Self-diagnosis survey

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Hi everyone,
A few months ago I posted a survey about age of autism diagnosis as part of my research. A huge thanks to everyone who took part, the results are being analysed and I'll let you know what they say as soon as I know. During this study it became clear that I also need to hear from those autistic people who either haven't been able to get diagnoses or don't want or need an official diagnosis.

So it's my great pleasure to present to you Study 2. The self-diagnosed edition. Thanks to Cornflake for permission.

As with the previous survey participants need to be 18 or over and unlike the previous survey this is just for those without autism diagnoses. It's the same as the previous survey so that I can use both sets of data in the same analysis but with obvious differences such as instead of age of diagnosis it asks age you first suspected autism etc... It might take between 30 and 40 minutes but you can leave and come back to it within 2 weeks.

If you have any questions please feel free to post on here or PM me or my email address is on the front page of the survey if you'd prefer. Thanks in advance.
https://kentpsych.eu.qualtrics.com/jfe/form/SV_esRt6jEirjwXV6C

Last edited by Cornflake on 31 Mar 2021, 6:50 pm, edited 1 time in total.: Just to note that I did approve this survey.

On the "remember the numbers" task, I got distracted by moving to my keypad, in case response time mattered, missed seeing a number, and was still flustered and not ready for the next string. A re-set would have helped.
I'd started going to meetings for Adult Children from Dysfunctional Families around age 40, and there was never a mention of genetics there, even though alcoholism can also run in families. Finally, when I was 56, I was trying to help my sister understand our AS mother, and ran across a list of AS characteristics. Both her life and mine instantly made sense. She was a classic "cold mother" but all inquiries into why I was an odd kid came to an abrupt half if anyone asked about her parenting style.

Thanks for participating Dear_one. The numbers bit is not timed and after chatting to people who took the first version of the test I realised that the instructions could have been a lot clearer but I needed to keep them the same for this version in order to constructively use the results. I'm glad you got to participate.

I was diagnosed by a psychiatrist, but it was informal, because there was no use for paperwork. Which survey do I participate in?

Hi toadsnail, thanks for your interest. It's really up to you and how you feel. One comment I've seen by americans is whether you declare you're autistic on insurance forms is a good way of deciding. There is a space on the questionnaire to make a note of anything that you're unsure about. The overall research is about age of diagnosis so the split is a bit arbitrary and as the survey for diagnosed people is finished, maybe have a go at this one and see how you get on.

"Self-diagnosed by a psychiatrist" it is, then.

I participated in the survey.

I was assessed as a kid and as a teenager, and also have a sibling who was diagnosed with Asperger's as a child.

I was told it was likely that I have ASD after the second assessment, but never actually received a diagnosis that's on any of my medical records, so I participated in this version of the survey since my autism isn't really formally recognized.

i tried to, now im blocked out, there's no back-arrows, we're not supposed to look ahead?
one should warn about that

same old questions
how about updating on the library question
these days (before plandemic) libraries are trying to get as much people and multimedia they can,
that's really enjoyable if you like hords of children, or hords of teens

For me the question still works because it's just "Would you rather go to a party or..." -- "Yes, the other thing!"

Hi everyone, thanks for participating!
traven - you raise an interesting point about back arrows. To my knowledge looking ahead on these things is probably not advised.
However, I do apologise about the same old questions There was a long discussion about it in the thread for the previous survey (the thread is called "Age of diagnosis survey" if you want to look) but the TLDR version is that I have to use existing scales like the AQ for several reasons (I'm a lowly postgrad so don't have the time or resources to make my own etc...). They are the most reliable and valid scales available but even the ones for autistic people were generally created by non-autistic people so they are going to have silly items, like the library one. By participating in this survey, you've helped this autistic person in my mission to change things, so I really mean it when I say thanks!

Yes, the library/party and theatre/museum ones always get a "slightly" answer for me, as I would always choose "C. Neither, I'll just stay home." I took the survey. I'm self-diagnosed, maybe a year ago or a little less.

I will do the thingie later. Is it eligable for me? I am awaiting an assessment. I believe I am on the spectrum but I am on a list to be assessed so I can find out.

I just did the survey.

Not all the eyes loaded up so I only answered the loaded up ones. Also, when I saw the eyes, I guessed most of them because some describing words I am not sure what they mean as my vocabluary is not that wide, and also I often found none of the descriptions matched the eyes, so I just picked the closest. (I am terrible at guessing eyes like this!)

I did this survey, although I did get an informal diagnosis from a psychologist a few years ago.

The reason I was hesitant to do the other questionnaire for the diagnosed was in my case the psychologist didn't see the need to do the full suite of testing like they do for younger people, so it was only a diagnostic interview and a questionnaire over two sessions.

Since then they've changed the diagnostic requirements in Australia, so if I were to try for a diagnosis now it would be more difficult as you need to be assessed by a multi-disciplinary team not just a psychologist, so to do it privately would be cost-prohibitive. And its hard to go the public route as GPs are not trained to recognise autism in adult females and will tend to place all issues in the anxiety/depression/ptsd basket rather than make an autism referral. There's also a tendency not to see the point in referring adults on the basis that we've managed to survive this long.

So I feel very lucky to have got even an informal diagnosis - and am probably more representative of those who haven't got one.

Thanks everyone. I haven't been online for a couple of days so I'm glad you did the survey Mountain goat, it was entirely designed for people like you. Sorry you had an issues with the eyes, there are newer versions but they require watching videos and stuff, and I think I'm taking enough of everyone's time with a long survey, I don't want to hog your internet as well!
MrsPeel - Thanks for participating, the reason I ask where people grew up is to get a sense of diagnostic standards in various countries. One of the highlights of this site is the contributions from all over the world.