As I noted yesterday, even researchers whose ultimate ends might differ as to the necessity of “interventions” are starting to come around to the idea that autistic “experience doesn’t really map onto the DSM category”, and that an atypical susceptibility to stimulus overwhelm might be at the core of what we consider to be autism.
In one of my earliest writings on this idea, I outlined what I was beginning to suspect about the pathologies of autism.
Restricted interests and rigid thoughts and behavior aren’t the pathology. Instead, inhibited filters against stimulus and limited attentional resources are the pathology; the restrictedness and rigidity are the adaptations to manage that pathology.
There’s a little bit of monotropism here, in that monotropism is about attentional resources and its theorists suggest that “the restricted, repetitive and stereotyped patterns of behavior and activities and the restricted interests … follow from the monotropic tendency”.
(By the way and parenthetically, I’ve recently learned that monotropism has its own website now, intended as a resource about it both as a theory and a trait.)
I’d meant this week not to write about Jonathan Green’s paper about neurodiversity but about one by Lynne McCormack, Sze Wing Wong, and Linda E. Campbell about the role of restricted and repetitive behaviors and the views of four autistic people on the interventions imposed upon them as children to reduce them.
I’m not going to go into everything the four subjects had to say here. Instead, I want to include the way in which the authors talk about autism and RRBs.
Here they are early in the paper:
Evidence suggests that people diagnosed with autism are neurologically hyper-responsive to sensory stimuli. For example, sensory responsive behaviours (i.e., extreme negative response to, or avoidance of, sensory stimuli) may be associated with heightened responsivity in the primary sensory areas and those areas related to emotion regulation and processing (i.e. orbital-frontal cortex, hippocampus and amygdala). Indeed, recent studies have found that sensory hypersensitivity is strongly related more broadly to RRBs, not only among autistic but also neurotypical children. As such, stimming, resistance to change, and a predilection for routine, may each serve as adaptive coping strategies in response to an overwhelming, novel, and ever-changing environment. However, it is important to note that different types of hyper- or indeed hypo-sensitivities may be linked to different types of RRBs and serve different functions.
And here they are again at the end:
Individuals diagnosed with autism are often neurologically hypersensitive to sensory stimuli, they have trouble with filtering and processing sensory information and are often overwhelmed by stimuli in the environment that other people may not even notice. As a result, autistic individuals may engage in sensory modulation behaviours to regulate their sensory experience. Similarly, the participants of this study recognised RRBs as innate coping mechanisms to overcome an overwhelming environment providing a calming rhythm to maintain focus. One participant highlighted that RRBs are emotional regulation strategies, and the restriction of RRBs causes agitation. Recent qualitative research supports the view that autistic adults see stimming (i.e., an RRB) as a self-regulatory behaviour with many positive effects experiencing negative consequences when they are forced to repress them.
This all is essentially what I mean when I say that my own subjective experience of being autistic tends to support the idea that the behaviors clinicians are taught to look for—the so-called pathologies of the DSM—aren’t what they are made to appear to be.
The classic signs of clinical autism, which in many ways are a description of the monotropic tendency, begin instead to look a lot like adaptive self-regulatory strategies of the autistic brain addressing the actual, underlying initial and inciting neurodivergence, which is the atypical susceptibility to stimulus overwhelm or “inhibited filters against stimulus”.
In essence, maybe we’re looking at two different things combined as what we refer to as Autism: an inciting neurodivergence that perhaps requires its own name—for our purposes here let’s call it Sensorium Dysphoria—and then the typically co-occurring and somewhat compensatory Monotropic Tendency that’s evolved to manage it.
I’m not literally suggesting that we rename Autism Spectrum Disorder to Sensorium Dysphoria with Monotropic Tendency, but I am suggesting that this is the true nature of autism.
(This isn’t a rabbit hole I want to go down right now but it rather makes me wonder if the sorts of autistics for whom some want to use the term “profound autism” are those who either have a more intense Sensorium Dysphoria else a Monotropic Tendency insufficiently developed to manage it.)
All those things we pathologize about autism, the clinical signs we tell people to look for, perhaps are not directly signs of autism but in fact and instead the signs of the autistic brain working to accommodate, mitigate, and navigate the inciting neurodivergence of Sensorium Dysphoria.
When it comes to interventions, no action is possible until and unless we ask a simple question: does the “problem” with RRBs originate with the RRBs themselves, or with the normative and neurotypical reaction to and view of them? It’s true that if it’s the latter, this spells some degree of trouble for clinician or practitioner billable hours.
Until and unless those adaptive strategies cause an overt harm or violence to the autistic person or those around them—and that very much does not mean merely the discomforting of neurotypical or normative sensibilities—seeking to inhibit these strategies itself directly contravenes the admonishment, “First, do no harm.”