This is the internet weblog of Bix Frankonis.

Autistic Erasure, Or Accommodation?

There’s apparently some sturm und drang over this new study on the developmental impacts of a self-described “preemptive intervention” conducted with parents of potentially-autistic children.

But the premise of the study—what Bottema-Beutel calls a preemptive intervention to keep people from becoming autistic—raises ethical concerns, she says. “Many autistic traits are just differences, they’re not necessarily something that’s going to make it more difficult for you to achieve developmental milestones.”

The team is sensitive to this concern, Whitehouse says. “Our focus on supporting parent-child interactions is to support and enrich the social environment around the baby—creating learning opportunities for the baby that are tailored to the child’s unique abilities.”

I had to take a tutorial on how to read a forest plot in order to understand which autism traits were found to be reduced, but I’m not entirely sure the intervention in this study in fact is meant “to keep people from becoming autistic”—with one notable caution, which I’ll get to below.

Looking at eFigure 1 in the supplemental materials, the reduced traits appear to be deficits in social-emotional reciprocity, stereotyped or repetitive movements, and unusual sensory interests. The traits showing no reduction, or (in the words of that forest plot tutorial) an apparent reduction that isn’t “statistically significant” appear to be deficits in nonverbal communication, deficits in developing relationships, insistence on sameness, and highly restricted, fixated interests.

(I’m letting the deficit-laden language in the original stand here, because I simply don’t want to spend time translating everything into difference-based language; it’s also important to not hide the language researchers use, although sometimes it’s “merely” academic inertia.)

There’s a way to read these results that very much isn’t about keeping people from becoming autistic.

Two of those reduced traits essentially relate to stimming, a self-regulatory behavior that frequently emerges when an autistic person is under stress or duress (notwithstanding that, of course, some stimming is what autistics often call “happy stimming”). The third reduced trait, relating to social and emotional reciprocity, very well could be a result of the specifics of the intervention in question.

That intervention purports to be one in which the parent is taught how to better understand and relate to their potentially-autistic child.

One part of the intervention encourages the parent “to observe their child closely and to recognize the pace of the infant’s exploratory behaviours and to match […] responses accordingly”. Another seeks “to reinforce parental empathy with the infant’s affect state”. Yet another encourages the parent “to respond to a range of infant behaviours and match […] responses to the behaviour of the infant”.

These parental interventions do not strike me necessarily as erasure. They strike me potentially as accommodation.

That said, the intervention does make mention of eye contact, which bizarrely is something of an intractable fetish for early interventioners (despite eye contact being more complicated a social construct than we are led to believe). It makes some sense to me, the sturm und drang, in the context of the studied intervention of using eye contact as some sort of proxy for successful social communication.

That said, given the specific so-called autism traits this intervention appeared to reduce, I feel like there could be more here than just fodder for the (rightful) culture of autistic criticism surrounding interventions such as Applied Behavior Analysis, a “treatment” which mostly just seeks to impose masking behaviors upon autistic kids so they “fit in”.

If somewhere within this intervention is parental guidance and training which teaches them to meet their potentially-autistic child where they are, and so reduces the environmental stressors of being autistic in a normative, allistic world, I’d think that would be something worth exploring.

Just: please abandon the fetish for eye contact.

After writing the above, I ran into this article in which one researcher on the study explained that rather than seek “to replace developmental differences with more ‘typical’ behaviours” like many other early interventions (such as ABA), the intervention studied here “works with each child’s unique differences and creates a social environment around the child that helps them learn in a way that was best for them”—noting that the intervention appeared to have “reduced stress in their lives”.

In addition, the study’s lead investigator issued a statement to counter what he called “some inaccurate headlines regarding our latest research”.

The therapy we tested, iBASIS-VIPP, is not delivered directly to the babies, but instead focuses on guiding parents as they seek to engage and support their child. Rather than trying to counter neurodivergence, the therapy seeks to help parents understand the unique skills and abilities of their baby, and how they can best engage in a way that makes their child feel perceived and understood.

All of which is consistent with my initial impression of the study, with the exception, as noted above, of utilizing eye contact as some sort of relevant social communication metric, which continues to perplex and disturb me. On balance, however, it does seem as if much of the critical response must have come from people who either did not read the paper, or did not understand it.

This post originally was published 1 year ago by Bix Frankonis on Posts older than a decade might not reflect my current views.