Also functioning labels are ableist and harmful
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.
My husband and son are both “low functioning” if they don’t get enough sleep, whereas I am used to sleep deprivation, and can get by on less sleep.
I might seem “low functioning” at a party or large social gathering because I’m socially awkward, introverted, and despise small talk. Unless that conversation turns to one of my special interests, then I might seem “high functioning” because I am very knowledgeable on those subjects!
My son seemed low functioning at his former school because they did a terrible job of supporting him and he was miserable there. At his new school he is flourishing and doing well, and so he now appears “high functioning”.
It’s neither binary nor fixed — it’s constantly fluctuating and highly complex. Different people have a variety of different needs, and those needs change frequently, depending on the context and the environment.
I am self-employed and have run a successful business for 12 years now. I usually appear “high functioning” in that role because I know what accommodations I need and how to provide them so I can do my best work.
What it boils down to is I succeed in my work because my support needs are being met. I am less successful in a lot of social environments because the NT majority aren’t aware of — and therefore cannot accommodate — my support needs.
It doesn’t really have to do with being neurodivergent (ND) or neurotypical, it has more to do with being in the minority versus the majority.
When I’m surrounded by fellow ND people, I usually flourish because our social norms and expectations are more in sync. As a result, we better understand each other and can generally make each other feel more comfortable.
Hey look, I’m high-functioning again!
Bottom line
At first, I couldn’t figure out why Dr. Anagnostou would be pushing for an even scarier-sounding label of “profound” autism… then I looked at the declared conflict of interests.
Dr. Anagnostou is a consultant for Roche Pharmaceuticals — interestingly, the declared conflict only stated the company’s name, Roche, and did not even indicate that it is a pharmaceuticals company.
(Don’t worry, I’m not going all “big pharma” here, I am generally pro-pharmaceuticals if they help people, but that’s a different story for a different day).
Even more concerning, Dr. Anagnostou has received grant funding from a company called SynapDx. Yes, it’s what you think — they were a laboratory working on developing a blood test for autism to facilitate “early detection” and diagnosis.
They’ve since gone out of business, or perhaps they were bought out by a larger company, in order to quietly continue their research under a different name.
*Sniff sniff* …Oh dear. It smells faintly of eugenics in here…
Unfortunately, it does get worse.
In January 2020, Dr. Anagnostou made national news with drug manufacturer Hoffmann-La Roche after they commissioned a research study for a drug to “treat autism symptoms”.
See, if we had more Autistic researchers — or if researchers even deigned to listen to Autistics — they would know the vast majority of Autistics don’t want treatment or a cure, we simply want acceptance and understanding.
What about a drug to treat eugenicism? Now that certainly seems to be a devastating psychological disorder.
© Jillian Enright, Neurodiversity MB
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References
Kushki, A., Anagnostou, E., Hammill, C., Duez, P., Brian, J., Iaboni, A., Schachar, R., Crosbie, J., Arnold, P., & Lerch, J. P. (2019). Examining overlap and homogeneity in ASD, ADHD, and OCD: a data-driven, diagnosis-agnostic approach. Translational psychiatry, 9(1), 318. https://doi.org/10.1038/s41398-019-0631-2
Martin, N. Practical Scholarship: Optimising beneficial research collaborations between autistic scholars, professional services staff, and ‘typical academics’ in UK universities. In Bertilsdotter Rosqvist, H., Chown, N., & Stenning, A. (Eds). Neurodiversity Studies: A new critical paradigm. Routledge.
Mason, D., McConachie, H., Garland, D., Petrou, A., Rodgers, J., & Parr, J. R. (2018). Predictors of quality of life for autistic adults. Autism research : official journal of the International Society for Autism Research, 11(8), 1138–1147. https://doi.org/10.1002/aur.1965
McCracken, J. T., Anagnostou, E., Arango, C., Dawson, G., Farchione, T., Mantua, V., McPartland, J., Murphy, D., Pandina, G., Veenstra-VanderWeele, J. (2021). Drug development for Autism Spectrum Disorder (ASD): Progress, challenges, and future directions. European Neuropsychopharmacology, 48, 3–31. https://doi.org/10.1016/j.euroneuro.2021.05.010