Percentages Of People On The Spectrum....

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Mountain Goat
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28 Sep 2021, 6:36 pm

Real figures can be much higher then official figures show and here is why. In nearly all the countries in the world one will only be put forward to be assessed if either when one was young one "Displayed" significent traits for someone somewhere to notice (Usually those who are not able to mask), or if one has some sort of crises or breakdown later in adult life or even when in school or college. Usually later in life when burnouts get more severe due to the mental effect of years of masking.

Now these official figures do vary from country to country. In the developed world leading countries the figures are as high as 2.5%, but in third world countries the figures are as low as 0.5%.

I watched a lengthy Ted talk given by a professor of psycology who studied autism as his leading subject. He started going round the world, country by country assessing people but using a different method. Instead of waiting for people to "Discover" they are on the spectrum and then assess them, he decided to start taking large groups of random volunteers who he did not know if they were on the spectrum or not, and put them all equally through the assessment process, and understandably to do this he had to have the help of local psycologists because certain countries peoples would display certain peculiarities which could be mistaken as autism traits by people who are used to a different culture, so he was very aware of this when doing his studies.
He went round the world country by country doing this, and to his amazement, no matter what tribe, race or countries people he assessed the percentages always came back as 6%.
He cecked the figures and did many further random volunteer groups who were not initially told that they were being assessed for autism (As he wanted the people to be completely random "Off the street" type volunteers so the results would not give any false readings), and he tried small groups of a hundred and large groups of a few thousand, and they gave the same approximate 6% final figure... And it was the same rigt across the world.


Now are we missing at least four percent of the population who are very likely to be suffering and not knowing why? This potential 4% who do not even know that the social difficulties they are daily facing has a name and that they are not the only ones who are suffering? A four percent who can be helped and prevented from having breakdowns and burnouts later in life just by making small adjustments to their lives had they known!

So whenI hear figures being quoted by well known autistic organisations quoting things like "There are one and a half percent of the population who are on the autism spectrum" I think to myself "No. There are one and a half percent of people who have been assessed because they have either hit crises point in their lives where someone has correctly diagnosed them, or they are the fortunate few (Some say not so fortunate) who have been assessed as a child because they were unable to mask their traits". We are not assessing everyone so we have only a small percentage of the real population out there who could and are very likely to be on the spectrum if this professors research is true.

I am often looking at Youtube. When I first found out a clue about autism, I started hyper studying all Youtube things I could find on the subject. I hardly slept for days and one could be forgiven if one thought I had watched every single Youtube clip about autism (Actually I did about the subject of prosopragnosia (Faceblindness) which was a major clue that pointed towards autism along with many other "Jigsaw pieces" along the way. I watched every single prosopragnosia youtube clip I could find and it took me three whole almost non stop days!) I don't remember the professors name or which Ted talk it was, but if I do come across him again I will include his Ted talk on this thread as I found what he said fascinating.

So to conclude. The official figures and the true figures are very likely to be very different simply because we tend to only assess those who have personally "Discovered" what autism is, or who have had autism discovered for them. It is very likely that the majority are out there suffering and simply don't know!


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CarlM
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28 Sep 2021, 8:27 pm

Everything I've read suggests that ASD prevalence is similar throughout the world. They claim the generic markers they find are very ancient. However to put the number at 6% they must have moved the goal posts to get that high. An assess-every-kid study done in a Korean city found 2.6% One in 38 kids in South Korea may have autism: study


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Last edited by CarlM on 28 Sep 2021, 8:30 pm, edited 2 times in total.

IsabellaLinton
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28 Sep 2021, 8:29 pm

Too bad they couldn't have put at least some of that manpower toward testing people who are already on wait lists.

They need to be included in the data too.



Mountain Goat
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28 Sep 2021, 8:42 pm

IsabellaLinton wrote:
Too bad they couldn't have put at least some of that manpower toward testing people who are already on wait lists.

They need to be included in the data too.


While I agree with you, the study would be biassed towards the majority having the liklihood of being on the spectrum if they only tested the ones on the waiting lists. They wanted completely random testing of the population.


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Mountain Goat
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28 Sep 2021, 8:46 pm

CarlM wrote:
Everything I've read suggests that ASD prevalence is similar throughout the world. They claim the generic markers they find are very ancient. However to put the number at 6% they must have moved the goal posts to get that high. An assess-every-kid study done in a Korean city found 2.6% One in 38 kids in South Korea may have autism: study


The six percent is what caught my attention as it is different from the normal estimates, so it stood out which is why I remembered it.


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IsabellaLinton
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28 Sep 2021, 8:47 pm

Mountain Goat wrote:
IsabellaLinton wrote:
Too bad they couldn't have put at least some of that manpower toward testing people who are already on wait lists.

They need to be included in the data too.


While I agree with you, the study would be biassed towards the majority having the liklihood of being on the spectrum if they only tested the ones on the waiting lists. They wanted completely random testing of the population.


Good point. But it does seem odd to exclude people who show a need for testing, from any country.

I wish there were some way around that without skewing the data, but I'm no statistician!



Mountain Goat
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28 Sep 2021, 8:52 pm

If they knew they were already on the spectrum (Or on the list waiting), it would have altered their results, so they had to not know to be able to get fair results.
My tablet battery is very low so I have to type quicker.

The issua is with most assessments is they take the ones who have already come to them to be assessed. They rarely take random large groups of people where they have no information about them (As in if they are already on the spectrum or not etc).
This makes a huge difference with the results.


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IsabellaLinton
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28 Sep 2021, 9:04 pm

I know, thanks. I understand that.

Maybe if they had that many assessment clinicians available or knew how to test quickly / en masse, they could have at least set up testing for a lot of wait list people, after the study. They wouldn't have to include that data. What's another week or month?

Wishful thinking from the perpetual idealist. :roll:



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29 Sep 2021, 9:23 am

I am not sure how long until I will be assessed. I have been on their list for nearly two and a half years. Patience! :D


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29 Sep 2021, 9:23 am

6% is remarkable!

I'll guess one factor is a lot of folk with mild symptoms have not been detected. Like me before I was 65, and even then it was only a fluke that I got an assessment.


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Nades
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29 Sep 2021, 9:39 am

I think more developed nations make autism more visible. Living in a busy nation with advanced communication tech and good welfare might make an autistic more likely to discover he/she has the disorder and make them less afraid to ask for help.

Living in a third world nation with more basic employment being the norm, stronger bonds to the locals and no such thing as welfare might force an autistic blend in with the crowd better.

I think there is no better way to mask than to be thrown into the deep end like having to grow your own food and having no TV. There is literally no escape for an autistic in many third world nations like there is in a developed nation.



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29 Sep 2021, 12:17 pm

Glad to see it getting more thought and attention. --- Empirically: Duh (to medical world) that there are significant unreported cases. Of eight of my closest family and friends who are likely Autistic, only 2 are diagnosed. The majority (75%) are undiagnosed. First my niece was diagnosed, then I was diagnosed b/c I was considering whether my daughter is Autistic. Because of a work crisis, my "symptoms" were more apparent than usual (to me). I've avoided significant crisis for my ASD daughter so far, so ironically she was not diagnosed ASD (she was given "Expressive Language Disorder" and SPD-like diagnoses). She expect she will be diagnosed: as the life demands grow, so do her difficulties ("symptoms"). My mom is likely ASD as well as my BFF's parents (and at least 1 sibling), but my mom has no interest in obtaining diagnoses, and my BFF has not breached the topic with her family. My BFF is considering an evaluation for herself. She integrated her "suffering" into her life (avoidance), so ASD does not "show" as much. My mom is able to hide hers also now (from herself even): "I am perfectly happy at home, by myself, avoiding my family including 'non communication' days...watching TV on my phone." Throughout her life she "managed" her symptoms by withdrawing (avoidance). IMHO her "high functioning" appearance is actually "low functioning". Similar to what Nades mentioned: she has escaped. I don't like it. I wish it were easier for her and the World to be mutually engaged. So in my experience: no diagnosis for the majority --- so, yes, 2-3% could easily be 6%.



naturalplastic
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29 Sep 2021, 2:50 pm

Thats interesting. Im not expert enough to say whether or not his methodology is right. And would like see if his high results are replicated by others.

But still ... it does feel right that autism in under reported, and that there probably is a similar percentage of autistics in every population the world over.