I’d like someone with more patience and fortitude than I have to take a close look at this recent study about autistic midlife and tell me if my initial, cursory response to it seems valid, because the thing that nags at me about it is that not once does the paper reference or use the words masking or camouflaging, which I’d think would be relevant to what the paper finds.
There were significant trajectories of age-related change for all but one of the measures, although different measures manifested different patterns. Most autism symptoms improved through adulthood, while health worsened. An inverted U-shaped curve best described change for repetitive behavior symptoms, activities of daily living, maladaptive behaviors, and social interaction. For these measures, improved functioning was evident from adolescence until midlife. Then change leveled off, with worsening functioning from later midlife into early older age. Additionally, differences between autistic individuals with and without ID were evident. Although those who have ID had poorer levels of functioning, there were some indications that those without ID had accelerating challenges in their aging years that were not evident in those with ID – increases in medications for physical health problems and worsening repetitive behaviors.
Emphasis mine, because when I read those sentences the trajectories described read to me like a description of an adulthood spent masking and then a midlife where it all catches up with you.
It’s important to note that the sorts of behaviors they measured include large swaths of the behaviors I argue are pathologized when in fact they are the adaptive behaviors of the autistic brain to accommodate, manage, and mitigate the actual, underlying condition. In other words, autistics who have less “unusual or repetitive habits”, “withdrawal or inattentive behavior”, “disruptive behavior”, or “uncooperative behavior”, for example, are considered to be functioning well.
We know, of course, that routines and stimming (“unusual or repetitive habits”), hyperfocus and shutdown (“withdrawal or inattentive behavior”), meltdown (“disruptive behavior”), and demand for autonomy (“uncooperative behavior”) in fact are survival mechanisms the brains and nervous systems of autistic people utilize to self-regulate. Autistic adults who before midlife exhibit fewer of these behaviors, then, likely are masking, the overuse or long-term use of which is known to be detrimental to autistic health and risks triggering events such as autistic burnout.
[…] The first pattern was significant improvement over the adolescent and adult years, evident for two of the measures that comprise the diagnostic algorithm of autism (impairments in social reciprocity for those who do not have ID, and impairments in verbal communication regardless of ID status), both of which became linearly less severe as individuals aged. […]
Second, a prominent pattern of significant worsening over the adolescent and adult years was observed for all three indicators of health – ratings of health worsened and the numbers of prescribed medications for both mental health and physical health symptoms increased with advancing age. […]
These first two patterns (improvement, worsening) reflect continuity across the study period, when patterns that are evident in adolescence and early adulthood continue into midlife and older age. In contrast, for the other measures we evaluated, there was a pattern of discontinuity during the study period, reflecting improvement during adolescence into adulthood, followed by a levelling off, and then worsening in midlife and beyond. This pattern of discontinuity was characteristic of activities of daily living, maladaptive behaviors, repetitive behavior symptoms, and socializing with friends and relatives. At midlife, independence in daily living skills peaked, behavior problems and repetitive behavior were at their lowest level, and interaction with friends and neighbors most frequent. […]
Again, to me, the trajectories described in this paper read to me like a precise description of an adulthood spent masking and then a midlife in which either the autistic finally stopped making, or the adulthood spent masking caught up with them, or both. Yet the very idea of camouflaging never makes an appearance in the analysis.
Well, that’s not entirely true: camouflaging behaviors are read and represented by the authors instead as “functioning”.
Coincidentally, there’s another recent paper exploring camouflaging, stress, and emotion regulation that underscores the impact masking has on autistic health.
[…] Camouflaging involves the masking of autism traits, potentially creating an outer impression of “non-autisticness.” Although associations of camouflaging with anxiety and depression in autistic adults are widely reported, factors that mediate these associations are unclear. We examined two potential mediators of the association between camouflaging and anxiety/depression: perceived stress and emotion regulation (ER) challenges.
We contextualize the findings within the broader literature on camouflaging as a response to stigma and other facets of minority stress. We discuss how the results of this study support the idea that the day-to-day stress of living in a neurotypical world, the cognitively demanding nature of camouflaging, and the constraints that camouflaging place on autistic people’s behaviors in social contexts (e.g., contributing to suppressing ER strategies such as stimming), create a cycle that contributes to elevated rates of anxiety and depression in autistic people.
None of this will come as a surprise to any actually-autistic people, and one of the ways in which the midlife study determined health outcomes was to look at the numbers of medications prescribed to autistic people, including those prescribed for mental health conditions. Effectively unaddressed is what mental health conditions and what might be the causes. Or, for that matter, whether a given medication might be contributing to masking behaviors.
Combined with prominent use of parent report of the health levels of the autistic people themselves, and that’s a pretty good recipe for describing and reporting “normatively conforming outward behavior” as functioning and health.
You simply cannot in good faith longitudinally research health outcomes over the course of an autistic person’s life if your approach is to treat our adaptive strategies for survival as pathologies and view masking as functioning. You have to engage with these issues else your results for all intents and purposes mean absolutely nothing for your purported goal of improving the lives of actually-autistic people.