David Kirby on Autism in Scotland
Autism in Scotland
Scotland has a population of just over 5 million people. In 2004 The Scottish Executive published the Audit of Services for Autistic People Statistical Report. This was the result of a questionnaire sent out to all local authority/National Health Service partnerships. Two areas, Borders and Western Isles failed to respond and were excluded from the subsequent ananlysis of results. As a consequence the Audit deals with a total population of approximately 4.9 million people.
The Audit found 3412 children and young people under 18 with a diagnosis of an autistic spectrum disorder. The Audit could only find 645 adults with a diagnosis of an autistic spectrum disorder. This finding has been taken as further proof of a putative autism epidemic by journalist David Kirby writing for The Age of Autism. Unfortunately for Kirby, he obviously has not read the report in question. Instead he offers
Many thanks to Clifford Miller for furnishing the Scottish audit data.
Miller also furnished this graph which Kirby faithfully reproduces.
A misleading source
It looks like a figure taken from the Audit. But this figure is not in the PDF version that Miller links to. Nor is it in the word.doc that I have read. The clue is in those weasel words at the top of the figure, “Data Source.” Yes, Miller invented the figure based upon data gleaned from the audit. This would matter less if it was an accurate representation of the data source. But it is not. If we start at the bottom with “Average age of diagnosis of autism - approx three,” Average age of diagnosis is nowhere mentioned in the Audit. Furthermore, the Audit only contains data on people aged 3 years and older. So is Miller claiming that everyone in Scotland was diagnosed around their third birthday? How does he explain Howlin and Moore [1997] who found a mean age of 5.69 years for diagnosis in Scotland?
Miller’s second innovation is to give us four age groups: those born up to 1954, and those born in 15 year birth cohorts: 1955 - 1970, 1971 - 1986, 1987 - 2002. These are not the age groups in the data source. The Audit does not refer to date of birth. It refers to adults over 50, adults aged 25 to 49, adults aged 18 to 24 and children aged 3 to 18. As 18 is the legal age of majority in Scotland I am going to assume they mean “up to but not including 18″ when they refer to children. Of the birth dates you can derive from these ages: up to 1954, 1955 -1979, 1980 - 1986, 1987 - 2001, only the over 50s group matches.
Miller is also dishonest when he compares adults to children in the same graph. Data for children is derived from the responses of 13 NHS boards. Only 10 NHS boards provided adult data. Those missing are
Ayrshire and Arran - population 376,000
Forth Valley - population 300,000
Greater Glasgow - population 1,200,000.
So the figures for adults are based on a population of approximately 3 million rather 5 mllion. They exclude Glasgow, the most densely populated urban area in Scotland. None of this matters to Miller. He believes there is a world epidemic of autism in children, a pandemic that is caused by “vaccines.” He does not specify which vaccines, or which components or how they might be acting to cause his pandemic. He argues that if there is no pandemic there ought to be 500,000 autistic adults requiring 24/7 care in the UK. This is plain silly. Never mind that we are talking about a spectrum of need, where most autistic adults do not require 24/7 care. If Miller were right there ought to be 133,500 autistic children requiring 24/7 care in the UK. Some do require constant care but most clearly do not.
A tenfold error
So much for Kirby’s source. What does Kirby make of this material? It turns out that he makes a complete pig’s ear of it.
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.
If the rate of autism in Scotland had remained unchanged between 1955 and today, then there are many, many uncounted adults going without support, services, or even much recognition.
In fact, at 2,125 cases on average per year, there should be 65,875 people with autism in Scotland between the ages of 22 and 53 years alone. But only 600 have signed up for any help at all, in a country with universal healthcare, no less.Which begs a few questions: Where are the other 65,275 people in that age group with autism? Why have 109 out of every 110 adults with autism never sought, nor received, any special attention for their particular needs? Why have they not been counted? And why is there no national outrage over the neglect of so many thousands of fellow citizens going without services that they need?
In a country the size of Maine, with a population much smaller than New York City, it seems that the government would be able to locate and help these people.
Unless, of course, some of them are not there.
These figures are hogwash. Kirby may be able to use a calculator but he cannot read a graph. The figure is 3,400 not 34,000. Incredibly this post has been up for over a week now and nobody seems to have spotted such an egregious error, neither managing editor Kim Stagliano, nor editor Dan Olmsted and certainly not Kirby himself. And none of his supporters has posted a correction in the comments section, not even Barbara Fishkin who commented,
David
Thank you for this. Such piercing information. We won’t know what to do with our kids with autism as they age because THERE IS NO PRECEDENT. There never were kids afflicted like this before, in these numbers. We had better start preparing to make life work for our kids as they get older! Barbara
Comment by abfh | May 11th, 2008
Good job shredding David Kirby. I’m surprised that anyone continues to take that nincompoop seriously.
Why have 1 out of every 11 adults with autism never sought, nor received, any special attention for their particular needs?
Yet another careless edit by Kirby; that should have been 10 of 11. And the answer is very obvious — it’s because that “special attention” all too often consists of discrimination and exclusion.
Comment by Joseph | May 11th, 2008
The naive math is one thing, and it’s forgivable really. This is not the first such mistake by DK. But this naive thinking about adult autistics not being there because they aren’t classified as autistic in some dataset is completely unbearable. I would’ve thought we got past that point in autism discussion a while back.
Just to be clear, I’m not in a dataset, and many autistic adults I know of are not in a dataset either. Many autistics are in a dataset, but they do not appear there as “autistic” - there’s clear evidence of this.
Comment by kristina | May 11th, 2008
Thanks for the analysis — and further evidence of the fiction-writing going on at AOA.
Comment by Mike | May 11th, 2008
Oops! I missed that one abfh. I wonder what the press will make of him when he visits England in June courtesy of Generation Rescue?
Joseph, is it naive thinking or cynicism?
Kristina, hi. I do not comment often but there are some good things hapening over at AutismVox.
Comment by Ms. Clark | May 11th, 2008
I was under the impression that the article on Huffpoof originally had the 34,000 number. Did he change it after Sullivan’s article went up on the LB/RB blog?
I tried to comment on Huffpoof on Kirby’s disastrous Scotland blog after it had been up for about 24 hours, but Huffpoof won’t let me comment. Arianna et al don’t like to be criticized and so shut the mouths of their critics, apparently. I remember the Huffpoof version as having 10x larger numbers.
Comment by Joseph | May 11th, 2008
A while back when David Kirby wrote a couple of analyses of IDEA data, and I wrote corresponding critiques, simply posting links to my critiques in the comment sections of DK’s entries was not allowed by Huffpo. I don’t even try anymore, but it was disappointing to learn how Huffpo works.
Comment by Mike | May 11th, 2008
I have been busy recently and missed Sullivan’s article. Thanks for pointing it out.
Comment by jypsy | May 11th, 2008
cached version - http://72.14.205.104/search?q=cache:s_jIhjdHws8J:www.huffingtonpost.com/david-kirby/us-medicine-97-of-all-aut_b_100821.html+http://www.huffingtonpost.com/david-kirby/us-medicine-97-of-all-aut_b_100821.html&hl=en&ct=clnk&cd=1&gl=ca&client=firefox-a says “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.”
Comment by Matt | May 12th, 2008
“Why have 1 out of every 11 adults with autism never sought, nor received, any special attention for their particular needs?”
Good catch that this should have been “10 out of every 11″.
The bigger problem is conceptual rather than arithmatic.
Mr Kirby assumes that just because a person with autism is not seeking services *under the label of autism*, that person is not seeking services at all.
Just like Mr. Kirby, I’d bet a billion pounds. But, I would bet a billion pounds that there are a lot of adult autistics in Scotland who are receiving services under a different criterion than ‘autism’.
Comment by Mike | May 12th, 2008
Please see my edit to the footnote on Kirby and HuffPo. apparently he is just as disrespectful of their readers as he is of those on AoA. And apologies to Jypsy for spending some time in my spam filter. It must have been the extra long link in your post.
Comment by Clifford G. Miller | May 12th, 2008
Dear Mike Stanton,
Thank you for claiming I am a liar in your blog piece: David Kirby on Autism in Scotland http://actionforautism.co.uk/2008/05/11/david-kirby-on-autism-in-scotland/
Strangely you wrote, entirely falsely, that I am responsible for the claims which are made not by me but by the National Autistic Society. That is your own organisation. I am grateful for your support in confirming the NAS’ claims to there being 500,000 adults. I entirely agree with you.
Confusingly, you falsely claim about me:-
“He argues that if there is no pandemic there ought to be 500,000 autistic adults requiring 24/7 care in the UK. This is plain silly. Never mind that we are talking about a spectrum of need, where most autistic adults do not require 24/7 care. If Miller were right there ought to be 133,500 autistic children requiring 24/7 care in the UK. Some do require constant care but most clearly do not.”
I could not have made the position plainer. It is the NAS which makes those claims and I say they are nonsense. See:-
Shame of UK’s National Autistic Society
http://homepage.ntlworld.com/clifford.g.miller/pandemic.htm#National_Autistic_Society_in_Denial
Borat’s Cousin Hired in British Government’s Desperate Bid to Find Adult Autistics
http://homepage.ntlworld.com/clifford.g.miller/pandemic.htm#Borats_Cousin_Hired
Here we can see here this NAS sponsored story in the national press as part of the NAS’ publicity last week:-
“A life of constant caring” - May 4, 2008 - Charlotte Moore - The Sunday Times
“Autistic children grow up into autistic adults – and they still need looking after 24/7″
But you falsely accuse me of making these claims when it is you and your organisation which are making or promoting them.
So Mr Stanton, you have a dilemma. Who is not telling the truth?
Which way do you want to jump now? Are you going to support the NAS with their “I Exist” campaign in full swing and support them in claiming there are 500,000 autistic adults? Or are you going to maintain that is complete nonsense, and “plain silly” as you say? Which one of you is telling the truth and which one of you is not? These are your own organisation’s claims.
Do you agree there is no pandemic of autism and the numbers have been the same since Kanner and 1943? Or do you agree there is a problem and we are seeing many more new cases with an increased incidence?
You meet fact with personal attacks and disingenous writing. Your blog is of the same calibre of others in this arena. You claim I am “dishonest”; that I have invented figures and that I have no credibility. Methinks that is treading on thin ice. It is especially so when what you say is also neither true, nor justified nor fair comment.
Your comments on the Scottish Autism Audit are regrettably plainly and simply tosh. You have nothing substantive to say on the matter and your comments are irrelevant. The graph ably demonstrates the position from the data in the official report. The Scottish authorities have scant figures on adult autistics because autism has never been the problem it is now. But then, the NAS has to claim the problem has always been the same and that you are wrong. So which are you? An autism pandemic denialist like the NAS or an autism pandemic realist, in line with the data?
Sincerely,
Clifford Miller
EDIT:
I think this comment speaks for itself. Any attempt to debate with its author would be futile. The stupid, it truly burns.
Comment by cyberseraphim | May 13th, 2008
Hi - Great article - yours I mean, not the one about adult autistics ‘missing’ in Scotland. I live in Glasgow, my brother who is HFA was never diagnosed, a friend has an adult autistic son who was diagnosed as mentally retarded. But boring facts like that don’t seem to matter to vaccine obsessives. It is a lot easier to distract my ASD son from his obsessions!
Comment by RAJ | May 13th, 2008
Epidemiological studies in chasing the reasons for the ‘autism epidemic’ and the correlated observation regarding the absence of adults diagnosed with autism is a futile excercise in searching for the Holy Grail. There is no autism epidemic, it is a myth caused by changing concepts of what ‘autism’ is.
In 1987 the concept of autism changed when the core defining feature, Kanner’s ‘indifference to the existence of people’, was relegated to one of five items listed in DSM-III-R. In 1994 DSM-IV and ICD-10 both entirely removed Kanner’s definition. All the autism diagnostic tools (ADI-R, ADOS, Autism Qoutient Test) since then have taken the same definition, often expanding the number of items on the checklists.
The removal of Kanner’s criteria and its replacement by the vague, ambigous and subjective ‘Qualitative impairments in social reciprocity’ is what has led to the epidemic.
Kanner published a paper in 1965 explaining how an apparent ‘autism epidemic’ was observed in the 1950’s a decade after his original paper was published.
http://neurodiversity.com/library_kanner_1965.html
It can be reasonably argued that none of the isolated symptoms in all of the Gold Standard checklists are actually specific to autism as it was defined prior to 1987, which by the way, is the exact year when the so-called autism epidemic began. They are isolated symptoms found frequently in all other neurologically impaired population.
Kanner’s observations in 1965 on the first autism epidemic are spot on and are completly relevant to the curren debate on autism prevelance.
Comment by Sigma | May 14th, 2008
So, once again, you have proven that Kirby is a bonehead when it comes to math. I believe that I proved the same (of others) in the past.
The increase is only 10 times instead of 100. That still begs the question, where are the 6,000 adults (compared to the 600 that need services)?
There is no doubt that the expanded definition, greater awareness and better diagnosis come into play; but without the apples-to-apples comparison, it is difficult to make a real comparison.
I will offer up one observation for the AS writers on this site. It seems to me that AS parents are giving birth to children that now qualify for PDD-NOS or Kanner’s while more-and-more NT parents (without a clear genetic link to ASD) are giving birth to ASD kids. That’s a raw observation, not a fact so excuse me for my lack of science. My gut feeling is that many bloggers have AS while their children are more severely affected than they were.
I am curious as to whether AS parents see more severe autism signs in their children.
Comment by cyberseaphim | May 14th, 2008
Hi I have AS tendencies but it’s too early to say how severely affected my son is . My brother has HFA and his son is NT. I don’t think (though I’m no expert) that a familial genetic link is needed - it could be a ‘de novo’ genetic mutation that arises for the first time in that generation and may be passed recessively by females which might account for why a woman with one ASD son has a high risk of a second son with ASD but with no familial genetic link
Comment by Mike | May 14th, 2008
Sigma,
rather than speculate, let us await the outcome of research into autism in adults. Past research suggests that whenever we set out to look for autism, either in children or adults, we find many missing cases who were either misdiagnosed or missed completely by service providers.
Comment by Sigma | May 15th, 2008
Mike,
I think speculation will continue to be with us for many years. Personally, I think ASD has become like cancer. We are lumping too many things with similar characteristics together. Their origin and impact is different. There is no doubt UNDER counting of ASD in the past, but I also think that there may be OVER counting in the present. That’s why some kids “recover.”
I continue to believe that a significant percentage of so called AS individuals should not be considered to be “on the spectrum.” I don’t consider a difference in personality to be a “lifelong pervasive” disability. If I had to choose between strengths & weaknesses and being average, I would choose the former.
I was simply curious as to whether AS parents see more severe ASD signs in their children. That’s a yes-or-no question.
Comment by Joseph | May 16th, 2008
It seems to me that AS parents are giving birth to children that now qualify for PDD-NOS or Kanner’s while more-and-more NT parents (without a clear genetic link to ASD) are giving birth to ASD kids. That’s a raw observation, not a fact so excuse me for my lack of science. My gut feeling is that many bloggers have AS while their children are more severely affected than they were.
Sigma: Assuming this is true, and it is plausibly true, it’s one of those things that has quite an obvious reason in retrospect.
If you were to sample all autistics who happen to also be married and have children, would you expect the sample to be composed of mostly high functioning autistics or mostly low functioning autistics? I’d guess high functioning.
So is it surprising that high functioning parents are having low functioning kids, and not the other way around? My opinion is ‘no’.
Now, of course, you’re also making the flawed assumption that those autistics now considered high functioning adults were also high functioning children. From various adult outcome studies, it is well known this isn’t always the case.
Comment by Sigma | May 16th, 2008
I agree with you that HFA’s are more likely to be married and have childen. There is no doubt that their offspring have a much higher chance of landing on the spectrum somewhere - high or low. Their children are more likely to display the entire spectrum depending on their mate and the genes passed by the HFA parent. The question is whether their children are on the spectrum solely based on genetics or does the environment or bio-chemistry play some role?
Quite frankly, I see ASD signs in most of the autism bloggers including the mercury militia. Some of the biggest anti-vaccine supporters most likely fit the broader phenotype for ASD (if not an ourright Asperger’s diagnosis) like Jenny McCarthy or Kim Stagliano.
Comment by Joseph | May 16th, 2008
The question is whether their children are on the spectrum solely based on genetics or does the environment or bio-chemistry play some role?
The way I view this question is the same as the way I would view the following question:
“Is the degree to which the children of neurotypicals are unlike their parents solely the result of genetics or does the environment or bio-chemistry play some role?”
I think the answer is basically yes
Comment by Sigma | May 17th, 2008
Joseph, I think you meant “like.”
However, my original query was whether or not the children of AS parents displayed more severe signs of autism (on average) than they do. It seems to me that a lot of AS bloggers (diagnosed or not) have children that are more clearly autistic.
The old adage that “the apple doesn’t fall far from the tree” applies. However, if the apple falls disproportionately on one side of the tree then we should ask why. Perhaps, it’s the wind (environment).
Comment by Mike | May 17th, 2008
Sigma
it seems to me that your argument depends upon an awful lot of suppositions.
1. You suppose that a lot of us bloggers are AS.
2. You suppose that our children are more autistic than we are.
3. You suppose that this is significant.
You do not offer any data to support your suppositions. Instead you invite us to provide anecdotal evidence for your hypothesis which is severely lacking in support from any real data. It is not serious and neither are you if you continue to argue in this way.
Comment by Joseph | May 19th, 2008
Sigma’s speculation is nevertheless somewhat interesting scientifically. I don’t think you even need to consider ASD as part of it. Simply consider the set of all persons who are parents, and the set of all persons who are their children. Without taking into account anything else, the set of all parents will be made up of persons who more consistently have reproductive fitness compared to the set of all children. The set of children will be a lot more heterogeneous. This is obvious if you think about it. Not everyone gets to reproduce, especially in societies with a fairly constant population size.
Another way to look at it is that the set of children will be a lot like the set of all adults, married and unmarried, within a generation. This group is different to the group of only adults who have children.
In other words, the speculation doesn’t help us determine anything about the prevalence of cognitive disability. We arrive at a tautology.
Comment by Sigma | May 20th, 2008
Mike, it wasn’t an argument. It was an unscientific observation.