What percentage of autistics don't know they are?

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I didn't have a clue that I had Aspergers (or even what it was) until I was in my 30's.
I'm wondering what percentage of people with autism are undiagnosed and have no idea that they are autistic?

Now that I know more about autism, I look around at the people at work and think a lot of them look & act autistic too.

That's a good question.
I wasn't aware of the possibility before I was 26 or 27, and was officially diagnosed at 31. I had known for a long time that I was different, but I had no idea that it was an official diagnosis for my difference.

Who knows... I find it to be scary and disturbing. I'm like you, I was clueless until my thirties... Hell, I just found out this year so I still think of myself as clueless. I could not believe this all was out there and no one ever thought to let me in on it. The lack of awareness is sad and horrible. Who knows how many there are out there. I think if suddenly everyone was evaluated to see if they fall on the spectrum, the statistics would astound us. I mean, it does tend to run in families and it is largely a 'child disorder'. How many children are out there with no one else in their family diagnosed? My husband works in a school that has two classrooms with autistic children in it. While I do not know an exact number as I have not interviewed all the families of these children... from what I have heard and observed, most of these children have parents who are uneducated in regards to autism and rely heavily on the school social worker and occupational therapist for help and understanding. These parents largely did not know what autism was until their child had issues in school. So say there are ten kids in each of these classes and I will be nice and only say that half of them have clueless parents, that leaves us ten children who have parents did not know what autism was. That likely means their families did not know what autism was. These parents might fall on the spectrum, have siblings, aunts, uncles, cousins, grandparents who very well could fall on the spectrum. Even if just one other person in each of the families does, you then went from ten kids to twenty people in just one example. This question of yours runs through my mind often.

I'd say more than 50%. Probably way way more, but there's no way to get accurate numbers.

I didn't find out until my 30s. (It was an a-ha moment of a sort for me. There WERE other people like me after all!) My parent's didn't have a clue.

I was in my late 20's when I found out about AS...Someone suggested I look into it, based upon my descriptions of my difficulties.

I was in my late teens when I found out about ADD..1994-ish...That only covered part of my issues...but that was a big eureka moment for me...I had no idea that such a thing existed...

I sincerely thought that I had brain damage, or that my mom must have used drugs when I was in the womb...

When i was a child, there was some notion that I had issues, and this was usually brought up by my paternal grandfather...who's brother had some extreme traits....and who seemed to have traits himself..mostly manifesting as extreme OCD...but um...howyousay...The word "autistic" entered into my vocabulary when I was about 7...any notion that there was something wrong with me was poo poohed by my parents, and my difficulties in school were blamed on the system.

I was always aware of the ways in which I struggled..and I always wondered what was wrong with me..and why, even when I had friendships, I was always an outsider, and there was all this other stuff going on that everyone else was tuned in to but that I could not grasp...

My very AS-ish friend had no idea about it until I talked to him about my issues...He was even a late-talker...He grew up in a tiny town in Illinois. I am not sure what it was like for him in school...
I do know he has a lot of traits...and is not opposed to the idea that he is likely on the spectrum.

Last edited by poopylungstuffing on 19 Oct 2009, 1:12 pm, edited 1 time in total.

I'd always known I was different in many ways to other people but never knew why until I stumbled on Aspergers a couple of years ago - it was a revelation to say the least! I'm 49 by the way.

Honestly, for almost a year (when I was 11). I had this crazy thought in my head that my mother put some mind altering drug into my food for my entire life and that's why I am so different from others.

3.1428571%

I find that number so close to pi - and miss - to find it strangely irritating to look at. Must be Aspergers

My experience is like many others. I had not conception that I was atypical as a child/adolescent. This was further complicated by my sexual orientation. I ascribed a lot of my dissociation from my peer group as a function of being gay.

The first diagnosis for me was my Tourette's (because it has the more overt presentation of symptoms) in my mid-20's. As I started to look at comorbidity and making some connections, the puzzle pieces began to fit.

If it's that much, the number of autistics is likely going to increase quite a bit in statistics, too. Anyone know of any larger study about the prevalence of autism in adults? A small UK study I learned about recently, says 1 in 100 (almost same as prevalence for children), so in that sense it would be strange if 50% were undiagnosed (unless you're saying autism is really closer to 1 in 50 than 1 in 100).

I think it depends on your definition of autism. If people who have no significant problems at work, school or ins ocial life (eg. because they are okay with having no close friends) are counted, the number is going to be much higher than if only those who have significant problems in functioning are counted (as the DSM would have it).

yea and u got to to think of many adults either in group homes or institution settings who have the label or diagnosis schitzofrenia or mental retardation who would be clearly autistic today, i wonder if we did a test or study of all the adults over 20 in group homes, day programs, adult daycares, institutions, assisted living areas and re-evaluate them, i dont doubt there number of adult autistics would be much higher, because you have to remember there was really no pddnos back then jsut kanners autism and that was even rare to hear about!

I bet 1 in 100 is more than that. It could be 1 in 10 or 1 in 50 who are on the spectrum and we don't know it. There are still lot of undiagnosed adults out there and I think lot of adult aspies are self diagnosed or suspect they may have it.

I have always known I was different but I thought it was due to how I was being treated. My friends didn't want me over, they rarely let me in their house. Kids push me away and I seemed to be targeted more for being picked on. I also thought I had to work harder to get better and I will be like everyone else and I just needed more practise. I never knew what was wrong with me and why I was a target and why I was treated different. I thought I was full of bad luck and thought "why me?"
I never thought me talking about my obsessions or thinking about them was abnormal or me not liking change that much or disliking group projects. I found them so hard to deal with. I didn't even think I had sensory issues and everything felt the same to everyone else too and couldn't understand how can people wear tight jeans and stand that feeling. My mom would tell me you get used to it and your stretch them out as you keep wearing them. I was even told when I was 10 you get used to group projects. My mom even used to tell me don't do this or that and kids will like me then and I will have more friends. She would even tell me things like the reason why kids run away from me or make fun of me is because of this and that I do and if I stop, they will stop and like me and I have more friends. Then I knew it be all my fault about how I was being treated. I didn't start knowing what AS was until I was almost 15. I knew I had AS at age 12 but didn't even know what it was and I didn't know it was called Asperger's syndrome. I thought it was just Aspergers because that's what my mom always said. I had no idea it was on the autism spectrum until I was 15 and my parents said I wasn't autistic and AS is just a form of it when I asked why does autism pop up when I look up AS. Well that explained why I would sometimes feel autistic. I didn't know what autism was until I was 13 and that was from watching Mercury Rising and I thought all auties were like Simon. But when I learned more about it, I started to feel I had it but didn't think I did.

I've gotten used to aspies calling themselves autistic and people calling aspies autistic or saying they have autism. But now it just leaves me confusion because when people say autism, I assume they mean the whole spectrum, not just autism. When someone says they have autism or are autistic, I don't know if they have AS or PDD-NOS or plain autism.

59 before I put it all together.

I have met many that looking back I now know why.

The DSM looks only to make money, but the traits are found in a lot of people who having no choice in the past just got by and lived.

I would say more than 1 - 50.

Private jails and group homes are known for paying kickbacks for referrals.

Wrong Planet is the only place that does not have an economic interest in the numbers.

Before Wrong Planet the five to one sex ratio was industry standard, now since WP is 50/50, females are being seen for the first time.

Non disabled Autism is still Autism, and knowledge can help a lot of functioning people live better lives.

That would be interesting to find out if we could get an approx figures on that. I didnt know I was till I was 18. Autism spectrum disorders are thought of as childhood disorders. Its kinda like what do u do with us once we become adults. I didnt find out till I was adult. I was so weird cause u would've thought that this would've been caught at a younger age. If aspergers was as well known about as say ADHD then I probably would've been diagnosed between ages 8-10 maybe.

I bet for 1/50 to 1/30 as a final number instead of 1/100 as now.

I think in the future we will be around 1/10, aspie number will increase because we will more likely mix up with "our-kind".