Researchers are finally turning their attention to autistic adults and trying to figure out factors that affect their quality of life. In a series of presentations at the international autism conference IMFAR in San Francisco, UK scientists showed what happens when you survey autistic adults and ask them where their lives might be improved.

Several interesting if not unexpected findings emerged from the suite of presentations in the panel on “Measuring and Predicting Quality of Life in Older Adults with Autism.” It’s a question that’s been a long time in the asking.

First, in one cohort of autistic adults, researchers asked participants on a questionnaire if they were male or female, and 13 of the 370 respondents said that they had no binary response to that question. That result seemed noteworthy enough for comment at the meeting, although it’s becoming increasingly clear, at least anecdotally, that in the autistic population, not identifying in the male–female binary is a common response among autistic people. It seems fitting that people who have a place in a varied and diverse spectrum bound by a common set of traits might also embody and visualize for themselves a similar spectrum of sex and gender.

Across the board, the series of presentations repeatedly indicated that autistic adults tend to report a lower quality of life compared to nonautistic adults. That’s not surprising given the lack of recognition in some quarters that autistic adults even exist and lack of infrastructure in place for this community. Indeed, the very novelty of these presentations, delivered to a packed house, attests to the fact that we’re only at the beginning of learning and asking what autistic adults need.

Among factors that emerged as influences on the reduced quality of life that autistic adults experience are factors related to social experiences and psychological distress. Some findings seem to point away from age as having a role, but in one set of results that Hilde Geurts from the University of Amsterdam presented, one in two autistic adults in her survey reported having a low sense of well-being. That’s half of autistic adults who don’t feel great about their lives. If this were a conference focused on most other groups, that finding would be a headline. So I made it one here.

These survey studies also revealed a weak point when it comes to instruments normed to neurotypical populations: they literally do not translate well to autistic respondents. As an example, Helen McConachie of Newcastle University noted that the phrasing of questions in the quality of life questionnaire (WHO QoL-DIS) that her team used really threw off many of the adult autistic participants. One question asked about how the autistic adult felt about their bodily appearance. An autistic respondent drily and accurately noted, “I haven’t got a lot of say in the matter,” basically observing that when it comes to bodily appearance, you get what you get. They did note, however, that they do go to the gym.

Another presenter, Amanda Roestorf of City University of London, looked at what happens with a specific kind of memory called prospective memory in autistic people as they age. Prospective memory, said Roestorf, is the ability to “remember to remember,” to retain and remember a mental to-do list for the future. She also found lower quality of life among autistic adults compared to non-autistic adults across all domains measured.

Her data were preliminary, but she also reported specific differences associated with prospective memory in autistic adults compared to nonautistic adults. One possible consequence of such differences is that autistic adults may have greater difficulty navigating arenas like healthcare, including medication adherence, with age. She concluded her findings by asserting that there is a “different kind of aging for autistic adults than for nonautistic adults.”

The focus at IMFAR on an autistic perspective and autistic adults represents a change in attitudes and emphasis at this enormous international conference over the years. Five years ago, the phrasing in most of these talks was “people with autism” and “subjects” with a distinct tone of condescension, and the populations in the studies were mostly boys. This year, people are “autistic people,” the tone is one of much greater respect and care, autistic people were visible and participating, and researchers seem to have realized that not all autistic people are little boys. Looking at the arc of language in autism research over the last decade-plus, this new tone and language present as stark a contrast to earlier years as the shift in research questions themselves.

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