"Identifying the lost generation of adults with autism..." (Simon Baron-Cohen and Meng-Chuan Lai)

My email to Editor of Lancet Psychiatry:

To: niall.boyce@lancet

Sent: Saturday, January 23, 2016 1:50 PM

Subject: Article needs retracting: "Identifying the lost generation of adults with autism..."

Dear Niall Boyce,

Re "Identifying the lost generation of adults with autism....." by Meng-Chuan Lai and Simon Baron-Cohen.

http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366%2815%2900277-1/abstract

This article is very seriously misleading and needs to be retracted.  It starts with an assertion of a highly dubious massively important controversial “fact” with no citation whatsoever in support. The opening sentence (of both abstract and text) asserts to us that as of 2014-15, 1% of 10-year-olds are autistic, and 1% of 30-year-olds are autistic, 1% of 50-year-olds are autistic, and so on, for “all ages”. And the title of the paper reinforces that untruth with its fictional notion that there is (by implication "therefore") a “lost generation” of older autistics who have mostly remained unrecognised as autistic and thus “lost”. The un-explicated implication being that there has not been any increase of autism but instead only an increase of awareness or diagnosis. And this paper sets out from its beginning by grossly misleading the reader into assuming that that is known to be a fact, indeed established to such an extent it doesn’t even need any citation in support.

And that title and first sentence are not incidental to the paper but are its central premises.

I sent emails to the authors, querying the justification for that first sentence.  I got no reply from SBC, not even after I posted the letter attached herewith to him by Signed-For delivery (KP597377771GB at www.royalmail.com, received 12th Jan 2016).[I will append that letter to end of this blogpost.]

Dr Lai sent a series of replies. The full correspondence is too lengthy to include here in full, but here are the main elements.

His first reply was as follows (and note furthermore the absurd sentence I have bolded, which effectively concedes my objection anyway).

Dear Robin,

Thank you for your message. For clarification, when we write “Autism spectrum conditions (panel 1) comprise a set of neurodevelopmental syndromes with a population prevalence of 1% across all ages.”  we are NOT referring the term “ages” to different chronological years (i.e., 1970s, 80s, 90s, etc.) but are referring it to the ages of the individuals; that is, we are referring to epidemiological evidences that recent cross-sectional studies in children, in teenagers and in adults all tend to show a prevalence around 1% (depending on studies but can range from around ~0.5% to ~2%). We, therefore, have no intention to argue in the paper whether the prevalence of autism is constant or not across different chronological years.

Hope this clarifies the question/mis-understanding.

Regards,

Meng-Chuan

In reply I pointed out that this entailed an obvious absurd fallacy. 

"..... Your phrase “all ages” includes obviously those who are 40 or 60 years old.  And even older.  As of 2015, a person who is age 40 was necessarily born in 1975 or earlier, and a person of age 60 was necessarily born in 1955 or earlier.  That is, such ages of persons are impossible to disentangle from the huge change of apparent incidence (per birth-year cohorts) which is the basis of the notion of the autism increase.  I fail to see any way you can separate ages (of “all ages”) from specific years of birth. 

 In response to my request for any evidence to support that claim of your first sentence, you didn't send any, but instead included a sentence contradicting it.  And that notion of “1% across all ages” is fundamental to the point of your entire article, namely the notion of a “lost generation” of older autistics."

In further correspondence, Dr Lai resolutely held to his bizarre notion that persons' ages (as of 2014-5) could be separated from their dates of birth of after or before 1975 or earlier.  And meanwhile no reply at all has been forthcoming from Dr Baron-Cohen. 

The notion that there has been no real increase of autism has been rejected by many people well-qualified to do so, not least people with many years direct experience of the field such as Bernard Rimland (founder of ARI), Prof. Sally Rogers of MIND, and Lisa Blakemore-Brown.  And the careful analysis by Hertz-Picciotto and Delwiche concluded that the increase must be very real indeed: https://www.ncbi.nlm.nih.gov/pubmed/19234401 discussed at:

http://www.environmentalhealthnews.org/ehs/news/autism-and-environment

And yet this Lancet "review" opens its abstract and main text with a sentence which fails to even mention the existence of that H&D 2009 paper (or anything else of the many voices challenging their major assertion).  Why no such mention?  Failing to cite major counter-evidence is the hallmark of charlatanism rather than of anything worthy to be published in a Lancet journal.  Why no reply from SBC, and only infantile nonsense from the other author?  How about because there is no sensible, honest defence for this outrageously deceiving article.  Its continuing presence unchallenged in your journal threatens to bring your journal into disrepute too. 

Sloppy, dishonest work in high places such as this "review" undermine not only the credibility of your journal but of the medical research community more generally.  It needs to be cut out promptly rather than allowed to remain festering.

Sincerely,

Robin P Clarke

(PS.  The authors might wish to attempt a defence on the grounds that Brugha et al. "prove their thesis right".  But (apart from the other objections above) Brugha et al. is fundamentally unsound.  They described in considerable detail their procedures for establishing reliability of the assessments.  But not a single word about establishing of the (infinitely more important) validity of the assessments, that is establishing that the measures at age x were equivalent to the measures at age y.   And that is because it is logically impossible to do that validity verification (except maybe over several decades).  It's a bit like if I put a steel ruler in a hot fire and declared that I can see that its own scale shows it to be still exactly 12 inches long, so “therefore” the heating hasn't changed its length.  Furthermore the Brugha study has been damningly criticised for other defects as in the following quotations. 

https://childhealthsafety.wordpress.com/2011/08/19/autism-figures-existing-studies-shows-shocking-real-increase-since-1988/  "[The latter is not a particularly inspiring piece of work.  Brugha did not find a single adult with childhood autism, nor did he refer to Baird or Baron Cohen but baldly claimed for comparison a childhood figure of 1 in 100, and he changed the standard diagnostic criteria to catch adults who would not normally have a diagnosis.  Of the 14,000 potential participants there was a 50% drop out rate with 7000 responding to the original telephone survey.  The survey looked for adults with one of four mental illnesses.  The only autistic condition was Asperger syndrome but Brugha et al now claim to be able to give a global figure for all autistic conditions which is of course impossible.  Whilst having research ethics approval the study was not carried out according to accepted ethical standards.  Informed consent was not obtained.  Participants were misled as to the purpose of the survey.  They were not told they were being assessed to ascertain if they were mentally ill.  A financial inducement to take part of a shopping voucher was offered – aside from ethical issues that would tend to encourage those of lower incomes to participate and invalidate the study.  Mentally ill people are more likely to be of lower income if their ability to earn a living is impaired.]"

And much more at https://childhealthsafety.wordpress.com/2010/02/10/uksurveyautismlink/

And SBC was asked in 2009 where are all the "lost generation" 40-60 year-old non-verbal autistics wearing diapers and banging their heads on walls and spinning around - but as is his custom he has not had the decency to reply. 

And the NHS is now in full criminal deceit mode, with non-autistic non-disabled older people being falsely given autistic diagnosis on the faintest excuse, whereas mothers of severely disabled toddlers despair of getting any honest diagnosis - just to pretend the increase has not happened, just as this deceiving "review" paper does too. 

For these reasons Brugha's (and any similar studies) amounts to no evidence whatsoever for countering the real evidence of Hertz-Picciotto and others. 

~~~~~~~~~~~~~~~~~~~~~

Letter signed for on 12th Jan (though not by SBC himself):

9^th January 2016

Dear Dr Baron-Cohen,

I am writing here in respect of your article "Identifying the lost generation of adults with autism spectrum" in Lancet Psychiatry 2015.

I am concerned that I have not yet heard from you about this article.  I hope you are not unwell.

I will send herewith a copy of my correspondence with your co-author Meng-Chuan Lai.  His replies get even more absurd and indefensible than the original article (indeed raising doubt about his sanity).  This matter of the huge tragedy of the manyfold increase of autism (and the outrageous claptrap such as Brugha being used to pretend it hasn’t happened) is very serious.  Publishing of sloppy, wantonly misleading writing about it is completely unacceptable and unethical.  It is all the more unacceptable that you yourself put your name to such a grossly misleading and unworthy document, given that you are widely trusted as “the leading expert” on autism.  And further that this is the very opening of a “review” being published in the Lancet no less, thus likely to be “authoritatively” parrotted by future generations of  students as supposed established knowledge. 

I included two of your email addresses in my correspondence with Meng-Chuan (sb205@cam and editorial@molecularaut) but have not heard any comment from yourself on the matter.  I do not know whether you are aware or not of these issues (though as co-author you should have been aware of the opening sentences of your own article anyway).  Accordingly I am now sending this letter by signed delivery requesting that you clarify your position on this very important matter.  Do you agree with myself and others that the article is unacceptably misleading and must be retracted?  Or what?  

I look forward to hearing from you as soon as practical.  You have one of my email addresses at the top here, and another is rpclarke@autism. 

Sincerely, Robin P Clarke