Issue 6 Online Extra Autism The Clinical View: Simon Baron-Cohen on not taking his own AQ Test & His views on Prenatal Screening for Autism

This article is a companion piece to The New Idealist Issue Six: The Autism Issue which you can download here.

Please note: This article was originally published in The New Idealist section of The Intelligent Review site in August 2014 before being transferred to this new site in July 2015.

This article follows on from the interview with Simon Baron-Cohen in the issue and includes Simon’s comments on his AQ Test as well as his written clarification of his views on prenatal screening for autism.

Simon on not taking his own Autism Spectrum Quotient (AQ) Test

Simon and his colleagues at Cambridge’s Autism Research Centre created the Autism Spectrum Quotient, or AQ, as a measure of the extent of autistic traits in adults. Simon uses this test as part of the screening process for referrals to his CLASS Diagnostic Centre for autistic adults. It is also used up and down the country by medical health professionals and adult Asperger’s support groups to identify those appropriate for a full diagnosis.

The test was recently featured on Channel 4’s ‘Embarrassing Bodies’ programme and (ignoring the somewhat dubious programme title), the online results show over 500,000 have completed the test. In short it’s the ‘industry standard’ initial screening test for those suspected of being autistic, so The New Idealist asked Simon about it.

The New Idealist: In one of your talks you reference a quote from Hans Asperger “for success in science or art, a dash of autism is essential”.  So as a scientist yourself, where do you sit on your own AQ scale?

Simon Baron-Cohen: Ah (laugh), though I haven’t taken the test, because I developed it, I sort of know how it works. I’m not naïve to it all. So, I don’t know if it would be very valid for me to take it.

But, you know, as a scient— I mean, scientists, as a group, tend to score higher than people who are outside science on the AQ. We’ve used the AQ in our university, for example, and compared the students in humanities to the students in science, and the scientists score just slightly, but significantly, higher than humanities students.

It’s all about, you know, that the AQ isn’t diagnostic; it simply counts how many autistic traits people have, and we all have some, and it’s, it’s a bell curve, you know. It’s, it’s a section of the population, and it may only be that if you score very high that you might need a diagnosis.

Simon’s clarification of his comments on prenatal testing:

When The New Idealist interviewed Simon as part of The Autism Issue, we asked him about his previously stated views on prenatal testing. During the interview Simon commented that he would have preferred if we had requested a written response from him on the topic. Below is the relevant excerpt from the interview which was printed in the magazine with Simon’s written response underneath.

Please note: The heading below is a wordplay on the title of Simon’s book ‘The Science of Evil’, which compares Simon’s much-contested view of what he thinks is a ‘lack of’ empathy displayed in autism to the lack of empathy displayed in Psychopathy, Borderline Personality Disorder and Narcissism. This unproven and hugely controversial view has been widely spread by Simon for many years and many autistic advocates say that it has helped contribute to a damaging view of autistic people and a fundamental mis-understanding of autism. The New Idealist explores Simon’s divisive views on autism and empathy in more detail in the main issue. 

The Science of Evil? Simon on a Prenatal Test for Autism & Eugenics

Recently, there has been a lot of discussion around the development of a prenatal test for autism. It is clear that the main use of such a test would be to allow the mother to decide whether to terminate the pregnancy in a similar way the Down Syndrome test is conducted currently.

It could be said that Down Syndrome is just as misunderstood as autism, as advances in medical treatment mean that many Down’s children can now expect to live until their fifties/sixties and a significant amount can live and work independently with the right support.

Since the introduction of a prenatal test for Down Syndrome, around 9 in 10 women who are told they will have a Down’s baby have terminated their pregnancy [5].

In May 2014 during an interview with David Cox, contributing writer for the Guardian for a piece entitled “Are we ready for a prenatal screening test for autism?” [6], Simon commented “The best case use of a prenatal test at the moment would be if you could say to a parent, your child has got an 80% likelihood of autism and so once the baby’s born, we would like to keep a close eye on that child in case they need extra support like speech therapy or social skills training or some sort of behavioural approach. That would mean that there were no potential side effects and you might be able to intervene at a much younger age. So from an ethical point of view, if there was a screening test, using it for early intervention via a psychological approach would be quite risk-free and could carry a lot of benefit.”

The New Idealist wondered why Simon was expanding on the ‘benefits’ of a test without seeming to adequately address the risks relating to the terminations of potentially autistic babies that such a test would produce.

Knowing that quotes can be misinterpreted, The New Idealist asked Simon about his comments. He responded “I suppose I was flagging up that, you know, there might be two different reasons why they were doing that, why that test was being developed. One might be, if you want, the termination of the pregnancy, like they do for, say, Down’s Syndrome. It, it can be used that way. But a diff– , a very different sort of use might be towards early identification, so that you could start intervention at an even earlier point”.

During our discussion The New Idealist put to Simon that there didn’t seem to be any reason why screening for ‘early intervention’ needed to be done prenatally. He replied “You’re right, but the prenatal part of it isn’t the critical bit. I think in terms of a very early identification test having benefit. It probably would be just as fine if it was at birth or in the first few weeks of life”.

When The New Idealist mentioned to Simon about a talk seen online where he had lectured about ‘the dangers of eugenics’ [7], we were interested to see that a week after our interview Simon published new research covered in the Guardian “Autistic boys exposed to higher levels of hormones in womb, study finds” [8].

This piece had the following comment from Simon “A prenatal test that is used to make a decision to terminate a pregnancy could effectively be a form of eugenics. A prenatal test that is used for early detection, with a view to starting intervention in early postnatal life may be less ethically contentious, and would need to be evaluated for its benefits. But we are a long way from that at present”.

References:

[1] http://www.independent.co.uk/news/people/profiles/simon-baroncohen-ali-gs-smarter-cousin-and-britains-leading-expert-on-autism-1688427.html

[2] Simon Baron-Cohen, Zero Degrees of Empathy: A new theory of human cruelty (2011). Table 1 ‘Distinct profiles of the empathy disorders’ (P105).

[3] Simon Baron-Cohen, The Science of Evil: On empathy and the origins of cruelty (2011). Table 1 ‘Distinct Profiles of the Empathy Disorders’ (P158).

[4] http://www.autismresearchcentre.com/project_1_empathy

[5] http://www.nhs.uk/news/2008/11November/Pages/DownssyndromeQA.aspx

[6] http://www.theguardian.com/science/blog/2014/may/01/prenatal-scrrening-test-autism-ethical-implications

[7] Prof. Simon Baron-Cohen: Zero Degrees of Empathy, The Lost Lectures: https://www.youtube.com/watch?v=948FVsdZ9v0

[8] http://www.theguardian.com/society/2014/jun/03/boys-with-autism-likely-exposed-to-more-hormones-in-the-womb

Simon’s written clarification of his comments in the Guardian article (reproduced verbatim):

thanks for asking me to comment on the text below. it is much easier to discuss the wording of a quote when it is in writing. this is all i was asking you to do, and i appreciate the opportunity to do this now:

“The best case use of a prenatal test at the moment would be if you could say to a parent, your child has got an 80% likelihood of autism and so once the baby’s born, we would like to keep a close eye on that child in case they need extra support like speech therapy or social skills training or some sort of behavioural approach,”

“That would mean that there were no potential side effects and you might be able to intervene at a much younger age. So from an ethical point of view, if there was a screening test, using it for early intervention via a psychological approach would be quite risk-free and could carry a lot of benefit.”

i would make several comments about the above quote, and am copying in david since it comes from his piece:

1) even the “best case” use of a prenatal test outlined above has a lot of potential limitations. first, in the scenario above, the predictive power of the test is only 80%. that means that in 20% of pregnancies, the test “misclassifies” the child, which could anxieties in a parent unnecessarily (saying that the child may have autism when s/he does not) or overlooking a child (saying that the child is neurotypical when s/she is not). so my first comment is that a prenatal test with these properties could do harm – it is not free of concerns.

2) using the test to “keep a close eye on that child in case they need extra support” seems harmless enough but offering a behavioural approach would presume there had been sufficient research to show that such interventions are effective. again, there are very few if any studies trying such interventions in infancy, so the evidence base is weak. one cannot recommend any intervention that has not been evaluated via a randomized control trial (RCT), which is the gold standard in clinical research, and where the RCT shows clear benefits and acceptably low or zero unwanted side-effects.

the point then is that psychological approaches are likely to have fewer unwanted side effects than pharmacological interventions, but even this would need to be tested, to demonstrate the intervention is “risk-free”.

david’s piece was fine. all i am doing here is unpacking some of the issues in more detail, as your interesting question provides an opportunity to do so.

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