Adults, Autism and Scotland

10 May

I have been thinking recently how nice it is that the online autism community has moved on from the quarterly analyses of the CDDS data. For those who are blissfully unaware–the California Department of Developmental Services (CDDS) publishes statistics on the people it serves. They do this every three months.

These data are a favorite of people who would like to promote the idea of an autism ‘epidemic’. Mr. David Kirby has a book and enough power point slides for three debates which are filled with (mis)interpretations of these data.

For the past year or so, every three months the CDDS publishes the data followed by people stating, “The CDDS autism count has gone up, this proves there is an epidemic” and “the CDDS autism count has gone down, this proves the epidemic”. Both seemingly contradictory statements being made on the same dataset. These were quickly followed by multiple bloggers pointing out that the interpretations made were incorrect.

Three things happened that made for a break. (1) Mr. Kirby declared that he was moving on from autism, (2) the CDDS is on a break while they rework the way they compile the data and (3) A case was conceded in the Autism Omnibus which shifted the debate (and ended item (1)).

I was very happy to see the CDDS phase of the autism discussion end.

Then, much to my dismay, the same arguments started up again. This time it is data from Scotland, not the CDDS being misused. Otherwise, it is the same old arguments and the same bad analyses. Well…almost. Some new bad analyses have been added.

Mr. Kirby has a discussion of the Scottish data on another blog. Let’s avoid the conceptual mistakes (such as assuming that somehow everyone is properly identified and receiving services). Before we get to the real implications of this, let’s take a break and look at the math errors, shall we?

Mr Kirby takes this graph of data from the Scottish report:

And states:

Let’s look at the numbers. There are approximately 34,000 young people with autism in Scotland, born during the 16 years from 1987-2002. That is an average of 2,125 cases per birth cohort. But among older people, born during the 31 years between 1955 and 1986, there are only about 600 reported cases, or just over 19 cases a year.

Based on this, he has determined that if the true incidence of autism is constant, about 1 in 110 of the adults are missing from the count.

OK, go back and click on that image for me. I know you skipped over it, but, go take a look at the bigger version.

Did you see it? Yep, the number is not 34,000, but 3,400 adults with autism in the Scottish survey. A factor of 10. Don’t worry if you missed it. Mr Kirby (who spent some time ‘analyzing’ the data) and at least 20 people who responded to his post missed it too.

At this point, I can hear the screams of “So what, that’s just a small mistake. You are trying to distract us all from the big picture.” Because, in the end, even though Mr. Kirby is off by a factor of 10 and there aren’t 100 times more kids than adults receiving services with an autism label in Scotland, there is a roughly factor of 10 difference in the administrative prevalence of autism.

A factor of 10 is still big. I’d argue it’s huge. In fact, I’d scream right back at the people who are trying to use this for political gain.We can argue back and forth whether it’s real. But, consider some of the possibilities for the Scottish survey:

  1. the numbers are correct, all autistics are correctly counted.
  2. People are getting appropriate services, but some are under the wrong label (e.g. intellectual disability).
  3. Some people are getting the wrong services because of an incorrect label (e.g. schizophrenia).
  4. People who really should be getting services and supports are not getting any.

Let’s face it, if there’s a chance that people are getting the wrong services, we should be looking. And, yes, it is a very real possibility. Remember the big stink some people made when it was implied that some adults with the label of Schizophrenia might actually be autistic? Well, David Mandell is scheduled to talk about this at IMFAR this year in his paper: Evidence of autism in a psychiatrically hospitalized sample.

A £500,000 project to look for adults with Autism in the UK has been recently announced. To quote one of the researchers on this project:

“Adults with autism and Asperger’s syndrome are too often abandoned by services with their families left to struggle alone. Equally, people are frequently missaprorpriately referred to either mental health or learning disability services

“This study will inform the development of a national strategy designed to ensure that adults with autism and Asperger’s syndrome are supported to have full lives.”

“We still don’t know enough about autism, but we do know that left unsupported, it can have a devastating impact on those who have the condition and their families. One of the key gaps in our knowledge is simple – we don’t know how many people have the condition in any given area. That is why I am ordering a study to address this. “

It sounds like a really tough project. I don’t know if this study can really be accomplished. But, I have hopes that it could help improve the lives of adult autistics.

Now, as long as we brought up the Scottish survey, why not look at some of the details that were missed by others?

One question was how many of the individuals had “other behavioural or biomedical conditions?”. For the adults, this was 30% of the total. For the children, this was 3% of the total. Is this an indication that the kids being identified today actually have less severe symptoms than the adults? Even without that, only 1% have “other…biomedical conditions”?!? Where are all the kids with all the conditions like bowel problems that some groups claim define autism?

Another interesting fact from the survey is that over 50% of the children are in mainstream schools.

Yet another factoid: about 32% of the children in the survey have Asperger syndrome. Of those, half are listed as having ‘no learning disabilities’. For adults, only 14% are listed as having Asperger syndrome.

Surveys of those getting services are prone to a lot of errors–as has been discussed in the past for the CDDS data many times. So, these data should not be taken as hard epidemiological counts of the actual number of people in Scotland with autism. However, these data do not support the idea that the younger generation of autistics have greater challenges than the adults had to overcome.

I am actually glad that the subject came up of autism in Scotland. Why? Because in looking for some of these data, I found the website for the National Autistic Society Scotland. I particularly liked this page: I Exist: the message from adults with autism in Scotland.

For me, I have just finished a box of McVitie’s HobNobs while writing this. I don’t know if they are Scottish, but I love them. Perhaps I’ll open the other box to celebrate a study of adults with autism.

Additional

Sullivan’s catch of David’s maths error is good but I thought to myself as soon as I heard about this Scottish report that I’d heard about it before. I had. I blogged on this audit three years ago. One of the most fascinating aspects of the paper was when local authorities were asked for their opinions on 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?

The answers were very interesting. 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. For example:

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.

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

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

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

HIGHLAND
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.

LANARKSHIRE
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.

ORKNEY
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. The two really stand out quotes for me were:

There is low diagnosis for longstanding clients, whom workers are aware have autism as well as a learning disability……day centre managers locally consider a number of people to be on the spectrum who have had no formal diagnosis.

So as well as the excellent points Sullivan raised, I’d also like to ask how it is possible to place any kind of interpretation of the data when the fact that adult prevalence is grossly under-reported is so well established?

9 Responses to “Adults, Autism and Scotland”

  1. HCN May 10, 2008 at 08:43 #

    Excuse me, but I have an American teenager in my house who has never been diagnosed as autistic. Yet, in his last year of high school the school psychologist mentioned that he would now qualify as autistic with the NEW guidelines.

    The “new” guidelines is a key point. Many of the folks who have not lived through dealing with a disabled child (like Kirby or Olmsted), have no idea what a factor like “Guideline” or “diagnostic criteria” have in a parent seeking therapy and educational placements for a child who is not normal is like!

  2. HCN May 10, 2008 at 08:49 #

    For those who should know more about the historical aspects of diagnosing autistics a couple of reading suggestions:
    http://www.amazon.com/Not-Even-Wrong-Fathers-Journey/dp/1582344787

    and
    http://www.amazon.com/Unstrange-Minds-Remapping-World-Autism/dp/0465027644

    … For those who need a real life critique of the “I’ll do anything to help my child” therapy route:
    http://www.amazon.com/No-Time-Jello-Berneen-Bratt/dp/0914797565/

  3. Ms. Clark May 10, 2008 at 10:16 #

    A couple of days ago, Rick Rollens sent me a link to a website that says something about an autism pandemic. The graph that showed up in David Kirby’s blog (the one with 3,400 Scots ASD kids) was on that website. Rollens thought I might be impressed by the website with the word “pandemic” on it, I suppose. I suspect he might have sent the same link to Kirby, though it might have been circulating at the time among fans of the epidemic idea. At any rate, the web page seems to indicate that the graph came from a pdf file (the document that Kev quoted from, I believe), but that graph isn’t in that pdf. So I’m not sure who made the graph.

    I think the data are correct, even if I don’t know where the graph originated.

    The funny thing to me is that the 3,400 kids in Scotland are by definition supposed to represent a tragic and staggering number of kids. But it represents only 1 in 300 of all the kids of the same birth cohort in Scotland, if I have estimated correctly (I used official census data).

    The Scottish Society for Scotland shows on their website that they reckon that there are about 1 in 110 people in Scotland who are autistic.

    Click to access Figures.pdf

    That’s 1 in 110 80 year olds, 1 in 110 70 year olds, 1 in 110, 60-50-40-30-20 year olds.

    Surely it’s an estimate but that’s what they are using. They see a rate that is flat and exceedingly un-tsunami-like going back decades and they use the same rate to predict into the future how many ASD people they expect will be in Scotland, and with nary a trace of panic. Imagine that!
    http://www.autism-in-scotland.org.uk/

    They don’t seem to be interested in driving people away from vaccines, either.
    http://www.autism-in-scotland.org.uk/about/WhatisAutism.php

    Too bad it’s so far away. I think I might like to live in Scotland far from the maddening autism hysteria. I hear they make good biscuits.

  4. Joseph May 10, 2008 at 13:49 #

    That’s a good catch, Sullivan.

    Administrative adult counts need to be contrasted with research that exists on undiagnosed autism in adults. It’s quite naive of Kirby, at this stage in the debate, to continue to claim that administrative counts might be close to accurate.

  5. Joseph May 10, 2008 at 13:53 #

    Ah, I almost forgot. David Kirby has admitted in the past (perhaps unintentionally) that administrative counts can be underestimates:

    But the national autism rate within IDEA is only 25 per 10,000 among 3-5 year olds, far below the estimated rate of 60 per 10,000. Ohio has only 9 cases per 10,000, Puerto Rico just 7, and Oklahoma just 4 (about 1/20th the rate of Maine).

    Clearly, we need to let the diagnosing and reporting catch up before drawing any solid conclusions about autism,

    (source)

  6. Sullivan May 10, 2008 at 21:33 #

    Ms Clark–

    the word “pandemic” suggests to me that the email you received was pointing to the same place that Mr. Kirby got his information.

    To give Mr. Kirby his due, he did not take the same language of that site. In specific, “pandemic” wasn’t mentioned. Neither was the discussion that “these adults simply do not exist” when discussing the uncounted adults with autism.

    And, yes, the Scots do make good biscuits. However, I skipped the McVities Hobnobs this time in favor of Pocky: (http://en.wikipedia.org/wiki/Pocky)

  7. Ms. Clark May 10, 2008 at 23:46 #

    This is roughly what the graph would have looked like had it really indicated that there were 34,000 Scots kids with an ASD as found in that survey (instead of 3,400). Some people seem to lack a sense of proportion. :-/

  8. Ms. Clark May 12, 2008 at 02:40 #

    Did David Kirby change the numbers on the Huffpoof blog after reading Sullivan’s article here? The numbers are still wrong on that other blog with a slightly different version of Kirby’s huffpoof article.

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