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CarlM
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22 Oct 2021, 9:10 am

Our study looked at people's ability to speak, more than just baby talk, and found 100% were nonverbal. In the interest of open disclosure, all of the participants of our study were between the ages of 3 and 6 (months that is). In tracking the participants over time, we found that many later gained the ability to speak.

Yes, this is a ridiculous and of course imaginary study, but not as nearly as bad as a statistic from the Autism Speaks website "An estimated 40 percent of people with autism are nonverbal." Autism Statistics and Facts. When will that terrible organization learn that making us look bad is not the way to help us. They don't even provide a footnote to explain where that nonsense comes from. But I think it's safe to assume they the "people" they are talking about are all under age 4.

I got on this rant when watching a video interview with Temple Grandin which shows a slide from Autism Speaks with the statistic "24%-40% nonverbal" of kids diagnosed with ASD: Temple Grandin urges parents and educators to expose autistic children to a range of experiences


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carlos55
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22 Oct 2021, 2:47 pm

CarlM wrote:
Our study looked at people's ability to speak, more than just baby talk, and found 100% were nonverbal. In the interest of open disclosure, all of the participants of our study were between the ages of 3 and 6 (months that is). In tracking the participants over time, we found that many later gained the ability to speak.

Yes, this is a ridiculous and of course imaginary study, but not as nearly as bad as a statistic from the Autism Speaks website "An estimated 40 percent of people with autism are nonverbal." Autism Statistics and Facts. When will that terrible organization learn that making us look bad is not the way to help us. They don't even provide a footnote to explain where that nonsense comes from. But I think it's safe to assume they the "people" they are talking about are all under age 4.

I got on this rant when watching a video interview with Temple Grandin which shows a slide from Autism Speaks with the statistic "24%-40% nonverbal" of kids diagnosed with ASD: Temple Grandin urges parents and educators to expose autistic children to a range of experiences


Its actually difficult to find the percentage of non- verbal autistic adults, just about every site refers to age speech should develop and childhood diagnosis, but I believe it to be around 20-25% of the whole spectrum from what I’ve read from a quick google search so at least 1 in 5 autistic adults approx. are nonverbal.

Even then the question becomes more complicated, what constitutes speech, is being able to say just 20 words really constitute speech?, what is the cut off where it is functional speech, as opposed to useless noise making or just being able to mumble mum or water?

In the old DSM it was claimed 50% were non-verbal, but that was before Asperger’s was added in 2013, where there is no speech delay, which pushed it down. Then older aspies kept getting diagnosed which pushed it down further.

So, the old saying in British politics - Lies, damned lies, and statistics come to mind.

Maybe tomorrow Xi Jinping will announce all Chinese 1.4 billion are autistic, which will reduce non verbal autistics to about 0.2 % so that will fix autism`s image problem :lol:


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22 Oct 2021, 3:05 pm

The thing that irritates me about statistics like this is they just freak out parents with autistic children who haven't learned to talk on time or are not the most fluent at talking. They see that so many children, especially small children, are nonverbal and sometimes are made to assume that their child is doomed to be completely incapable of talking their entire lives. It seems that even if someone isn't fluent at talking, that at least by late childhood-adolescence a fair amount of nonverbal children are able to gain some verbal skills and express themselves a lot better, at least with proper support. The constant focus organizations and medical professionals have on mainly very small children and their symptoms + functional skills is misleading and discouraging.


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22 Oct 2021, 3:25 pm

My little brother was basically non-verbal until he was 3.
He started talking a few weeks before he started junior kindergarten, he never seemed to have any issues with verbal communication after that and he's not autistic.


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Dvdz
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23 Oct 2021, 6:57 am

CarlM wrote:
Yes, this is a ridiculous and of course imaginary study, but not as nearly as bad as a statistic from the Autism Speaks website "An estimated 40 percent of people with autism are nonverbal." Autism Statistics and Facts. When will that terrible organization learn that making us look bad is not the way to help us. They don't even provide a footnote to explain where that nonsense comes from. But I think it's safe to assume they the "people" they are talking about are all under age 4.


If you click the "download Autism and Health: A Special Report" link below on the page, and then actually download the "Autism and Health report" pdf, you can see that the statistic comes from:

Ericka L. Wodka, PhD, ABPP-CN, Pamela Mathy, PhD, CCC-SLP and Luther Kalb, MHS, Predictors of Phrase
and Fluent Speech in Children With Autism and Severe Language Delay, Pediatrics. 2013;131 No. 4.

Which is open access at https://www.researchgate.net/profile/Pamela-Mathy/publication/235787901_Predictors_of_Phrase_and_Fluent_Speech_in_Children_With_Autism_and_Severe_Language_Delay/links/564c941008ae020ae9fabf77/Predictors-of-Phrase-and-Fluent-Speech-in-Children-With-Autism-and-Severe-Language-Delay.pdf.

They looked at 535 children, 163 (30%) had no phrase speech while 372 had. Mean age was 11-12 years old.



Mona Pereth
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25 Oct 2021, 12:06 am

Dvdz wrote:
They looked at 535 children, 163 (30%) had no phrase speech while 372 had. Mean age was 11-12 years old.

This was not 535 "autistic children" generally, but more specifically "535 children with ASD who were at least 8 years of age ... and who did not acquire phrase speech before age 4." In other words, no Aspies.

Among these non-Aspies, "A total of 372 children (70%) attained phrase speech and 253 children (47%) attained fluent speech at or after age 4."

In other words, even among children with "autism spectrum disorder (ASD) and severe language delay," (emphasis mine) only 30% remain nonverbal.

So, among autistic children more generally (by today's definition of ASD), no more than about 15% remain nonverbal.


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25 Oct 2021, 4:18 am

I think they perhaps took the 1/3 estimated in the booklet from the first paragraph of the paper:

"For example, a recent longitudinal study monitored speech development among 130 children with ASD from age 2 to 9 years who were not exclusively language delayed. They found that 24% of participants with autism and 59% with
pervasive developmental disorder not otherwise specified obtained fluent speech (ie, ability to use complex utterances to talk about topics outside of the immediate physical context) by age 9 years. In contrast, 30% of those with autism and 4% with pervasive developmental disorder not otherwise specified were termed nonverbal (ie, using no or few consistent words) by age 9."

The study cited links to https://psycnet.apa.org/doiLanding?doi=10.1037%2F0022-006X.75.4.594 which isn't open access so I'm not sure about that.

Anyway, the webpage states estimated 40% so I'm not sure where they got that from either.

But, unlike what CarlM assumed, they were not looking at people under age 4 and there is a substantial amount of people who are nonverbal (Mona said at least 15%, Autism Speaks estimates 40%, another paper reported to state 30%).



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25 Oct 2021, 6:26 am

It’s difficult to put a figure because what is called autism keeps changing.

The high functioning end keeps expanding first with aspies in 2013 with DSM 5, then older people picked up then self diagnosed looking for a label like celebs and people wanting some attention, sympathy and special treatment.

So it’s just basic maths the more you add at one end of scale in this case verbal the more the number or non verbal at the other end is watered down as a fraction.


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25 Oct 2021, 2:54 pm

While IQ isn't equivalent to verbal skills, they're often correlated (even if simply because IQ tests frequently underestimate nonverbal people's skills). So, it's relevant to note that an estimated 66-84% of autistic children have a tested IQ over 70.

http://abnormaldiversity.blogspot.com/2 ... e-low.html



carlos55
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26 Oct 2021, 1:29 am

Ettina wrote:
While IQ isn't equivalent to verbal skills, they're often correlated (even if simply because IQ tests frequently underestimate nonverbal people's skills). So, it's relevant to note that an estimated 66-84% of autistic children have a tested IQ over 70.

http://abnormaldiversity.blogspot.com/2 ... e-low.html


So this is your blog

1 in 3 autistic people have intellectual disability according to official stats

https://www.google.co.uk/amp/s/www.spec ... ulties/amp


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carlos55
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26 Oct 2021, 7:41 am

Following on :

From scientific link prev:-

https://www.cdc.gov/mmwr/volumes/67/ss/ss6706a1.htm

25% were in the borderline range (IQ 71–85), and 44% had IQ scores in the average to above average range

So according to official stats the majority of autistic people or 56 % - had below average IQ broken down into:-

25% - below average 71-85
31% - Intellectually disabled 70 or below

Leaving:-

44% - average or above on IQ


Quote:
Results: For 2014, the overall prevalence of ASD among the 11 ADDM sites was 16.8 per 1,000 (one in 59) children aged 8 years. Overall ASD prevalence estimates varied among sites, from 13.1–29.3 per 1,000 children aged 8 years. ASD prevalence estimates also varied by sex and race/ethnicity. Males were four times more likely than females to be identified with ASD. Prevalence estimates were higher for non-Hispanic white (henceforth, white) children compared with non-Hispanic black (henceforth, black) children, and both groups were more likely to be identified with ASD compared with Hispanic children. Among the nine sites with sufficient data on intellectual ability, 31% of children with ASD were classified in the range of intellectual disability (intelligence quotient [IQ] <70), 25% were in the borderline range (IQ 71–85), and 44% had IQ scores in the average to above average range (i.e., IQ >85). The distribution of intellectual ability varied by sex and race/ethnicity. Although mention of developmental concerns by age 36 months was documented for 85% of children with ASD, only 42% had a comprehensive evaluation on record by age 36 months. The median age of earliest known ASD diagnosis was 52 months and did not differ significantly by sex or race/ethnicity. For the targeted comparison of DSM-IV-TR and DSM-5 results, the number and characteristics of children meeting the newly operationalized DSM-5 case definition for ASD were similar to those meeting the DSM-IV-TR case definition, with DSM-IV-TR case counts exceeding DSM-5 counts by less than 5% and approximately 86% overlap between the two case definitions (kappa = 0.85).


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carlos55
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26 Oct 2021, 11:48 am

Ettina wrote:
While IQ isn't equivalent to verbal skills, they're often correlated (even if simply because IQ tests frequently underestimate nonverbal people's skills). So, it's relevant to note that an estimated 66-84% of autistic children have a tested IQ over 70.

http://abnormaldiversity.blogspot.com/2 ... e-low.html


Reading your blog post I’ve noticed you use average or mean figure as we say in the UK.

This is basically add up everything and divide by how many there are.

So for example 5 kids 4 with Serious ID an iq of 50 will be 200

1 kid with an iq of 150

All add up to 350 divide by 5 kids = average IQ 70 which is poor but somewhat functional

But it still gives a false representation of the facts.

The best way is to break things up into groups a bit like autism itself :D


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27 Oct 2021, 10:08 am

carlos55 wrote:
Ettina wrote:
While IQ isn't equivalent to verbal skills, they're often correlated (even if simply because IQ tests frequently underestimate nonverbal people's skills). So, it's relevant to note that an estimated 66-84% of autistic children have a tested IQ over 70.

http://abnormaldiversity.blogspot.com/2 ... e-low.html


Reading your blog post I’ve noticed you use average or mean figure as we say in the UK.

This is basically add up everything and divide by how many there are.

So for example 5 kids 4 with Serious ID an iq of 50 will be 200

1 kid with an iq of 150

All add up to 350 divide by 5 kids = average IQ 70 which is poor but somewhat functional

But it still gives a false representation of the facts.

The best way is to break things up into groups a bit like autism itself :D


I would recommend you read more carefully. You clearly didn't understand the statistics I cited very well at all.



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27 Oct 2021, 11:49 am

However, the study was looking only at 8 year olds. This is excluding the children, teenagers and adults diagnosed later. As many people on the 'less obvious' end of the spectrum are diagnosed later, often when they have a self-realization, or when they are stressed by puberty and the demands of post-primary schooling, the study is almost certainly biased towards those with a higher likelihood of having lower IQ scores.


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carlos55
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27 Oct 2021, 2:21 pm

Urselius wrote:
However, the study was looking only at 8 year olds. This is excluding the children, teenagers and adults diagnosed later. As many people on the 'less obvious' end of the spectrum are diagnosed later, often when they have a self-realization, or when they are stressed by puberty and the demands of post-primary schooling, the study is almost certainly biased towards those with a higher likelihood of having lower IQ scores.


It depends what picture you want to paint with stats. Back to the old saying lies damned lies and statistics.

The CDC figures I gave are the gold standard for 8-year-olds, its respected part of government, unbiased on medical / neurodiversity politics, it’s a large sample and the figures are grouped to give the best representation.

As mentioned, the studies Ettina gave were only a small sample, one strangely by a car company, I believe only showed part of the spectrum hf? and the baseline was 70 rather than 85 for the neurotypical normal is 85 – 115.

70 – 80 is still a very low score a person would barely be literate & able to function independently and would only be able to obtain janitor / unskilled level work.

Lastly giving a mean or average is a poor representation, Jeff Bezos a homeless man and myself go to lunch together our net average wealth is 64 billion each! not a good representation of how much the homeless man & myself are worth

You could take adult figures at 18, but that would exclude many ID autistic people who die early which many sadly do so what age would you take them 18, 30 or 40 since many people get diagnosed very late tend to be the most hf in IQ, the ID people die off early (the “average” life span of severe autism is 36), so one group excludes the other again giving a distorted picture.

You also get into the debate is aspergers really autism? should it be included?

Im sure IQ figures for autistic 50 year olds are normal / high since everyone else has mostly died off

This is maybe why they choose age 8


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carlos55
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27 Oct 2021, 3:44 pm

A couple of interesting links from reputable sources for older kids / adults but small samples:
156 children aged 10–14 years

https://www.cambridge.org/core/journals ... DD0BD1717B

Quote:
Of the 75 children with ASD, 55% had an intellectual disability (IQ<70) but only 16% had moderate to severe intellectual disability (IQ<50); 28% had average intelligence (115>IQ>85) but only 3% were of above average intelligence (IQ>115).


The take away here are worse IQ levels than CDC state on older kids with 55% ID below 70 IQ score and only 31% scored average – above average

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4876598/

Quote:
However, the results of this study suggest that the concept of delay may not be meaningful for children with ASD with the lowest scores, as children with NVIQ in the ID range by age 3 were unlikely to move out of that range by age 19. Similarly, individuals who scored in the average range or above by age 3 tended to receive scores in that range at age 19, although there was inter-individual variability. The greatest variability was observed for individuals in the borderline range: only 11% retained this designation at age 19 (about half moved into the average category; the remainder moved into the ID range).


One of the few studies of 19 year olds, very long to read but appears the takeaway those who started out as children with an IQ below 70 got worse by adulthood. Upper range stayed the same & mid range split in half ID / average (more accurate measurement i suspect)

So provides some evidence that childhood IQ scores remain rather constant in ASD through to adulthood maybe?


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