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Bloodheart
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03 May 2011, 4:40 pm

In general - where are they all?

Say for example WP - 49,221 members.
Global web site, granted largely English-speaking countries only but still one of the largest AS/ASD communities online, that 49,221 members actually seems a pretty low number, more so when you consider how many members are inactive or just lurkers.

Another example - my college.
I'm informed there are over 100 AS/ASD students (not counting those who have not registered with student support, or those not diagnosed)...I've yet to see any of these 100 students. For that matter in Newcastle, a large city, I've only heard of two people on the spectrum - there are more, but where are they and why do they keep quiet?

When you have estimations of 1 in 100 (or whatever the latest statistics claim) people as being AS/ASD, surely there should be more of us popping-up, I find it difficult to understand why I haven't come across more people with AS/ASD either in real life or online - yes, it is possible that I have but not noticed, however I feel my point still stands.

Is it that others on the spectrum maybe don't want to be social, maybe they aren't interested in socialising with others on the spectrum, or maybe they just want to live as NT so being AS/ASD is a non-issue for them - or am I missing something? Surely I can't be the only one like me in the whole of NorthEast England or the whole of Newcastle, the only one who wants to meet others like me.

Are the others just shy? :lol:
Or are we freaks amongst AS/ASD people for wanting to communicate/socialise in some way with others?


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Phonic
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03 May 2011, 4:53 pm

The number does seem low, but it's true of many sites, I was part of perhaps the largest forum for a given subject (I wont name the forum) and it had maybe 1500 people on at any given time (like here) and yet the actual number of people that were part of this interest is probably in the millions.

every point subtracts a huge number of people though:
* not knowing about WP
* Not having internet
* Not being interested (that's probably a huge number)
* Already a member of another autistic forum
* don't perceive need
* to afraid

That could be thousands of autistics right there.


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Tequila
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03 May 2011, 4:58 pm

A lot of those near-50,000 people don't post here at all, or have only posted once or twice. It's really only a small selection of people (like myself, who is in the top 50) that post often.



Bloodheart
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03 May 2011, 5:01 pm

But why are so few other aspies/auties not reaching out or making themselves known.


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raisedbyignorance
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03 May 2011, 5:08 pm

I tried to form a organization for aspies and auties at my university. Didn't know the first thing about starting or leading an organization and none of the faculty at my college knew a thing about autism or Asperger's.



Verdandi
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03 May 2011, 6:14 pm

Tequila wrote:
A lot of those near-50,000 people don't post here at all, or have only posted once or twice. It's really only a small selection of people (like myself, who is in the top 50) that post often.


Yeah, I posted about the Pareto Principle (20% of the people produce 80% of the activity0 and the 1% internet culture rule (1% of the population produces the majority of the content, 9% edit/respond to that content, 90% don't participate). While these percentages are unlikely to be precise across the board, it's a sound principle that applies to just about every online community I've been a part of.



TenPencePiece
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03 May 2011, 6:24 pm

I wonder about the 1 in 100 estimate because that would mean that my town would have about 500 people with AS (or is that autism in general?). I can't really see that being true, but yes, of the ones who actually know about their ASD, I doubt that many would actually want to do anything more than lurk at places like these.


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Bloodheart
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03 May 2011, 6:39 pm

TenPencePiece wrote:
I wonder about the 1 in 100 estimate because that would mean that my town would have about 500 people with AS (or is that autism in general?). I can't really see that being true, but yes, of the ones who actually know about their ASD, I doubt that many would actually want to do anything more than lurk at places like these.


My favourite term - "There are three kinds of lies: lies, damned lies, and statistics."
I wonder about the estimate too, but certainly it must be a fairly high number.


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SammichEater
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03 May 2011, 6:47 pm

I'd say 1 in 300 or 3 in 1,000 is more accurate. And of those aspies/auties, I'm guessing somewhere between 1/4 and 1/20 actually even know what AS is. Of that small percentage, only a handful have probably even considered joining an autistic community online.


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TenPencePiece
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03 May 2011, 6:53 pm

SammichEater wrote:
I'd say 1 in 300 or 3 in 1,000 is more accurate.

It probably varies from place to place for various reasons but I think I'd put my local area at somewhere between your estimate and the 1 in 100 one. Does anyone know the original source for that estimate?


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emmyblowgun
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03 May 2011, 7:09 pm

Bloodheart wrote:
But why are so few other aspies/auties not reaching out or making themselves known.

I've been lurking. I don't have much desire to be social. What desire I do have is more than fulfilled just by the time I spend with family and with my boyfriend (who is also on the spectrum). I often feel like people are pressuring me to spend more time socializing than I feel comfortable with.

I'd probably post if I had something to say. I'm not shy.



willem
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03 May 2011, 7:10 pm

Bloodheart wrote:
But why are so few other aspies/auties not reaching out or making themselves known.


"Meeting new people" is not a top priority for most autistics.

If you're looking for a friend near you, chances are you'll find him/her online, even if s/he lives right next door to you.


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SammichEater
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03 May 2011, 7:47 pm

TenPencePiece wrote:
SammichEater wrote:
I'd say 1 in 300 or 3 in 1,000 is more accurate.

It probably varies from place to place for various reasons but I think I'd put my local area at somewhere between your estimate and the 1 in 100 one. Does anyone know the original source for that estimate?


I know I've read articles that have said both. This one says 35 in every 10,000, which is 3.5 in every 1,000, so that's close enough.
http://www.inthelight.co.nz/spirit/aspergers.htm

Quote:
Prevalence in Population

The percentage of people with Aspergers disorder is not fully understood. Approximate statistics that I have gleaned from different sources are as follows:

* 4 people in every 10,000 have autism
* 35 people in every 10,000 have Apsergers Syndrome (about 10:1 ratio of male to female, though the lower incidence of women may be due to their ability to mask the condition and remain undiagnosed)
* 15 in every 10,000 have another type of PDD (Pervasive Development Disorder)

This means approx 0.5% of the population has some sort of Autistic condition. In the UK it is estimated that:

* Around 325,000 people with autism or aspergers
* 10% of these are in long-term full-time employment
* 80% never marry or form stable long-term relationships


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MidlifeAspie
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03 May 2011, 9:06 pm

Tequila wrote:
A lot of those near-50,000 people don't post here at all, or have only posted once or twice. It's really only a small selection of people (like myself, who is in the top 50) that post often.


A lot of those 50,000 people are bots. At least half.


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buryuntime
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03 May 2011, 9:24 pm

The surge in diagnoses is mostly in children I'd imagine. This is mostly for adults.

In college, maybe they have bad communication and don't know how to reach out. I mean it's not like you can look at someone and automatically know they are autistic. If you could it'd be rude to go up and talk to them about it.



izzeme
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04 May 2011, 2:38 am

then not knowing part is the biggest repelling factor imo; both not nowing about WP and not knowing about their own autism in the first place.

it indeed might just be that there are less people with AS then the latest statistics, but i'm not so sure about that;
in my college, there were a heavily effected low-social HFA and a quite mild AS/PDD person, aside from me in my freshmen-introduction group.
also, within the orchestra i play in, there is one aspie i'm quite sure of on the other side (from my perspective) and yet another HFA sitting right next to me and there are another 2 in my college dorm (out of 17, not including me), one on the very mild part of the spectrum, but trying to find out more, and one that's obvious (to me), making 6 ASD's in the about 200 people i can say i 'know', and there are at east 3 or 4 more that show a few symptoms of the spectrum as well...