After Simon Baron-Cohen suggests autism lose its status as a disorder and instead be considered a variant like left-handedness or homosexuality, this stupefied mom marvels at the collapse of meaning in the word “autism.”
by Jill Escher
I’m the mom of two kids with profound neurodevelopmental impairments, labeled by multiple esteemed practitioners as “autism.” At ages 18 and 11, they can’t read, write, or talk. They have never played with a toy or dressed themselves. They don’t know their birthdays, much less what “birthday” might mean. They are both gorgeous, healthy and utterly delightful, with smiles and personalities that light up the room, but because of their profound mental dysfunctions they will require one-to-one 24/7 assistance for the entirety of their lives, all at astronomical expense to us and society. In short, no reasonable person denies that they suffer walloping mental disorders of the most alarming magnitude.
So imagine my shock reading “Neurodiversity – a revolutionary concept for autism and psychiatry,” by Simon Baron-Cohen, professor of developmental psychopathology at University of Cambridge and the current president of the International Society for Autism Research. In it, he suggests that the field of psychiatry should perhaps view autism as a variant of normal along the lines of homosexuality or left-handedness, rather than as a mental disorder where brain and behavior involve some sort of impairment.
He argues autism may be neurodiversity rather than pathology because it is “associated with cognitive strengths” and is just a form of “diversity in the set of all possible brains.” In his view, the underlying cognition and neurobiology in autism cannot be said to be “dysfunctional,” just “different.” He contends “there is no single way for a brain to be normal, as there are many ways for the brain to be wired up and reach adulthood.”
Say what? How could anyone—much less a person seated atop one of the highest altars of authority and influence in the world of autism—so trivialize my children’s and others’ disabilities by likening them to traits like handedness which are irrelevant to basic mental functioning? Or shrug off the often drastic consequences of abnormal neurophysiology? Hey, my kids have certain strengths, too, like love for music, gentle empathy, and striking athleticism, but those hardly negate the fact my son might eat his shoe. Moreover, isn’t the very purpose of psychiatry to identify and address serious mental impairments that interfere with normal functioning rather than to offer feel-good kumbaya?
Perhaps my delightful yet nonverbal and severely disabled kids really shouldn’t be labeled as having the disorder of autism, as Baron-Cohen seems to suggest. But obviously that would behoove us to define the devastating whomp of a disorder they do have.
It all depends on how you define “autism”
After some fuming, I went back and parsed the editorial to try to understand how Baron-Cohen, a researcher I quite like, could pen something so bizarre. And it hit me. Of course, his autism is not my autism. His version is customized and narrowly drawn, a trait involving quirky social shortcoming, and not a pervasive disruption of development as described by Kanner, as understood through the decades of the DSM, and as understood by me. Though somewhat buried in his argument, it seems he would not deny that people like my kids have disorders, but that he would shoo them away from his conception of autism. He writes:
“Others may say that a child who has language delay or severe learning difficulties is not an example of neurodiversity but has a disorder, and I would support their demand for treatments to maximise the child’s potential in both language and learning. But again, although commonly co-occurring, these are not autism itself.”
In other words, his autism is a bit like a maraschino cherry that may perch atop an ice cream mound of other dysfunctional neuro-stuff that’s not autism. It’s a social quirkiness that can be separated from patent functional impairments.
This is a rather different spin on autism, but okay, why be surprised? Today, semantic anarchy reigns in AutismLand. Your version of “autism” is probably different from the next guy’s. On the TV show The Good Doctor, autism is a genius surgeon, but in my friend Anna’s house, it’s a nonverbal young man who bashes his head 200 times a day. It has come to mean articulate and capable self-advocates, as well as Sonja who at 18 regularly poops on the floor and smears it. It means a focused young woman writing complicated software for a tech company, as well as Marco who can only use a computer to press “want to eat.” Some write of autism as a trait that’s a “gift,” while to my friend Alex it’s a brutal disorder involving shrieking and ripping the skin off his face. Stephen Shore, a great guy who serves on the board of Autism Speaks, calls his autism a “super power,” while ace diagnosticians such as Cathy Lord, PhD, insist “autism is defined by having a significant impairment.”
When one realizes that autism is a purely behaviorally defined disorder, one must marvel that so many contradictory and divergent behavioral realities could be lumped under one term. It’s arbitrary, self-imposed semantic lunacy, as absurd as if we called both the common cold and acute pneumonia “the sniffles.”*
Add to this tension that “autisms” have countless genomic and environmental precursors and myriad neurobiological pathways, all associated with this smorgasbord of traits. To quote researchers Lynn Waterhouse, Eric London and Christopher Gillberg, autism lacks “construct validity” and is an “arbitrary unscientific ‘convenient fiction’” that is blocking progress in research. Or as Mary Coleman, MD, Lifetime Achievement Award honoree at this year’s IMFAR conference, stressed, autism is simply “not valid as a diagnosis,” but rather nothing more than some “overlapping clinical presentations” for myriad different biological conditions with different causes and processes and outcomes.
Our feeble autism lexicon debases our dialogue, fuels unnecessary infighting, and makes a mockery of research. Something must be done. But Baron-Cohen’s approach, while well meaning, would raise the critical question—if people like my kids don’t have the disorder of autism, then what disorder do they have?
If my kids don’t have autism, what do they have?
His editorial doesn’t say. This is a rather glaring omission since his version of autism is the least of my kids’ and many others’ problems. What disables them goes far deeper—killer neurodevelopmental disconnection that keep their brains looping on the same simple tasks over and over, thwarting almost all learning and permanently incapacitating them in multiple dimensions, including communication, social understanding, sensory processing and behaviors. And the name for this profound affliction if not autism…?
In the end, however, I think Baron-Cohen’s editorial is important. He’s right, we should stop pretending there’s such a disorder as “autism.” We urgently need a menu of clear and potent terms that will tie to appropriate medical, educational, and societal responses for all those affected. The professor’s admirable yearning to de-pathologize a certain sector of the autisms adds to the chorus of voices seeking fresh, coherent diagnostic and conceptual structures that reflect our wildly diverse neuro-realities. Good for him. Let’s keep working on that.
* Footnote: SFASA co-founder and board member Sue Swezey notes that Autism Society of America founder Dr. Bernard Rimland “would smile at this analogy.” She says: “He repeatedly cited the fact that, at the turn of the 20th century, upper-respiratory infections were collectively described as ‘the fevers.’ It was not until much later that research teased out the nature, severity, and appropriate treatment for each one. His point was that there is no such single entity as ‘autism’ per se, but that the many conditions lumped under the same label require far better identification and treatment.”
Jill Escher is president of Autism Society San Francisco Bay Area, founder of the Escher Fund for Autism, and a housing provider to adults with autism and developmental disabilities. She is also a former lawyer and the mother of two children with nonverbal forms of autism. Some names of people affected by autism in this commentary have been changed to protect privacy.
Disclaimer: The opinions and assertions stated in the SFASA blog are those of the individual authors, may not reflect the opinions or beliefs of SFASA, and do not reflect the opinions of the Autism Society of America. SFASA is an independent affiliate of the Autism Society of America, the leading grassroots autism organization.
© 2017 Jill Escher. Posted October 16, 2017 at sfautismsociety.org/blog.