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Professor Simon Baron Cohen endorses Neurodiversity

16 Dec

Neurodiversity, that much misunderstood, much maligned concept has been dragged through the mud for years by people determined to misunderstand it and misrepresent it. We all know who these people are.

However, it also has its supporters and people determined to understand it on either a social or personal level. One such person is Professor Simon Baron-Cohen.

In an interview with the Encyclopaedia Britannica blog Professor Baron-Cohen was asked:

Individuals with Asperger syndrome often use the term “neurotypical” to describe normal people, and in an effort to lessen the stigmatization associated with autism as a medical condition, the Asperger community has initiated the so-called neurodiversity movement. Can you briefly describe the neurodiversity movement and its implications on the diagnosis of autism spectrum conditions?

To which he replied:

The neurodiversity movement has been a very positive influence in reminding us that there is no single pathway in neurological development, but there are many ways to reach similar end-points.

Stigmatizing anyone, whether they have autism or any other characteristic, is wrong, since the point about these labels is not to pick out the person in order to make their lives worse, but to help others understand their special needs and qualities.

How nice to see a researcher who _gets_ it.

Autism Epidemic Talk

20 Jan

A couple of slap dash blog pieces appeared today both on the same subject – the so called autism epidemic. First off is Harold who writes about a series of interviews with David Kirby. David says:

<blockquote>It’s crazy that in this debate, we’re still debating whether autism numbers are actually going up or not, which is insanity to me. It’s people desperately clinging to this belief that autism is genetic, that it’s always been with us at this rate, that we’re just better at counting it, better at diagnosing it.</blockquote>

Harold claims David has ‘hit the nail on the head’ with this quote. I disagree with Harold and I disagree with David. Its far from insanity to examine a perfectly valid hypothesis. More later.

Anne Dachel at the Age of Autism writes :

<blockquote>Why do I personally know so many young people with severe autism, whose symptoms can’t be ignored?  How could we have just ignored these people in the past?  Where are those misdiagnosed adults with classic autism—those with the same symptoms we see in so many children today?

I’m not talking about [Kristina] Chew’s autistic neighbor who was able to have a conversation with her, or [Paul] Offit’s people who are kind of ‘quirky.’  I mean adults who can’t talk, those in diapers, people who scream for hours and pound hours in walls and who constantly rock back and forth.</blockquote>

Dachel goes on to list several news reports which question the idea of there not being some kind of an epidemic. I disagree with her view and I disagree with the way she has reached her view.

Both Dachel and Harold (and David Kirby come to that) are claiming that epidemiology can be ursurped by individual experience – Dachel’s individual experience with ‘so many young people’ and David’s individual experience with the idea that people are desperately clinging on to some sort of belief in a genetic form of autism.

Now, casting aside the fact that the some of the forms of autism that we know about (Rett Syndrome etc) _are_ solely genetic we have to – as we do with _all_ forms of science, cast aside personal anecdote when making sweeping statements about a very large group of people. What we need to do instead is look at the science. So what does the science say?

Nothing. As far as I can see no firm case has been made that there either is or is not an autism epidemic. Why? Because the science hasn’t been done. It is maybe worth noting that it is the firm opinion of autism experts that a large part of any possible rise is due to:

a) Better diagnostic tools

b) More places at which to recieve a diagnosis

c) More awareness amongst clinicians of autism

d) Earlier diagnosis

e) Diagnostic substitution

f) Widening of diagnostic criteria

Experts such as Eric Fombonne, Roy Richard Grinker and Simon Baron-Cohen have all spoken about these ideas at length. However, that doesn’t make them right. There still seems to be no hard and fast science that says there is an autism epidemic or not.

Autism and gender identity

16 Jun

Two abstracts from IMFAR (the International Meeting for Autism Research) caught my eye as they discussed an area I haven’t seen discussed much (if at all): gender identity and autism.

The 2008 paper was from the Autism Research Centre (ARC), R.M. Jones first author, and Simon Baron-Cohen‘s group:

Female-to-male transsexuals and autistic traits.

The second paper had first author I. L. J. Noens ( Katholieke Universiteit Leuven) with collaborators from the Netherlands.

Co-Occurrence of Autism Spectrum Disorders in Individuals with Gender Dysphoria

It isn’t surprising that the ARC paper was looking for support for the Extreme Male Brain theory of autism. They tested transsexuals, female-to-male and male-to-female, “typical” [edit: typical is their term in the abstract] males and females and people with Asperger syndrome. They used the Autism Quotient test. What they found was that male-to-female transexuals and “typical” males and females scored about the same. Female-to-male transexuals scored significantly higher than these groups in AQ, but significantly lower than people with Asperger syndrome. The concluding sentences in the abstract stated:

We speculate that these biological females, being masculinized in their autistic traits, may have had difficulties socializing with a female peer group and therefore found it easier to identify with a male peer group. This research illustrates how carefully selected groups in the population (e.g., congenital adrenal hyperplasia) can inform the extreme male brain (EMB) theory of autism.

I think this speculation is just that–speculation. I am not really comfortable with the speculation either. However, the idea of studying gender identity and autism stayed with me. So, I was very interested when I saw the abstract for the Noens study in the 2009 IMFAR abstracts.

Noens et al. took a different approach. They tested people for autism who were referred to the Amsterdam Gender Identity Clinic.

From April 2004 to December 2007, all children and adolescents referred to the Amsterdam Gender Identity Clinic were screened for ASD features.

Their preliminary results?

Preliminary results indicate that at least 6 % of the 233 referred children and adolescents has an ASD. This percentage remains almost the same for the referrals with a confirmed Gender Idenity Disorder (GID) or Gender Identity Disorder-Not Otherwise Specified (GID-NOS) diagnosis. The group of individuals with ASD and GID (seven adults included) is heterogeneous in various respects: sex (both male and female), GID classification (GID, GID-NOS, transvestic fetishism), ASD classification (AD, Asperger syndrome, PDD-NOS), age of onset of GID (before or after puberty), and developmental trajectory (cross-sex behavior temporary or persistent).

Pretty interesting, if you ask me. 6% of people referred to the clinic had an ASD. Unlike the results from the ARC group, there appears to be similarity in the male and female subgroups.

6%–about 6x the prevalence of autism in the general public. That is worth following up on.

There is, of course, another study one could consider: how many people with ASD’s have GID’s?

Note: I hope I have treated gender identity with respect. If I have made any disrepectful comments, I would welcome suggestions for correction.

New autism prevalence 1.5% in UK

31 May

A new study published (officially) tomorrow discusses ‘Prevalence of autism-spectrum conditions: UK school-based population study’.

Its an interesting study for quite a few reasons. Firstly, it offers a new autism prevalence of 1.5% (1 in 66). That’s the message that the press will no doubt focus on (and, as Kristina blogs, already have). And I’ve absolutely no doubt that our friends from JABS, Age of Autism and various other anti-vaccine fringe groups will be painting this as part of their ‘evidence’ that we’re in the throes of a massive autism ‘epidemic’.

However, the paper itself is very nuanced and is clear in its messages. However, to be absolutely sure I was correct in the conclusions I drew I had an email conversation with Professor Baron-Cohen before writing this entry.

Point 1: This study confirms the baseline rate of 1% as asserted by the Baird et al paper

Baird et al (2006) asserted that their findings would offer a baseline rate of autism prevalence, that prevalence being 1%. This figure was ascertained by looking at a SEN population of a South Thames cohort. Baron-Cohen et al (2009) confirmed that figure:

These authors took the decision to screen only the ‘at-risk’ population and assert that their estimate should be regarded as the minimum figure. Our results from screening the entire school-aged population support this assertion…

In other words Baron-Cohen et al also looked at the ‘at risk’ population and also found a prevalence of 1%.

Point 2: Baron-Cohen et al identify a further 0.5% to make a total prevalence of 1.5%

What is different about the Baron-Cohen paper is that as well as looking at the ‘at risk’ group they _also_ looked at mainstream schools. Using the CAST screening tool, this study identified a previously unknown prevalence of 0.5% within this mainstream environment.

Our results from screening the entire school-aged population…highlights the reality that there are children with autism- spectrum conditions, notably children with high-functioning autism, who remain undetected in primary schools. These children may use strategies to mask their social and communication difficulties such as going to the computer room at playtime. They may be quiet and cooperative at school and not difficult to manage and therefore teachers may not be aware that they have difficulties. Primary schools in the UK are typically small and foster a supportive and nurturing environment. It may not be until these children move to secondary school that their true differences are revealed.

Often I have heard people asking how it is possible that people with autism could possibly be missed. The Baron-Cohen et al paper gives a graphic answer to that question.

Point 3: Caution should be applied in assuming that results ascertained in Cambridgeshire could be applied across the rest of the country

The area is very affluent within the UK and has excellent autism resources for autistic children. It is a given that many families have moved into the area to try and exploit those services. This would have a positive effect on prevalence that is not consistent with the majority of the UK.

Our study does not report on migration of families but given the level of services for and awareness of autism-spectrum conditions in Cambridgeshire, this remains a distinct possibility. Caution should therefore be employed in assuming that the figures reported here can be applied nationwide.

Professor Baron-Cohen and I had the following exchange about the autism ‘epidemic’:

KL: What would you say to someone who says that your paper is strong evidence of an ‘autism epidemic’ (because you know they will)?

SBC: I think the term ‘epidemic’ of most value in relation to contagious diseases, which autism is not.

KL: Can I rephrase my question? Would you say your findings support the idea that there has been a true rise in prevalence? As oppose to the seven items you say have caused a seeming rise in autism earlier in your paper?

SBC: There has been a real rise in prevalence but what is at issue are the causes of this rise. In the paper we summarize the quite ordinary factors that might have driven the rise, such as better recognition, growth of services, and widening diagnostic criteria.

So next time someone who likes to bandy about the phrase ‘epidemic denier’ like he knows what he’s talking about when he claims that the ‘epidemic deniers’ say that autism is just better recognised these days, tell him there’s a lot more than just one reason:

Prevalence estimates for autism-spectrum conditions have shown a steady increase over the past four decades. In 1978, the consensus estimate for classic autism was 4 in 10 000; today autism-spectrum conditions (including classic autism) affect approximately 1% of the population. This massive increase is likely to reflect seven factors: improved recognition and detection; changes in study methodology; an increase in available diagnostic services; increased awareness among professionals and parents; growing acceptance that autism can coexist with a range of other conditions; and a widening of the diagnostic criteria.

Does the Lupron Protocol hurt us trying to get insurance parity?

22 May

One of the big issues in the US autism community today is the quest for insurance coverage for autism. Many states are considering or passing laws right now on this very issue.

One question that comes up is how to address alternative medicine. Lawmakers don’t want to make an autism diagnosis a free pass to any and all therapies–be they real, experimental or bad.

So, take a look at the “Lupron Protocol”. This was discussed in a recent article in the Chicago Tribune.

For those who have been lucky enough to not hear about the Lupron Protocol, here is a brief history.

Professor Simon Baron-Cohen proposed a theory that autism might be caused by exposure to higher than normal levels of testosterone in the womb.

Mark and David Geier took this this idea, mashed it up a lot and mixed it with their concept that autism is caused by mercury. Their theory? Mercury binds with testosterone in the brain, forming crystalline sheets which are difficult to remove with chelation.

Utter and complete nonsense.

The Geiers then proposed that reducing the amount of testosterone in the system would allow chelators to access the mercury. They had found a way “to get the mercury out”. Removing the mercury, according to them, would result in improvement or recovery from autism.

Utter and complete nonsense.

Fast forward to today. The Geiers have set up “franchises” across the country to “treat” autistic kids with Lupron, a drug which shuts down testosterone production in the body.

Utter, complete and scary nonsense.

Insurance companies won’t pay for this. For one thing, they don’t usually pay for experimental therapies. Calling the Lupron Protocol “experimental” is just wrong. Experiments are controlled. The subjects are informed that the therapy is experimental and there is some oversight and there is an actual study going on. At best one could call the Lupron Protocol “alternative” medicine.

Or, one could call it, utter, complete and scary nonsense. Just my personal opinion.

Since the insurance companies will not pay for nonsensical autism therapies, the Geiers have decided that autistic kids have a very high incidence of early onset or “precocious” puberty. They test for this:

To treat an autistic child, the Geiers order $12,000 in lab tests, more than 50 in all. Some measure hormone levels. If at least one testosterone-related level falls outside the lab’s reference range, the Geiers consider beginning injections of Lupron. The daily dose is 10 times the amount American doctors use to treat precocious puberty.

$12,000?!? I am trying to find out from a reputable source how much the tests to determine precocious puberty really should cost.

Note that they do a LOT of tests. If they get any single test which indicates precocious puberty, they diagnose and start treatment.

I am not alone in questioning these tests. Experts in precocious puberty have questioned them as well. From the Tribune story:

The blood tests the Geiers use as proof of excessive testosterone don’t show that at all, and other data they cite mean nothing, said Paul Kaplowitz, chief of endocrinology at Children’s National Medical Center in Washington, D.C., and an expert on precocious puberty. They also leave out test results that could help show whether the children are in early puberty, he added.

Looking at the tests, Kaplowitz said he asks himself: “Is Dr. Geier just misinformed and he hasn’t studied endocrinology, or is he trying to mislead?”

If the tests cost $12,000, how much do you think the treatment costs?

The cost of the Lupron therapy is $5,000 to $6,000 a month, which health plans cover, Mark Geier said. However, two families told the Tribune that they had trouble getting insurance to pay for the treatment.

Yep, $60,000 plus per year. Again, I am trying to find out how much a legitimate course of Lupron should cost. Also, I am very interested to know how long a course of Lupron should take. Should it go on indefinitely, as apparantly the Geier protocol does? Or, is there some finite time involved?

Given the opinions of the actual specialists interviewed by the Tribune, it seems pretty clear that the Geiers are neither treating mercury poisoning nor precocious puberty. What they are doing is charging for a lot of expensive tests and even more for a long regimen of Lupron.

Is it any wonder that the insurance companies are balking?

Is there any question that this will make it harder for the rest of us to get real insurance parity for people with autism?

Bravo Age of Autism

20 May

Yep, you read that correctly.

In a recent blog post on the Age of Autism blog, Dr Lorene E.A. Amet wrote about “Testosterone and Autism”. While much of the piece seems to be fighting a straw man (the theme is that Simon Baron-Cohen wants to use testosterone to screen for autism prenatally–without a link to the story or a quote from SBC, I found this difficult to wade through). But, as part of her piece, Dr. Amet wrote:

It is of great concern that studies on testosterone and autism are being misinterpreted, leading to the use of therapies aimed at disturbing steroid hormone production in individuals with autism. Currently, many autistic children may be being treated, without proof of safety and scientific and medical evidence of benefit, with a view to reducing their hormonal secretion of testosterone (Lupron Therapy, Spironolactone). The rationale behind advocating these therapies appears to be based on a misunderstanding of autistic behaviours and without systematic laboratory evidence of abnormal testosterone levels.

I had to double check that I was reading the right blog! I mean, Age of Autism allowed someone to state that the the rationale behind using Lupron to treat autism is “based on a misunderstanding”.

For those who are lucky enough to not know, Lupron as a treatment for autism is the pet project of Mark and David Geier. These are near heroes to the world of Age of Autism, due in large part to their promotion of REALLY bad epidemiology (for example, here, here and here on Epiwonk’s blog) to support the thimerosal/autism link.

The Geiers took the testosterone theory of Dr. Baron-Cohen and ran with it. Ran without knowing what they were doing or where they were going. Somehow they came to the conclusion that Testosterone binds with mercury in the brain, making it difficult to remove the mercury with chelation. Reduce the testosterone in the system, they guessed, and one could get the mercury out. Since in their world autism is caused by mercury, this will “recover” or “cure” people of autism.

Doesn’t make any sense to you? That’s because it doesn’t make any sense. At all.

Even though the idea of using lupron is misguided and potentially dangerous, that doesn’t mean that the groups that sponsor the Age of Autism blog would be willing to out the Geiers, even without specifically naming them, for the unscientific team that they are.

To be honest, I think the Age of Autism editors just missed that paragraph by Dr. Amet before approving it to be published (if they approve at all).

But, it’s there now for all to read. Bravo Age of Autism. Bravo for joining the world of people who find the Lupron Protocol to be based on a “misunderstanding” of the science.

Professor Simon Baron-Cohen Speaks

22 Apr

Professor Simon Baron-Cohen of Cambridge University’s autism research team wrote a piece for New Scientist recently about media distortion:

WHEN media reports state that scientist X of Y university has discovered that A is linked to B, we ought to be able to trust them. Sadly, as many researchers know, we can’t.

He talks about the Observer debacle of 2007 and how that paper made a total hash of leaked data. At the time Baron-Cohen said:

The draft report, he says, “is as accurate as jottings in a notebook”

The big furore was that the paper was working on prevalence rates and mentioned a few rates of autism from 1 in 58 to 1 in 200. Guess which one the Observer decided was the more newsworthy? Baron-Cohen again:

Baron-Cohen says their study of Cambridgeshire children, which has been running for five years, comes out with a range of figures from one in 58, to one in 200, depending on various factors. The draft report, he says, “is as accurate as jottings in a notebook”. He adds that the data is with public health officials, who are crunching the numbers.

So it was really a total non-story. Some scientists were working on a paper about prevalence and had some unadjusted figures. At that point, someone in the team decided to leak the unadjusted report to the press who swallowed it hook, line and sinker.

Fast forward to last month and the Daily Mail runs a story:

Researchers now believe as many as one in 60 children has some form of the condition.

Up and down the blogosphere at the more credulous blogs and news pages the 1 in 60 figure is touted about. Indeed, only yesterday on the Age of Autism John Stone was claiming Baron-Cohen’s silence about the Daily mail article in his New Scientist piece as proof definite that the 1 in 60 figure was accurate:

The most significant thing about Simon Baron-Cohen’s recent New Scientist grouse about media irresponsibility and science (HERE) was that he did not mention the publication just a few days earlier in the Daily Mail of his latest – if long delayed – figure for the prevalence of autism in the UK school population of 1 in 60….

Given the importance of this figure – a true rate 66% higher than formerly acknowledged – the long term reticence of Baron-Cohen and the study’s sponsor Autism Speaks UK is dismaying – indeed Science Media Centre and Autism Speaks UK were still apparently trying to deny it to the Mail ahead of publication of the article.* But the silence of all these parties, and most particularly of Baron-Cohen after the Daily Mail article came out suggests that they did not have a leg to stand on.

When John Stone speaks with certainty in his voice, that is a certain clue that something is not as it seems. So I decided to email Professor Baron-Cohen to get his take on the Daily Mail. After a chat about what it meant he obliged me with an exclusive quote:

The Daily Mail was irresponsible in reporting on the results of our study before it was published in a scientific, peer-reviewed journal and where the details of the study are publicly available for scrutiny. The study will be published in the British Journal of Psychiatry on June 1st 2009.

My own opinion based on the discussion we had and that quote is that the paper might not be quite what it appears from the abstract posted at IMFAR. At any rate Professor Baron-Cohen is right that the Daily Mail have – just like the Observer – acted very irresponsibly. So are those that are reporting a UK prevalence of 1 in 60. Irresponsible and very previous.