In the recent IMFAR meeting Simon Baron-Cohen had the opportunity to deliver a lecture closely following a presentation by John Elder Robison. John’s lecture had been quite emotional something that according to Simon had moved him to tears. The basic theme of John’s lecture had centered on the pain and suffering caused by his diagnosis of autism. Early on in John’s life he had wanted to have a girlfriend and enjoy a steady job; however, his autism made that impossible. In essence John’s cognitive style made him doubt his own abilities forcing him to pursue a multitude of different career paths. These events played on John’s mind convincing him that he was a “fraud”.
Although at the beginning of his presentation Simon praised John’s speech, from there on he went to provide a biased lecture that claimed, among other things, that the pain and suffering caused by autism were a result of comorbidities such as gastrointestinal disorders and/or seizures. In essence Simon completely ignored John’s claim of suffering caused by an autism diagnosis in order to establish his own line of reasoning.
Simon’s presentation was a call for a grammatical shift in nomenclature that claimed the benefits of talking about autism spectrum “conditions” rather than autism spectrum “disorders”. His claim was based on 10 different arguments. In each of these points the claim was made that the term condition presumably had the opposite connotation.
1) Disorder implies a biomedical cause.
2) Disorder implies severity.
3) Disorder implies suffering.
4) Disorder implies disability.
5) Disorder implies that something is broken or dysfunctional in the brain.
6) Disorder implies that there is only one way to be normal.
7) Disorder implies that there is nothing positive about the lived experience of autism.
8) Disorders implies the presence of cognitive defects.
9) Disorder implies the presence of serious psychiatric risk associated with autism, e.g. suicide.
10) Disorder gets you insurance cover.
In the end Simon concluded that the term disorder is potentially stigmatizing, the word itself being incompatible with having a different personality style or talent. In effect, Simon said that individuals with affective, behavioral, bipolar and eating disorders,among many others, do not have their own personality style and are talentless.
Before the presentation, I really liked Simon, his ideas and articles, but his presentation was scientifically weak, poorly sustained and extremely biased. A “medical condition” is defined in the free dictionary (http://medical-dictionary.thefreedictionary.com/medical+condition) as: “A disease, illness or injury; any physiologic, mental or psychological condition or disorder (e.g., orthopaedic; visual, speech or hearing impairments; cerebral palsy; epilepsy; muscular dystrophy; multiple sclerosis; cancer; coronary artery disease; diabetes; mental retardation; emotional or mental illness; specific learning disabilities; HIV disease; TB; drug addiction; alcoholism). A biological or psychological state which is within the range of normal human variation is not a medical condition.” There is very little to differentiate a condition from a disorder. The term itself (i.e., condition) eliminates being within the framework of normal variability be it in the physical or mental realm.
Unfortunately many of the precepts used by Simon to support his contention were only credible in his own mind. Indeed, a heart condition implies a biomedical cause that can be severe, disabling and one capable of providing significant suffering to the patient. His other precepts are equally erroneous. There are many medical disorders that neither have associated cognitive deficits nor confer serious psychiatric risk and both medical disorders and conditions can get you medical insurance coverage.
What I saw as a more serious flaw in Simon’s argument was the way he cherry picked some of the examples in order for them to fit his call for a “grammatical shift” in autism. When talking about brain studies of autistic individuals he implied that none of the existing findings were pathological because the brain in that condition was not “broken”. The examples presented were primarily in terms of variations in size of different anatomical structures but he never alluded to data sustaining a high prevalence of cortical and cerebellar malformations, gyral abnormalities, and disorders of migration or synapse formation. Indeed the data on brain pathology explains many of the symptoms observed in autistic individuals and are beginning to provide clues as to potential therapies.
Simon’s attempt to negate the seriousness of autism as a medical disorder is rooted in the New Age thinking spawned by the neurodiversity movement. This movement advocates that symptoms related to autism belong to the social rather than the medical sciences and that there is no need for treatment or research. Euphemizing the disorder negates the suffering of autistic patients that are pained because of their diagnosis. It may be that Simon’s experience has been restricted to clinical trials with higher functioning patients. If this is the case he should start advocating for those that are more representative of the condition and disabled by the same.
Some additional information in regards to the neurodiversity movement can be found in previous blogs: http://bit.ly/1Anrlex and http://bit.ly/1EO3yLL
Never been impressed with Baron-Cohen’s work. He claims that high prenatal and neonatal testosterone levels cause ASD. Klinefelter syndrome and fetal alcohol syndrome both are both associated with high rates of ASD and in fact are associated with LOW prenatal and neonatal levels of testosterone . How could he have missed that? His studies of testosterone is highly selective. Exclusionary criteria in his studies include a chromosomal abnormality, identified neurological damage or a history of medical neonatal complications.
Baron-Cohen would have excluded your grandson from participating in his research.
Good points. I am not sure as to the why of his exclusionary criteria. ASD at present is a behavioral diagnosis not a chromosomal or genetic one. Also, even if he missed the data on Klinefelter his continued proposal of the testosterone theory should have compelled him to provide an explanation by now.
Remember Baron-Cohen’s famous study one of the most discussed papers of 2010 that made almost every top 10 autism research findings ( Foetal testosterone and autistic traits in 18 to 24-month-old children). This was not even a study of ASD it was a study of ‘autistic traits’ that the media played up as Autism. His study did not include standardized diagnostic criteria for autism (DSM-IV, ICD-!0) but used an ASD screening tool M-Chat.
164 of those meeting preliminary selection criteria were excluded and only 129 participants made the final cut.
Here is his exclusionary criteria.:
Mothers were asked to participate in research at the time
of having an amniocentesis (between 2004 and 2006).
The medical records of approximately 700 amniocentesis
patients were examined, and participants were excluded
if: (1) there was a twin pregnancy; (2) amniocentesis
revealed chromosomal abnormality; (3) the child suffered
significant medical problems after birth or (4) records
were incomplete. Women whose GP gave consent (n =
283) were contacted for participation. The final sample
for this study included 129 participants (66 boys, 63 girls)
with complete data.
Click to access 2010_Auyeung_FTautistictraits_MolAut.pdf
Baron-Cohen’s refusal to let go of his testosterone theory reminds me a lot of the antivaxers who refuse to look for another cause for the increase in autism,when all science has proven them wrong.Antivaxers and neurodiversity may look very different on the surface,but they do have a lot in common.
My interest was tweaked and I looked at the inclusion/exclusion criteria for all the major collections of autism families, AGRE and the Simon Simplex family studies. All of them have similar exclusionary criteria. Here is the Simon Simplex exclusionary criteria:
‘Probands were excluded who were younger than 4 years of age or older than 18. Probands were also excluded for conditions that might compromise the validity of diagnostic instruments, such as nonverbal mental age below 18 months, severe neurological deficits, birth trauma, perinatal complications, or genetic evidence of fragile X or Down syndromes’.
This is disturbing to me.None of these studies can possibly represent the full autism community and by logic would inflate real epidemiological data
While I agree that Simon sort of ignored my description of suffering because I was autistic and isolated, etc – as opposed to suffering from GI distress or a more discrete medical issue – I still agree with him that the word condition feels better than disorder, when I describe myself.
To be fair we should tell your readers that I described both the gifts autism brought me – my focus, my ability to see into machines – as well as the suffering it caused me. It’s very much a double edged sword, at least for me.
Even as I prefer the word condition, I remain well aware that autism causes a significant portion of our population all sorts of suffering, and I realize that medical science offers a primary path to relief – not just social accommodation. Simon made the point that some of our modern-day disability is an artifact of society, but at the same time, the pain I felt when I could not read other people (and that made it hard to make friends) is not a societal thing. It’s part of how I am, and I’d feel it anywhere there were people to engage.
In this post you write about a neurodiversity movement, when in fact there is no coherent neurodiversity movement, just an emergent set of concepts, being defined in different ways by self advocates and supporters in different locations. They see the world through the lens of their own neurodiversity, which may show them a very different picture than you have seen, working as a physician with very sick or very disabled people.
You take issue with those who say “we don’t need science to help autistic people,” and I agree with you. I think we do need science, and the medical solutions that can be developed for a whole host of issues. Being neurodiverse may be a social or societal problem for some, but it’s a very real medical and/or psychological challenge for others.
At the same time, neurodiversity advocates speak out for respect, equality, and a fair shot at success, and I certainly hope you fully support that notion. I know I do.
All that means is that people advocate for different things and we can support some while disagreeing with others, and still see value in the cause. After all, you must see value in neurodiverse people. You have some in your own family, and you’ve told me how much they mean to you. And I know you see them as more than broken.
I like to think the same could be said for me, and countless other neurodiverse folks. Don’t you agree the world is better for our being here?
That recognition does not conflict in any way with a desire to relieve our distress and make our lives better. Develop all the therapies you can, I say, and let the folks of the world choose what they want; what works for them.
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Thank you for your comments and clarifications. I love your statement: “Simon made the point that some of our modern-day disability is an artifact of society, but at the same time, the pain I felt when I could not read other people (and that made it hard to make friends) is not a societal thing. It’s part of how I am, and I’d feel it anywhere there were people to engage”. Indeed, our stance is not that different. Neither of us is engaged in a quest to blame society for all the woes of autism and we both believe in treatment and research. I also do not believe in imposing treatments for those having a capacity to decide. Taking the negative stance by some neurodiversity advocates on research/treatment out of the equation, I see two main problems with this reform or movement. First, trying to pinpoint a definition has been akin to following a moving target. I am hoping that you will be able to bring some order and coherence to neurodiversity. The other point is taking precedence for advocating for respect and equality for ASD individuals.I believe that this goal is ingrained in almost any autism support organization. Bernie Rimland was doing this all along before the concept of neurodiversity was even born. Thank you again for your clarifications. I am looking forwards to reading your new book as soon as it is published.
This is nothing new for Simon Baron Cohen. He also stated that high functioning autism should not be considered a disability. One of his arguments was that autism has stayed in the population even though most autistics don’t have children because it has an evolutionary advantage. He completely ignores the studies showing de novo mutations can cause autism that Jonathan Sebat and other researchers have done. He has trivialized autism by comparing it to right-handedness and left handedness. Nothing this man says should be taken seriously.
It is interesting as anybody who has read a modicum of the literature would readily debunk anything having to do with an evolutionary advantage to autism. All of these theories are rather weak and can;t be considered as scientific (i.e., empirically established).
Simon Baron Cohen is not highly regarded among members of the ND movement, as far as I know. He wants the kinder, gentler nomenclature of “condition”, while he includes autistics in a book about the science of evil and says they have no affective empathy. He once quoted a scientist as saying autistics say other humans as “bags of skin”, and “lacking quintessentially human qualities” Something is rotten in the School of Cambridge, and regardless of where you stand on Neurodiversity, I’m glad you can smell it, too. I feel sorry for the guy, but basing science on _____fear____ and ____pity_____ isn’t really science. He seems to have no curiosity about the free will of the child, and their attempts to connect to others.
Here is a quote, implying they lack basic human qualities. Ask any parent if that is true.
“A theory of mind remains one of the quintessential abilities that makes us human (Whiten, 1993). By theory of mind we mean being able to infer the full range of mental states (beliefs, desires, intentions, imagination, emotions, etc.) that cause action. In brief, having a theory of mind is to be able to reflect on the contents of one’s own and other’s minds. Difficulty in understanding other minds is a core cognitive feature of autism spectrum conditions. The theory of mind difficulties seem to be universal among such individuals.” (Baron-Cohen 2001, 3)
There have been several flaws in Simon’s thinking as posted by other readers. These arguments have the commonality of having been sustained with personal, almost philosophical arguments. As you pinpoint sometimes the characterization of autistics as lacking theory of mind is an insult as to their human nature. I have already addressed many defects in the theory of mind argument in previous blogs. Anybody interested in reading them can do a search at the first page of my blog using Theory of Mind as search words.
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While I disagree with much of what Baron-Cohen has written,I think the inability to comprehend these mental states of both oneself and of others is a key feature of autism.It may not be for higher functioning individuals,but it certainly is for those on the lower functioning end of the spectrum.I should know.I have come back from low functioning autism,and was often not able to understand these things in myself,let alone in others.
This could be one reason Baron-Cohen is not highly thought of in the neurodiversity movement? That his theory of mind describes what is basically low functioning autism,a condition completely alien to those in the neurodiversity movement.
Odd then,that Baron-Cohen should be such an advocate of neurodiversity,and have done much of his research with higher functioning subjects.
I have to agree with Simon and Roger – the inability (or a weakened ability) to comprehend the mental states of others and even oneself is a key part of autism. That has certainly been the situation with me, all my life. As I’ve gotten older my ability to read others via logical processes and analysis has improved but I am aware it’s still weak. My sense of what’s going on in myself is weak too. I know that, and so his remarks did not bother me. For me, they are reality.
It’s also worth pointing out that this is not a matter of opinion, subject to our discussion and disagreement. It’s been a part of the ICD and DSM definitions and remains so. It’s explicitly tested in diagnostic tools like ADOS. Given that, I am surprised people find his use offensive.
Here is the relevant passage from DSM:
A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text):
1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.
I don’t think it can be said enough that many of those in the neurodiversity movement have a very limited picture of what autism is.They completely ignore the impact that comorbid medical conditions have on the brain and behavior.This is especially true of both metabolic and mitochondrial disorders,and of autism where there is autoimmune disease,such as autism with PANDAS or PANS.The body is a very complex organism,and there are may systems and biochemical functions than can interact with the brain,and greatly impact behavior.
Even in those who may not have these conditions,but who have autism as well as psychiatric disorders,such as bipolar disorder,there are any number of processes in the brain,that can directly impact the severity of the autism.Our family has been effected by both,so I know what I am talking about.Those who may be higher functioning,but have autism as well as psychiatric disorders,can be just as disabled,in their own way,as someone with mitochondrial disease or intellectual disability.I have seen this in my own family.
Christopher Gillman speaks of “autism pure” VS “autism plus”.My only problem with Gillman’s definition is that it is too narrow,and does not include enough conditions.The problem with neurodiversity,as I see it,is they see all autism through the lens of “autism pure”.I am not sure just how big or how small a percentage of all autism this makes up.
It has been said that one reason antivaccine parents stick to their disproven beliefs,one reason they subject their children to dangerous treatments like chelation and bleach enemas,is that they are in denial that their children were born with serious medical problems and disabilities.This sounds a lot like what Baron-Cohen is saying here.Neurodiversity and antivaccine are two sides of the same coin.A third consensus of seeing autism is desperately needed.
Roger, you say many of those in the neurodiversity movement have a limited understanding of autism.
It’s important to realize that there is no coherent “neurodiversity movement” in the sense that there is no organization or recognized leadership. What we have are a bunch of people who espouse some notion of neurodiversity.
And the definition of neurodiversity itself is not constant from one person to another.
It’s important to recognize that you speak to a bunch of individuals when you talk about these issues, and as individuals they have widely differing opinions. The best any of us can do – and I try to do this – is publish reasoned arguments and articulations of our various positions so people can consider them in their own time, and respond.
“Disorder implies a biomedical cause.” I am really puzzled, help me out please: Baron-Cohen is arguing against a biomedical cause of autism, and proposes what other cause in its place? Voodoo magic??
From what I remember Baron-Cohen kept coming up with both genes and prenatal testerone as causing autism. Last I checked both genes and testosterone were firmly part of human biology.
Or is B-C trying to tell us he has quietly departed from his favourite biomedical causation theories and that he is viewing autism in some sort of religious light now? Autism being just a different human ‘condition’, another manifestation of the Divine Spirit, born through Immaculate Non-biological Conception??
While many in the neurodiversity movement view autism as genetic,they see it as no more benign than left or right handedness or eye color,Many have gone so far as to say autism is an inborn gift,like musical talent.