Academia needs to be more accommodating and welcoming to neurodivergent contributors so we stop getting handed crap like this.
In (one of) today’s annoyances, ableist organizations are, once again, mischaracterizing scientific research in order to serve their own agendas.
Last week, child neurologist Dr. Evdokia Anagnostou from the University of Toronto (in my home province of Ontario, Canada), gave a keynote speech at the annual meeting of the International Society of Autism Research (INSAR).
Dr. Anagnostou is being lauded for apparently challenging how we think about the autism spectrum. (Autistic people have been doing that for decades, but nobody ever listens to us).
Great! I thought. Hopefully more researchers are challenging the misguided ideas behind functioning labels, helping to provide a more accurate picture of what it means to be Autistic.
That could be it, right?
Was I ever wrong.
Did she just assume nobody would actually read the research?
The esteemed neurologist did quite the opposite of what I had hoped, in fact. According to INSAR and the so-called “Autism Science Foundation”, Dr. Anagnostou claimed there exists data to support a new label of “profound” autism.
I’ve looked and I can’t find said data anywhere. Is there a data lost-and-found I can check?
The only research cited publicly to support this dubious claim is a 2019 study which demonstrated significant overlap between traits of autism, ADHD, and OCD — again, something people in the neurodiverse community have been saying for decades.
Guess who was part of that study?
Yep. Dr. Evdokia Anagnostou was one of the primary researchers named in this study, the results of which she is now apparently misrepresenting. The study involved MRI brain scans of 226 neurodivergent children, aged 6–18 years, performed at the Hospital for Sick Children in Toronto.
According to her own research paper, what the results did show is: There is very similar neurology between autistic, ADHD, and OCD brains.
That’s it.
Dr. Anagnostou has apparently taken this to mean we should create a separate diagnosis or functioning label of “profound” autism. I may not be a neurologist, but I’ve read a lot of scientific journals and textbooks. I read and re-read this study and, for the life of me, I cannot figure out how the good doctor came up with that conclusion.
What the paper actually found
The study participants were primarily 9 to 11 year autistic children. Out of 226 kids, 112 (half) were autistic. Only 58 had ADHD, and only 34 were diagnosed with OCD. A sample size of 34 out of 226 participants is only 15%, making extrapolation of results extremely difficult (and irresponsible).
Even 226 is a relatively small number as far as research studies go. The sample size and diversity were very narrow, which the authors indicated in their limitations section.
There were some interesting conclusions drawn by the research team — A team which consisted of 10 doctors, not just Dr. Anagnostou — which make me wonder what the other clinicians think of Dr. Anagnostou’s characterization and misuse of their research.
Anyway.
“Our results are consistent with the notion that the ASD-like features, and to some extent inattention traits, exist across a continuum that includes typical development.”
— Kushki, Anagnostou, et al.
You don’t say! Because Autistic (and ADHD and OCD) traits are human traits, therefore it stands to reason we might have some fairly human-like characteristics, if you’ll permit me to be so bold.
“This motivates models of neurodevelopmental disorders which focus on continuous variations in traits instead of categorical diagnoses defined based on qualitative cut-offs.” — Kushki, Anagnostou, et al.
Gee, I wonder why nobody has thought of that before?
Oh wait, we have! Yet again, the Autistic community has been saying that behaviourally-based diagnoses are often biased and flat-out incorrect, but what do we know, right?
The autistic community has also been trying to explain to anyone who will listen (which apparently does not include neurotypical researchers) that the current conceptualizations of an autism “spectrum” and functioning labels are inaccurate, and in some cases cause harm.
Functioning labels are ableist and harmful
A person is not simply “low functioning” or “high functioning”. Everybody varies between high, medium, and low-functioning throughout their day depending on a large number of factors.
This includes the context or environment they’re in; the level of support, accommodation, and understanding they receive; their health and mood that day; and a myriad other factors.
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