To correctly understand the motives behind this (I must confess, unexpected) exchange of twitter posts between Prof Simon Baron-Cohen and myself, partially on an unrelated (and as such, left out of the body of this article) subject, I have copy/pasted Prof Baron-Cohen’s tweet which prompted my rather angry response, and his reply.
Because it would have been impossible for me to relevantly respond in a tweet, I have decided to write a short, Open Letter, hoping to clarify my position.
The tweets, in their subsequent order:
“Thanks Anna. Your charity Na’amod (British Jews Against the Occupation by Israel) is a vital campaign if we believe in justice for Palestinians, democracy, civil liberty, and an ethical society. I’m proud of the work you’re doing to signal we don’t support the occupation”
Simon Baron-Cohen @sbaroncohen 6:26 PM · Sep 30, 2020·Twitter for iPhone
“I’ve tried hard to make sense of your double/confused stand on the disastrous changes in DSM5 re Autism/Asperger’s, seeing much value in your previous research. But you’ve changed from a researcher into an opportunist.
But to support Hamas’ murderous legacy, is beyond putrid.”
[Rev] Rom C ©Medi-Social Model of Disability @Rev_Rom_C8:24 PM · Sep 30, 2020·Twitter for Android
“My position on the deletion of Asperger Syndrome from DSM-5 in 2013 remains clear. I wrote a NY Times editorial on this in 2009 https://nytimes.com/2009/11/10/opinion/10baron-cohen.html … and a Scientific American editorial on this in 2018 https://blogs.scientificamerican.com/observations/is-it-time-to-give-up-on-a-single-diagnostic-label-for-autism/ … arguing for the recognition of subgroups of autism”
Simon Baron-Cohen @sbaroncohen 6:32 AM · Oct 1, 2020·Twitter Web App
To this day, I count myself academically indebted to Prof Baron-Cohen’s research, findings, and above all, his intellectual flexibility, never obtuse in allowing his theories, for long the golden standard of autism’s psychological perspective, to remain permeable to new, progressive ideas. The brilliantly compacted “Autism and Asperger Syndrome: The Facts” (2008) holds in my library, the crossroads, first point of call for everything Autism and/or Asperger’s related. The copy I own, looks like a mini x-mas tree, adorned with all possible shades of highlighters and colourful sticky notes. I am a lecturer for the Recovery College of the Midland’s largest Mental Health Trust’s, Autism Spectrum introductory course, using and promoting this book, as so far, the best introduction to understanding Autism and Asperger’s.
I have nevertheless, ever since the dawn of the DSM-5, expressed both my subjective and objective frustrations about the confusion caused by the (in my opinion) unwarranted (and as it turned out manipulated) changes to the Autism and Asperger’s classifications.
In my article “The importance of Asperger’s Syndrome as a unique clinical diagnostic category – I –“ I have insisted that “In my opinion, DSM-5 has managed with its promotion of an Autistic Spectrum “umbrella”, to both simplify, but also confusingly complicate the clear understanding of exactly those specifics which could make the lives of neurodivergents, less miserable.”
Prof Baron-Cohen describes in his book the core of these “specifics”, as:
“Classic autism and Asperger syndrome share two key features:
-Social communication difficulties
-Narrow interests and repetitive actions.
But they differ in two key ways:
-In Asperger syndrome, IQ is at least average and there was no language delay
-In classic autism, IQ can be anywhere on the scale, and there was language delay.”
Remembering that the aforementioned book was first published 29 May 2008, I am not at all surprised that the author’s position in the New York Times (NYT) op-ed article, after only 1 ½ years, has remained unchanged, openly against the hastily implemented deletions and aggregations in the DSM-5:
“We don’t yet know if Asperger syndrome is genetically identical or distinct from classic autism, but surely it makes scientific sense to wait until these two subgroups have been thoroughly tested before lumping them together in the diagnostic manual.”
Further, in his Scientific American (SA) article on May 4, 2018, the Professor asks “Is It Time to Give Up on a Single Diagnostic Label for Autism?” and replies “That was the ruling by the editors of the authoritative Diagnostic and Statistical Manual in 2013, but it remains controversial”.
They are not, these two articles, the source of my concern, erupted in the thinly veiled charge against what I perceive to be Prof Baron-Cohen’s caving in to the pressure of a current to which, unlike him in an article in the same SA on April 30, 2019 where he writes: “The Concept of Neurodiversity Is Dividing the Autism Community, It remains controversial—but it doesn’t have to be”, I see no evidential reason to cater.
I have clearly stated my position in regard of Judy Singer’s “sacrosanct” “neurodiversity” in “A Concerned Neurodivergent’s critique of Judy Singer’s “There’s a lot in a name… Diversity vs Divergence” article – I – …”:
However, what metaphorically made my spinal fluid boil and my left eye badly twitching were her following statements: “The role of the “NeuroDiversity Movement” then is to be a federation of different Neurotribes”, but even more the “I argue therefore that ND must remain “sacrosanct”, a universal truth that we can point to when insisting on the necessity of our existence.” (emphasis mine).
Judith Singer must still decide if she’s a scientific sociologist or an “impractical dreamer”, because neurodevelopmental disorders are not a canvas where here spirituality charged vision of autism can find its colourful splash place. Further, I heavily doubt that the director of the Autism Research Center at Cambridge University should confuse with fringe sociology the minds of those like myself, avidly look for research such as “Genes related to sex steroids, neural growth, and social-emotional behavior are associated with autistic traits, empathy, and Asperger syndrome” (2009).
I am a poet, a writer, and see the intricacies of life as complex, analytical poetry, yet even as a theoretical philosopher, I respect the necessary divide between molecular pathology and “impractical” dreaming. I expect the world’s leading Autism Research body’s similar attitude, otherwise, we will end up joining Ozzy Osbourne in “dreaming [our lives] away”, leaving autistics and their carers daydreaming (or rather nightmaring?) about what went wrong, when and where.
My concerns about this derailment of perspective away from the much desirable scientific pathway, were aggravated with the dawn of S. K. Kapp’s (ed) “Autistic Community and the Neurodiversity Movement Stories from the Frontline” (2020), especially its chapter 13, where Kapp, without any reservations whatsoever, in a veritable John le Carré style, writes:
“Communications with the Workgroup In 2009 – ASAN made contact with the DSM-5 Workgroup through one of its members, hereby referred to as Member A, whom Ari had corresponded with earlier regarding early intervention methodology. The two had earlier found common ground over a shared critique of the excess rigidity of behaviorist interventions. Separately, Ari connected with the workgroup Chair at a meeting of the Interagency Autism Coordinating Committee (IACC) and, after Member A provided the Chair and Workgroup with a favorable impression of ASAN, Ari was invited to provide written and verbal feedback to the workgroup at several teleconferences and semiannual in-person meetings in Washington DC hotel rooms.” (chapter 13, pp 174-175)
However, my problems with Prof Baron-Cohen’s “position on the deletion of Asperger Syndrome from DSM-5 in 2013” as he himself wrote, stem from a rather obscure, compared to the NYT and SA, Spectrum News article, “Despite fears, DSM-5 is a step forward” on 30 May 2013, where with a strange aplomb he writes:
“When the American Psychiatric Association (APA) released the proposed criteria for autism in the DSM-5, its revision of the Diagnostic and Statistical Manual of Mental Disorders, it caused panic for many people on the spectrum — perhaps because they don’t like change.
Now that the DSM-5 has been published, however, I expect the fuss will calm down. I was among those who raised concerns about the proposed deletion of Asperger syndrome— but looking at it dispassionately now, there seems to be little to fear in the DSM-5 autism entry, and a lot to recommend it.”
As the Professor wrote in his tweet, he has indeed challenged the changes from DSM-4TR to DSM-5, both in 2009 and 2018. The reason for my “double/confused stand” choice of words in my initial tweet, was the concerning attitude shimmering in the Spectrum News article from 2013, as exemplified above, also what I perceive as a caving in to the “neurodiversity” ethos in the short, “disorder – condition” exposé further in the article.
Why am I concerned, Professor?
Because unlike many of the “neurodiversity” social-justice-“warriors”, I have been diagnosed with ASD/Asperger’s later in life, after over five decades of a life ruined by a disorder which has plagued my family for generations, having been psychiatrists and psychologist whom helped me break this literal “curse”, not sociologists & co, such as those wanting to remove Autism from both DSM and ICD, quoting You, Prof Baron-Cohen, in support of their endeavour, something of which I’m not sure you were/are aware…?
Professor, I do not want that groups driven by partially or entirely questionable motives to continue their manipulative, subjective involvement in the lives of individuals of individuals whom have never consented to be tribalized, spiritualised, marginalised, ultimately locked out from a hijacked “autism community”, which you oftentimes mention.
In a related article, I asked: “Is an ‘autism community’ a dangerous mirage, or a valid social construct?”
My response is clear, and concludes my reply:
“I believe that if it becomes bound to a hive-mind, with enforced, rigid language policing and taboo subjects, it is no better than an aggressively militant mob, a mockery and indeed a dangerous mirage of a dystopian “community”.”
(Rev.) Romulus Campan
LTh(Hons), FDScMH, CertEd, QTS,
PgCert Religion, Spirituality and Mental Health
PgCert Special Psychopedagogy, PgCert Autism & Asperger’s
Chair, Disability & Neurodiversity Staff Network