Without letting them get you down.
By Rose Ernst
Surreal is the best word for it.
Here you are, just trying to understand what autism is and what it all means. The article looks official, and yet those professors are calling you names.
Check out these article titles:
“Autism Spectrum Disorders: Translating human deficits into mouse behavior”
“Hippocampal contributions to social and cognitive deficits in autism spectrum disorder”
“Social Skills Deficits in Autism Spectrum Disorder: Potential Biological Origins and Progress in Developing Therapeutic Agents”
You’re a lab rat. You’re a problem. You’re deficient.
It’s a classic oppression setup. Other people are talking about you behind your back, diagnosing what’s wrong with you, and subtly (or not so subtly) how they’re superior.
The kicker is that they’re likely well-intended researchers (similar to the widespread use of “contingent electric skin shock” against autistic children until recently).
What’s worse is there’s often a useful gem amid the nonsense and noise. An insight that’s actually helpful.
So how can you read these articles without letting them make you feel broken?
As an academic editor and former professor, I understand why these articles are written this way. It’s a norm, a genre, and a formula.
And we’ve made progress since 1981 when the US government produced publications calling for electric shocks to be used against autistic children in schools. “Problem” behavior included:
“rocking, inappropriate questions, shoe-gazing, thumbsucking, inappropriate conversation, inappropriate touching and nonsense talk.”
Yes. You read that correctly. “Shoe-gazing” was called a problem behavior, as was “nonsense talk.”
Some researchers are changing this, particularly those who are autistic themselves (such as Dr. Damian Milton). It is possible to write about important scientific findings without denigrating the people involved.
While I love these articles, other deficit-based articles are still popping up.
Let’s see how to approach them.
Before you glance at the first sentence, make this commitment: I will insert “neurotypical” (NT) next to each deficiency in the article.
Here’s one example:
“The goal of the present study was to examine the link between poor attention to social information and mindreading abilities in children with autism spectrum disorder (ASD).” — Burnside, Wright, and Poulin-Dubois (2017)
Note: I love how everyone is supposed to have “mindreading abilities.”
Let’s reframe this study:
“The goal of the present study was to examine the link between poor attention to NT social information and NT mindreading abilities in autistic children.”
Here’s another example:
“Children with ASD may have difficulty developing language skills and understanding what others say to them.” — National Institute on Deafness and Other Communication Disorders
“Autistic children may have difficulty developing NT language skills and understanding what NTs say to them.”
Using a disability justice frame — meaning that society creates the disability rather than the other way around — helps us find the nugget underneath the avalanche of dehumanizing words.
Besides, this reframing is actually more accurate than the original sentences. Dr. Milton’s double empathy problem shows that “communication” is defined implicitly as neurotypical communication: autists can and do communicate well with one another.
This doesn’t mean autistic people don’t have real challenges. We do. But as long as the “norm” remains hidden, the falsehoods and injuries will continue.
If you do all this but still feel bad, turn away from the screen.
You’re just perfect as you are, my friend.