Ableism Is So Embedded That Researchers Don’t Realize What Their Study Says

Recently disabilities got added to the classifications for medical research, and given studies like this, it’s about damn time.

I first saw it published in HCPLive a week ago: Autism Diagnosis at Toddler Age May Not Persist to Elementary School Years. I hoped at the time that it was another example of bad science reporting.

It wasn’t. The actual study, "Persistence of Autism Spectrum Disorder From Early Childhood Through School Age," has so much embedded ableism that the researchers do not seem to realize what their study actually says. The study says that toddlers diagnosed with autism may not be diagnosed as autistic once they reach elementary school age.

The entire design of the study disregards the autistic experience and voices of those it examines. It does not consider that the children, as they grow older, may be learning to mask to hide their neurodivergence in order to better fit in.

The authors also completely treat autism as simply how inconvenient it is to allistic people — something that is amplified in the reporting (emphasis mine):

All of the children in the study received interventions based on the diagnosis. The most common intervention used was applied behavior analysis, which is a therapy that focuses on increasing helpful behaviors and decreasing unhelpful ones.

If you don’t understand why that is problematic, take a moment and read "The Casual Disregard of the Neurodivergent Voice."

The study does not examine how autistic children think or learn or perceive information, and instead focuses entirely on how much they meet disability criteria.

The authors even invent something called "non-persistent autism" because otherwise their whole framework falls apart.

They came so close when they said that those with higher baseline scores and women tended to have this "non-persistent autism".

Female children were more likely to no longer meet the criteria, as were those with "higher baseline adaptive skills," according to the study findings.
Fox News

What the study actually shows is that the diagnostic criteria is kind of full of crap, as we realize that quite a few people — most notably women — have not been properly diagnosed with autism.

The study is not total garbage. It simply does not show what the authors think it shows. What it actually is showing, as a user on Mastodon pointed out, is not anything about autism "going away".

The study shows that autistic people are more likely to misdiagnosed as allistic once they are no longer toddlers.

The information is right there, but because the authors are coming at it from an allistic point of view, they don’t see that they’ve shown that the existing mechanisms for diagnosing autism are imprecise at best and deeply flawed at worst, which is exactly what the autism advocacy community has been saying for a long time.

Nearly all prior autism research needs to be approached with this kind of skepticism. For example, a 2014 study implies that PTSD in a mother is a risk factor for autism, but what they were probably actually measuring was undiagnosed autistic mothers who had CPTSD from being autistic (and female-presenting) in our society. As they did not even recognize that possibility in the study, it’s impossible to tell for sure.

These fundamental problems in study design also indirectly give a lot of support to the idea and validity of self diagnosis.

Because if the official diagnostic criteria is so flawed that it can’t pick up autism in children once they’re a little bit older, then how can it possibly be accurate enough for adults?

Featured Image by Michal Jarmoluk from Pixabay