Where Are All The Adult Autistics?

5 Oct

Anyone remember David Kirby?

Citizen Cain who had a dialogue going with Kirby for awhile probably does. Unfortunately, since CC showed Kirby how wrong he was Kirby’s gone very very quiet on that front.

One of the big – if not the biggest – dependencies that the whole autism = thiomersal poisoning rests on is the existence of the so-called ‘autism epidemic’. Without the ‘epidemic’ there is no rise in prevalence and without a rise in prevalence there is no mystery surrounding the causes of autism. In fact, if there’s no epidemic then this refutes the idea that thiomersal causes autism as the amount of thiomersal (before its removal) in vaccines rose sharply. Without a corresponding ‘epidemic’ the whole shebang is dead in the water.

One of the key points then become the existence of adults on the spectrum. If they exist in large numbers then there can be no real rise in prevalence and hence no epidemic. As David Kirby himself said:

When it comes to autism, here is one of the key questions we should be asking: if autism…..has always been prevalent at the same constant rate, then where are the 1-in-166 autistic 25-year-olds (those born in 1980)? Where are the 1-in-166 autistic 55-year-olds? Why can’t we find them?

David Kirby

Firstly, lets note that the 1 in 166 figure is in hot dispute and based on the California DDS numbers which California themselves say are not reliable for tracking autism prevalence (see Citizen Cain link above).

The big problem with answering Kirby’s question is that these people are not tracked and recorded accurately – or at all in some places. However, thats not the point. Kirby is saying they don’t exist in high enough numbers. Whilst its impossible to prove or disprove that exact point its easy to demonstrate that there are a _lot_ of adult autistics.

A 2004 audit on ASD in Scotland tried to present on overall report on the ‘state of ASD knowledge’ in Scotland. Most striking to me as I read the report was the comments that each local authority/NHS partnership had regarding an answer to the following question:

Research tells us that prevalence rates of autistic spectrum disorder represent an underestimate. To what extent do you consider the numbers above to be an accurate reflection of all those who live in your area?

Argyll & Bute Council
It is believed that the figures represent a significant under-representation of those with ASD in Argyll and Bute. This was thought to be due to a historical under-diagnosis and the absence of clearly defined referral pathways and multi-agency assessment processes for adults.

East Renfrewshire Council, NHS A&C and Greater Glasgow NHS
…as a result of changing patterns of diagnosis over recent years there are likely to be substantial numbers of adults with ASD who are not known to services and are not diagnosed as having ASDs.

It is apparent that information collection and collation for adults is almost non existent.

There is little doubt that this number is far short of the actual number of adults in Dumfries & Galloway with ASD.

There is low diagnosis for longstanding clients, whom workers are aware have autism as well as a learning disability.

It is believed that these figures comprise a significant underestimate due to the lack of a diagnostic process particularly for adults. It is believed that the figures for younger children are accurate due to the development of diagnostic tools for children are accurate due to the development of diagnostic tools for children and the establishment of multi-disciplinary partnerships which include education.

The estimated numbers provided for the pre-school and primary school ages are thought to be a reasonably accurate reflection of the true picture. However the estimated number of secondary school children is less accurate and the estimated number of adults with ASD is likely to be a considerable underestimate of the true prevalence.

Figures for children are an accurate representation of needs. One or two children may yet be diagnosed. Figures for adults are under estimated as diagnosis has not been made and access to specialists is variable.

Perth & Kinross Council
Figures for adults reflect the national findings that the numbers known to services/diagnosed represent a significant underestimate of those individuals likely to be affected. For example day centre managers locally consider a number of people to be on the spectrum who have had no formal diagnosis.

Pretty interesting stuff I think you’ll agree. This means that about 45% of the areas questioned said that the prevalence for adults was grossly underestimated, badly reported and that a lot of these adults exist without diagnosis.

A secondary question also of note asked:

What changes are there in demand in the last 5 years? Are there increased numbers? If so, what do you attribute this to?

Just about every area reported an increase and all areas attributed to either, reclassification of some people (especially adults) from Learning Difficulties to ASD, increased awareness of ASD generally and in medical circles and improved diagnosis. Perhaps the most amusing answer came from whomever compiled the reports for Shetland who said:

Demand for diagnosis, therapy, respite and alternative treatments. Any increase in numbers is attributed to jungle/grape vine, internet, parent support group and media.

Maybe David Kirby should pack the second revised draft of Evidence of Harm into his Sporran and come and find some decent research. That would make a nice change for him.

6 Responses to “Where Are All The Adult Autistics?”

  1. JP October 5, 2005 at 21:08 #

    Helps bring those poor newbies into the offices of DAN! doctors and lawyers.

    Let’s be clear. That’s what a ton of this is about – maybe not for some of the grunts on the front line who believe, mind you. They’re doing this because they truly feel that thimerosal is the reason their kids have autism.

    However, I’d suggest that some of the principals involved have far more spurious motives. That doesn’t mean they don’t believe, but they also understand that publicity=$$$.

  2. David N. Andrews BA-status, PgCertSpEd (pending) October 7, 2005 at 12:12 #

    Where’s all the adult autistics? Here’s one!

  3. bonni October 9, 2005 at 16:16 #

    Look in any computer science department in any university and you’re bound to find plenty. Also check the engineering department and, interestingly, animal medicine. All of those fields have a high percentage of autistics in them.

  4. El Juno October 10, 2005 at 14:29 #

    Here’s another adult autistic (if you’ll count 22 as ‘adult’). And I was diagnosed at 19 after spending the better part of my early life seeing neurologist and psychologist after neurologist and psychologist.

    ‘Cause, y’see, it was obvious to anyone that looked at me that I had something wrong, I just wasn’t diagnosed until Aspergers hit the books (ironically, I’m not even Asperger’s, even though that was my first autism-related diagnosis…when they found out I was slow to talk, I got changed) So, I’m also one of those that got shuffled from generalised ‘learning disabilities’ to Autism.

    (Also, I’ve been tested for heavy metal poisoning. Three times in my life. This is what you get into when you don’t have an explanation for an obvious disability. And guess who’s clean on THAT much…)

  5. Lori October 21, 2005 at 16:45 #

    I am another adult autistic who was not diagnosed until well into adulthood, even though ‘symptoms’ have been apparent since around birth. As a child, I was labeled as antisocial and it was assumed that all my difficulties were due to my ‘refusal’ to fit into the social norm. As an adult, I went through 20 years of misdiagnosis before finally ‘stumbling onto’ autism at 38. The kicker? My doctor said she already knew! She just never mentioned it to me because the meds were the same as for my previous diagnosis. I am sure that the ‘autism epidemic’ is actually an ‘autism diagnosis epidemic’ due to an ever increasing awareness of and knowledge about autism by both professionals and the general public.

  6. nick h November 5, 2005 at 06:05 #

    My young (aged 5) son was recently diagnosed with asd but as yet I have yet to meet any adult autistics . However my mum says that my son’s behaviuors remind her of her cousin leslie and she wonders if he was in fact autistic especially when we she knew him as an adult . My mum will be 80 next year so we are not talking of recent times .
    He was not diagnosed with asd but mum is convinced that he was in fact autistic , I therefore would agree with lori’s comment above

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