Autism Research Might Be Missing The Forest For The RRBs
Lauren Schenkman, writing for Spectrum, interviewed researcher Mirko Uljarević on the “restricted and repetitive behaviors” component of the current, mainstream view of autism pathology. Uljarević suggests that the Diagnostic and Statistical Manual “may erroneously lump together distinct characteristics” in this area.
According to Uljarević and his team, the realm of RRBs actually consists of three, separate things: routines, rituals and insistence on sameness in others’ behavior.
The ritualistic subdomain is related to needing objects in one’s environment to be arranged in a particular or “correct” manner, according to the person — for example, arranging the cushions on a couch according to certain rules. It can also mean repeating certain rituals over and over until an intrinsic sense of things being “just right” is achieved.
Routines capture behaviors that are performed in the same order each time, typically to achieve an instrumental goal. For example, a child might want to always prepare for school or bedtime in exactly the same way.
The third type, sameness focused on others, includes insisting that other people follow specific routines or rituals. For example, insisting that others say specific things or respond in a particular way during social interactions. This type is really interesting, because whereas the previous two types we can all relate to, to various degrees, this third factor is less commonly seen outside of autism.
I’m not here to delve into Uljarević’s research take here, specifically. What’s important for my purposes is why people might think figuring this out is so important. At the prompting of Schenkman, Uljarević engages with one possible reason.
The DSM is currently collapsing behaviors into the same category when they might have different mechanisms. And if you don’t know the mechanism behind the behavior, you’re not really able to intervene properly.
This isn’t a search for knowledge qua knowledge. It’s a search aimed toward unspecified “interventions”, which in the autism world usually means actions taken to reduce some aspect of what’s view as the pathologies of autism. In other words, to reduce restricted and repetitive behaviors because they are viewed through the lens of normativity as inherently problematic.
If you’ve been reading me for awhile, I’m riding a hobby-horse here: I believe that what we call autism spectrum disorder might better be termed something like sensory processing disorder with monotropic tendency. In this conception, the things we normatively pathologize about autism actually are the adaptive strategies the autistic brain has evolved over time to accommodate, manage, and mitigate the underlying atypical susceptibility to stimuli.
To be clear, the study itself does in passing briefly touch on such ideas at least once without much in the way of elaboration.
One possible explanation for this finding might be that, for autistic individuals with high anxiety, IS behaviors may be an important method of self-regulation, meaning individuals with high anxiety who do not use these behaviors to self-regulate may be more likely to show higher levels of emotional dysregulation.
The study doesn’t, however, directly engage with what this means, and, as noted, at Schenkman’s express prompting Uljarević does talk about interventions.
Researchers looking for the real and true “interventions” with it comes to autism, don’t need to spend waste time figuring out if RRBs are all the same thing or three or four or fourteen different underlying things.
Instead, we should center autistic agency and work to reduce the normative pressures that might provoke any RRBs that the autistic person themselves might wish to reduce (or, indeed, ones that objectively are dangerously injurious to themselves or others), while at the same time recognizing that there might not be cause or need, in fact, to reduce the autistic behaviors at all. More, doing so could make things worse for the autistic person in question.
Autism research is getting better, slowly, but it’s not going to progress to being truly useful to actually-autistic people until it drops the normative lens that in fact is inverting the true image of the autistic brain and nervous system.