Age of diagnosis survey

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I have to agree. I've taken this test before and even then I thought that it didn't take into account cultural factors, that the questions were often too vague, and that they don't allow for differences in personality and interest within the neurotype--my son is autistic but extremely outgoing, for example, and I'm a writer/director, so I might chose a play over a museum, even though I'm generally an introvert.

That's a major hazard with surveys for me. It isn't uncommon to wonder if I should answer honestly because I have a particular quirk, or lie to stay with grouping being asked about. Fairly often, the questions tell me that no matter how I answer, I'll be mis-classified because the author just can't imagine me. On public opinion surveys, if I say I'm not happy with the Police protection, I'm probably voting to get even more of the same, rather than different.

Hi everyone,

I'm entering the final stretch with just under 2 weeks left to get my target number of lovely participants. I can apply for extra time but not only is that a huge pain in the backside, dealing with people I don't want to deal with, but it will take me longer to get to the fun bit which is telling everyone what I've found out (if anything).

mohsart - Your contribution is hugely valuable as is everyones. All studies like this need variety, that's why I love this site. Thank you.
Double Retired - I don't get your comment, sorry. I've had a crazy morning so maybe it's my brain fog!
Benjamin the Donkey - Thank you and thank you!
babybird - I'm sorry about the brain burn but I really appreciate you fitting it in and sticking it out. Many thanks.
Dear_one and Benjamin - You've hit the nail on the head with "the author can't imagine me". Ever since I got involved in this psychology lark I've wondered how anyone can base things on such vague groupings... the IQ scale, for a most basic example, is essentially based on nothing! But it all works! I think so long as those doing (and presenting) the research have some kind of awareness of the fallibility of research then we can achieve things and there's always qualitative research to fill in the gaps of quantitative evidence.

I'm thirty eight. I was diagnosed yesterday. NC Teacch diagnosed me. It took ages to get to the right place, then longer to get an appointment. I'm still in my feelings about it. I was hoping that so many people who suspected had been wrong and that I didn't have autism after all. However, the doc said that I fit all the criteria for the dx.

I'm sorry. I can't resist trying to clear some of the fog. Feel free to ignore me, however--I'm a husband so I've been ignored before.

Your comment suggests to me that "picking holes in the screening tools" is something an Aspie is likely to do. I suspect a lot of the people who read your comment were Aspies (since this is WP) and therefore there was an increased likelihood they would want to pick at the questions. Hence: "I suspect I'm not the only one who read that who thought 'But of course I wanted to discuss those questions!'"

But your comment further suggests that NTs, for some bizarre reason, would be less inclined to pick at the questions. From my (Aspie) viewpoint that NT complacency is kind of strange. Hence: "You mean those crazy NTs just plow ahead without thinking about things!!"

Coincidentally, this morning I was taking a different Autism study's questionnaire and happened to consult the Psychology Report that diagnosed me as Autism Spectrum Disorder, Level 1 (Mild) and I noticed it included the statement "When completing self-report measures, Mr. XXXXX was observed to approach each item thoughtfully and carefully. In addition, he was noted to ask frequent questions, often due to exhibiting a more rigid interpretation of the items."

And, the questionnaire I took this morning... At the end of it I was allowed to give feedback about the questionnaire--and I picked at their questions.

^^ The corollary of which is: Hire Aspies to road-test your surveys before using them. I often b***h about the accidental vagueness of even the most expensive, respected pollsters.

Thanks for that, I get you now! "Those crazy NTs!" is a common saying in my household

Hey, I also do autism research at uni. I'm not as advanced as you, though, as I'm not too far into my Neuroscience degree. I was diagnosed at 17, which is rarer than winning the lottery for some autistic girls.

Sounds like a bright bunch!

In the book NeuroTribes it mentions: "Nothing About Us Without Us" --- nothing about Autism, without Autistic input. Go get 'em!! (of course if NTs are in charge it often requires an ego-affirming approach)

Can I send the WP link or your survey link to folks I know with diagnoses that are not on WP? When's the current deadline? (Unfortunately most of my women friends that likely have ASD are misdiagnosed with something else.)

Slightly off topic:

I hope you don't mind, Cat, if I ask you if the supposed truism "80% of autistic people are unemployed" is true. I have seen this "truism" repeated throughout the time I've been on WrongPlanet. It's usually from people who feel like they must "give up" because of that "statistic."

I find that a considerable amount of autism research seems to deem "autism" to be a monolithic condition, and not something of a "spectrum" nature.

Please note that this is not a criticism of you, or even of "NTs," whatsoever.

Continuing OT... that should change given the expanded Autism Spectrum criteria (in the US at least). Perhaps time to stratify by spectrum characteristics and/or acknowledge the underemployed. Oh, wait, I'm unemployed right now (due to workplace hostility while underemployed). Ha, ha, ha.

I wasn't criticizing people who are unemployed...at all. Many people become unemployed for many reasons.....even very "accomplished" people. I've been employed 41 years, and I'm not "accomplished" at all.

Sharon-----you were certainly pretty well up there (much more than I can ever hope to attain).

All I was saying is that people tend to rely too much upon statistics in making life choices. And I was giving my impression that much of autism research tends to consider autism a monolithic condition.

Hopefully, the diagnosis will help you eventually.

I'm with you, Kraftie. Sorry I didn't explain. It's been said I explain too little or too much. Give that was my "too little", watch out that this may be "too much".

I get it. I just finished reading 500+ pages of NeuroTribes which often touched on the variety of breadth and depth of ASD, including what you mention above. It also touched on the statistical misunderstanding about the Autism "explosion". If a person wants a shorter read, its Afterword alone (6-7 pages) is worthwhile.

My underlined emphasis and "ha" meant I was bitterly laughing at the irony of my situation - that I would be considered one of the "lucky" ones and yet my "luck" ran out --- the negative bias against difference caught up with me (it was always there but a few evasive maneuvers delayed this moment). I am well aware jobs considered to be "easy" by many NTs would be a disaster for me and that my only choice is to find something in an inclusive workplace which many NTs would consider complex (but is easy for me, which is near impossible for me to convey in an interview). Also, if my ASD-like grandmother and my ASD-like mother had found supportive workplaces they would have rocked it, but instead they languished unemployed for most of their lives. Just yesterday my BFF and I were talking about her ASD-like dad's success (as his own boss, small business owner) and yet he is disappointed that he was "underemployed" his entire life (that he didn't make a larger impact in his industry). His ASD-like son is in Corporate America and has just hit the ASD-like-ceiling... time will tell if he can find an inclusive workplace or makes one... I could go on and on which would amuse me and torture others. All those connections I see, real or imagined...

Thanks for the discourse.

Hi Sharon, I use that phrase a lot, it makes perfect sense to me esp. given the diversity among us. Please send the link as far and wide as possible, officially I should stop data collection on the 6th but getting enough people is more important than an arbitrary date.
I love the 'too' long version, you write very eloquently and I've 'been there' more times than I can remember!

Hi kraftiekortie, autism statistics are notoriously hard to establish, some of us don't even have diagnoses. The numbers that keep coming up are 1 in 100 are autistic and 16% are employed (with 60 something % wanting to be employed). (These are UK figures, other countries follow the same trends but will obviously differ from the vague figures mentioned here!) As far as I can ascertain these figures were based on a 2012 survey that can be traced back to the National Autistic Society. I can't say if it's true but there's always going to be people who use it as an excuse and those that use it to motivate.

Personally, I had an awesome career for 20yrs before knowing I'm autistic but before autism was even suspected I had what I now know was a big old life changing burn out. My reason for doing this research is that I want my autistic niece to be able to do the things I've done but with the support her knowledge of her brain can give her, as opposed to being stuck in an autistic bubble where she's not confident enough to get out in the world. Clearly, we are at a disadvantage in most professions as even leaving the house to get to a job can be hard for some. I could never work in an office as the noise of the lights would drive me mad, for example (but I was fine running music venues for yrs!).

One of the main problems with researching autism as a lifelong condition is that we tend to only get to adults that are able to use the internet and can speak for themselves (I'm trying to avoid the bad terms, hopefully you get what I mean). Most autistics who need daily care aren't represented in certain figures. I'm not sure it's treated as monolithic so much as homogenous but the 'nothing about us without us' sentiment does represent a change for the better in this regard.

I want to say loads more but will post this for now and come back hopefully after my meeting.