Age of diagnosis survey

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I have no clue how to get diagnosis as an adult all the "doctors" in my area only evaluate children.

I'm sorry that I do not remember what portion of the test it was in but I was a little frustrated in the section that asked about how I felt during childhood. Things changed over time. I was happy enough until about age 10 but less so after that. I wasn't sure how to answer the questions about childhood.

I'll admit some curiosity on my score on the Autism Spectrum Quotient test. I didn't think to make provision for plugging the answers in in another version of the AQ test to see whether my score has drifted much.

And those EYES. Weird. Often I just took my best guess. Sometimes I was sort of sure of the answer but it wasn't one of the answers offered. I would've loved to see how I did on that.

I did it, hope my information is useful, I have some other conditions that may affect my answers and wasn’t really sure how to answer a few (I’m recovering from lymphoma, and some of the symptoms are the same as some anxiety symptoms, and I wasn’t really sure how to answer if, say, I never had any desire for sex to lose and have never slept decently in my life).

I was diagnosed with autism in 1964 at age 3. The person who diagnosed me is probably deceased.

My mother doesn’t remember the exact person who diagnosed me.

They’ve had “infantile autism” since the 1940s. I’ve seen this diagnosis in case studies from that time.

I went to elementary school before there were IEPs.

I was also diagnosed with a few debunked diagnoses (e.g., “brain-damaged”).

The DSM-1 was published in 1952.

Most of the childhood ones are "it depends" for me. It's very dangerous to deal in averages when talking about behaviours and emotions. If I score a 5 is that because I was always a 5, or because I spent half my time at 1 and the other half at 10? My most stable characteristic is my instability. It's got worse with age but I think it was there as a child, too.

Not being able to undo some of the answers is a PITA. For example with a couple of the eye questions I changed my mind and decided I really didn't know, but having clicked something there's then no way of unclicking all answers. It forces you to choose something even when you have absolutely no idea, so the answer given is actually random. That's going to mess up your results.

It's the same with some of the later questions too.

"Can you find words to explain your emotions?". Yeah, I can do that really well, 3 months down the line when I've worked out how I was feeling 3 months before. Ask me at the time, no chance of a meaningful answer. Not because I'm useless with words but because I genuinely don't have any awareness as to how I'm feeling, most of the time. Can't express something I don't know.

The numbers game I can do by saying the words in my head, which apparently isn't against the rules. So I say them again and again until the answer screen comes up. It's a workaround and it's hard work, what is actually being assessed here?

The last table where the column titles disappear as you work down the page is massively frustrating too. Needs an Excel-style fixed header when we scroll. Again it assumes consistency when there is none. How hard do you try and fit in? Depends who I'm dealing with, what the topic is, whether it's constructive and useful or simply time-wasting, whether I like the people involved, how big a group it is, how much pressure I'm under, how stressed I am, what the history is, what else is going on in my life, to what extent my opinion is valued, whether the assumptions are good, whether we're repeating old news or discussing new information etc. etc. etc.

I'm not convinced this really assesses how I've changed since my assessment. It compares how I answered the questions on the day of my assessment with how I answered them today. But as many of them are highly variable / "it depends" or non applicable / guesswork, chances are you'd get a different set of results every single day inbetween, too. Especially as I wouldn't remember how I'd answered the day before. It's a couple of flashgun shots into the dark rather than a measure of the overall trend, which would require more information over time AND the ability to step back further to review it all.

Hi everyone, thanks for your comments. Forgive my clumsy replies, I'm still quite new here and haven't learnt how to do multiple quotes.

MalloryFluff - I appreciate getting a diagnosis is hard, esp. as an adult. Even when you find someone the waiting list can take years. If you're in the UK, your GP should be able to help.
Double Retired - Sorry you found that bit frustrating, it is a bit of a design flaw but don't worry if you didn't answer them or answered in whatever way you felt best. The AQ is a tricky one, I don't want to say too much for people who haven't taken the survey yet but many are surprised about how it's scored... Again, the eyes task is proving more controversial than I expected! It's available online, the validity might not be so good the second time around but as I can't give out individual scores, it will give you an idea.
dragonsanddemons - Thanks, the questionnaires are mostly existing ones as I didn't have the time to make new ones. They aren't all specifically for autistic people (even the ones that are have issues). I dream of a world where surveys have sensible options!
kraftiekortie - Feel free to put that you can't remember where you were diagnosed, it's perfectly understandable. The main thing is the age of diagnosis and I would really love some people who were diagnosed as children to participate.
Redd_Kross - You've raised some good points, as I've said to others these are standard existing scales and even adding a logical option like 'It depends' causes all sorts of problems. I can't really say too much but the numbers were a digit span task, if you google that you'll get an idea. Thanks for participating and sorry if you found it annoying.

I'll try to keep answering any questions but will be without decent internet for the next week or so. Also found out this morning that I didn't get the funding I was hoping for for next study so currently without spoons. Thanks again everyone.

Sorry you didn’t get the funding you sought. I hope you get it next time.

Thanks, kraftiekortie!

THe numbers sequence thing said the sequence would get longer, but I had just two 3-number sequences. Perhaps I didn't type them in correctly. I put a space between the numbers, and possibly it couldn't tell what I was typing and figured I couldn't do the task at all?