Age of diagnosis survey

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For some reason I do okay on the Mind in the Eyes test, but am consistently in the aspie range on the AQ

Hi everyone, thanks for your interest and interesting comments.

CarlM - I actually just used that website for my introduction, it's very handy esp. as it's hard to get hold of the DSM (even with access to a uni library account!). The link to schizophrenia is a controversial one but it was mainly a misinterpretation of autistic traits. There's a research called Shawn(?) Eack (I think) who has done a lot of more recent work on schizophrenia and autism that you might find interesting (if I find any other links of possible interest to anyone involved in this conversation I'll post them in this thread).
Dear_one - If you haven't already, check out CarlM's link, as you probably know so much of this is arbitrary, who is to say who is sane etc... It sounds like you have had an interesting life and if I ever get my next project funded, I hope you'll be up for talking to me more.
Redd_Kross - I totally agree! I'm not at the stage where I can make these changes yet and it is endlessly frustrating (asking a NT ethics panel to decide if my study, created by a ND for NDs, is ok, for example!). The best bit of advice I received (and unfortunately ignored until recently) as an undiagnosed autistic teenager was to play the system, not fight it, until in a position to create change. I'm on the case and really appreciate your help.
Jiheisho - Exactly, we're all in agreement that the current way is not necessarily the best but I have some big ideas for this thing we call science
TenMinutes - I'm really sorry. This is a perfect example of what other's have been talking about, I wanted to make the information for the numbers test more explicit but was actively told that I can't change the wording (even though I had anticipated issues like this). Thanks for bringing this to my attention and thank you so much for your time.
aquafelix - I'm the same Just one of the reasons this topic is so fascinating! Thanks.

I'm just over half way to my target and have about a week left. It's all getting very exciting!

I had never even heard of AS until I was 26 or 27. It was always apparent to me and my family that something about me was different, but for the longest time I could never put my finger on what exactly it was. As a child I moved to Libya than as an adult I returned to the US, so being unfamiliar with the local culture and social norms, combined with a history of child abuse, seemed like a good enough explanation for a while. At one point my mother drew a comparison to Rain Man but concluded that I didn't fit what was commonly understood about people with autism at the time. The first time I asked a therapist about autism he refused to even consider it. And even now I only have an unofficial diagnosis.

Done! It only took me 20minutes I had to check I'd not missed something

I completed it! The eye section was difficult.

I was diagnosed Asperger's/HFA when I was 30-31.

Though it's all just ASD now I'm pretty sure.

Thanks everyone, Dorkseid - I appreciate it's hard to get a diagnosis which is why my next project will include people without official diagnoses (if I can get the money!)
Autisticcat - thanks for your time, the average is about 30 mins.
2cat007 - thanks, the eyes test is certainly proving to be a controversial one! I find the numbers bit the hardest personally.
Danusaurus - officially yes, it is just ASD but many of us prefer ASC. My actual diagnosis was childhood autism that's HF in nature... I was 41!

I still need people so if anyone is interested please have a look.

Kraftie, I just finished the book NeuroTribes. I didn't realize I was reading about you. What a diagnostic ride.

cat303, teasing (but serious): can you please have someone re-write the AQ? I tell you, so many of the questions are horrible b/c they assume an NT unaccommodated situation, without stating so. I will PM you.

SPOILER ALERT One example
"I would rather go to a library than a party." ---- ummmm, I'm an extrovert, I'd rather go to a party that's sufficiently AS-friendly: relatively quiet, thoughtful, inclusive. If it's an NT-biased party: loud, careless, I'd rather be at the library. Please, it's painful to have to infer how I am SUPPOSED to answer based on NT biases.

My first time taking it I scored lower because I took everything literally. I started to score higher when I realized what really was being asked (with NT bias). Really I should have scored even higher the first time b/c I was interpreting the Qs literally.

I have finished your test. Thank you. They were the exact same eye pictures that I had during diagnosis.

Pet peeve with AQ question: Theatre or Museum.

- Is it a cinema (a dark theatre where you can hide in the back row eating popcorn), or a stage theatre where you have to dress up and socialise with others and pay a lot for the tickets? Is the museum brightly lit? Which one is more crowded or noisy? So many questions.

Also I didn't see a place where I could mention other comorbids that weren't listed. I had everything in the list and then some extras such as having suffered strokes, having mutism, and synaesthesia (which helps me to remember numbers even though I'm diagnosed combined-ADHD).

Lastly re: the masking questions. I don't have masking skills. I don't know how to make a script or mimic others even though I should. It sounds like I'm coping well if I don't mask, but in my case it's actually detrimental to my social function.

They weren't really putting autism with schizophrenia; they were putting autism with CHILDHOOD schizophrenia---which was seen as being quite different from adult schizophrenia.

Infantile autism, definitely, was seen as a distinct disorder even in the 1940s.

There's a YouTube video of two children with autism being filmed about 1960. One was more severely affected than the other. There was no mention of "childhood schizophrenia." These children were called "autistic" children.

Thanks, Sharon! I really don't know how I was able to "emerge" from my autism. I think of it sort of as a stroke of luck.

Sharon - Thanks for your time and brilliant solicited and unsolicited opinions! I totally agree with everything you've eloquently said.
Isabella - Thank you more like, I really do appreciate everyone taking the time to do it and it's nice to be able to chat about it on here. The eyes are a standard test so everyone sees the same every time, although well done for remembering! There are 100s of possible comorbids and I toyed with the idea of just having a write in option but I only have so much time so just went with a few main ones that are already covered in the literature. Masking is an interesting area that has very little written about it. I hope to change that but it will take time to do proper interviews so will have to wait till I get the funding.

To everyone - The AQ has issues! When I first got sent it, I sent it back half answered with comments all over, asking what sort of theatre or museum etc... and 'when I talk on the phone...' hasn't aged well etc... I've been told since that picking holes in the screening tools is something that makes diagnosticians notice (possibly more so than the actual score)! The majority of these tests were made by NTs to help them categorise us in their NT ways. There are also obvious issues with self report surveys in themselves. I completely intend to change as much of this as I can (and it's not as easy as you think to be an autistic autism researcher!).

Done.
But my diagnosis was a month ago, so I'm not sure how valuable my contribution was...

/Mats

I suspect I'm not the only one who read that who thought "But of course I wanted to discuss those questions!" Now I'm going to think "You mean those crazy NTs just plow ahead without thinking about things!!"

I did it. Good luck!

Did it in a rush in between jobs. The numbers it burnt my head out and I actually nearly gave up. But I stuck with it.

Have fun collecting all your results