that again--it was quite expensive.

 

[Naturalist]

Just an update: I happened to meet another local woman this week who has Aspergers (she is helping with the support group we are setting up for students at my college) and she put me in touch with a professional who diagnoses adults! So I called, and I have an appointment for Dec. 3 for the first part of my formal assessment!! I could run circles around my yard, I am so happy!

It has been so hard not having the formal evaluation and thus no way of accessing adult support, even informal support groups (the ones nearby seem to require that members be officially diagnosed). I am looking forward hopefully to an end of this frustration!

 

[metalminx24]

So pleased for you ☺