Today is Autistics Speaking Day, developed in response to an ill-conceived fundraising campaignfrom 2010 asking people to stop communicating so they could experience being autistic (!). On any day, you get a daily dose of stories about autism-related scientific findings, but how many of these articles include autistic voices? Equally as important, how much autism research focuses on–or even asks–what autistic people themselves, the ultimate consumers of the science, would like to see scientists emphasize?
Having just attended what I think must be the biggest autism research conference in the world, I can confirm that there’s a real dearth of autistic voices in research. Given this paucity, for Autistics Speaking Day, I asked autistic people what scientific research would help them the most. The current emphasis in the research community is on cure, prevention, and treatment. Not surprisingly to anyone paying attention, two of these areas are of little interest to autistics. Treatment that homes in on specific deficits held some value for the respondents, but the top five things they mentioned mostly have to do with help navigating a world that can be quite alien and gaining a better understanding from the other inhabitants of that world.
1. Sensory issues. Topping the list of what autistic people would like to see get more attention are sensory issues and sensory arousal. My respondents told me that ameliorating sensory overload, a huge component of being autistic, might go a long way to easing learning for autistic people, for example.
2. Education. Speaking of learning, one respondent noted, “We waste a lot of energy when people try to force us to learn in ways that don’t work.” Education was a big area where autistic people want research dollars, time, and energy to go, including neurological research tailored to identifying the best learning and education strategies for the autistic population. In addition to targeted learning strategies, respondents want more work and time invested in educational opportunities, not just in the United States, but worldwide, and not only with a vocational focus. One commenter specifically referenced the “dignity of suitable educational opportunities.”
3. Augmentative and alternative communication (AAC). I don’t have sufficient words to describe what a big deal the advent of assistive communication devices has been for the autistic community, particularly those who are non-speaking or who lose speech periodically. Parents who thought their children couldn’t read or write–because they couldn’t speak–learn otherwise when their child picks up an iPad or other interactive screen and starts communicating in words. As an example, here’s a video of Andrew, a 10-year-old boy with autism who’s nonverbal. Thanks to the iPad, in the video, Andrew is saying “Trick-or-treat” and “thank you” for the first time while doing what millions of children in the U.S. do every Halloween without a second thought. As one of the several respondents who mentioned AAC said, “Anything on AAC, because that is so vital to so many people and we need it to be refined, made cheaper, and distributed more widely.”
4. Social attitudes and how they influence self esteem and anxiety. These factors affect all aspects of an autistic person’s existence from early childhood. Autistic people can hear, read, and understand what others express about them. Negative attitudes and commentary about autism in every sphere they encounter, sometimes within their families, in the health care environment, in the news media, and at school can grind down self esteem and jack up anxiety. Of course, that’s a completely typical human response to a constant message of “you’re different and less,” but my respondents would like to see researchers home in on how this barrage of negativity affects autistic people’s self perception and anxiety. One particularly galling aspect of health care for them, including therapeutic interventions, are practices based on assumptions about them that they know–but might not be able to articulate–are not true or that undermine an autistic person’s sense of self worth. If practitioners took the time to consult with autistic people for feedback or even as co-therapists, this situation might change.
5. Housing and employment. These items came up frequently, and for good reason. At least a third of autistic adults are unemployed, and that percentage might really be as high as 90% [PDF] unemployed or underemployed. This situation exists even though varied and useful skill setsoften go hand-in-hand with being autistic. I’d suggest that researchers might consider employing autistic people as consultants to gain greater insight about every step of the process. Right now, as one respondent noted, research oriented toward helping autistic people with “the challenges of living in an alien world” seems to be sorely lacking. A patchwork of government programs for housing isn’t enough and doesn’t support the gaps some autistic people might have when living on their own.
Obviously, all of these areas overlap and interact. Sensory overload can get in the way of communication. Either can interfere with social function in some work environments, and the attitudes of the people in work and education environments can do much to an autistic person’s anxiety and self esteem, as can unsuitable or poor housing or jobs. All of these factors will feed back on sensory and communication functions.
What you won’t see on this list are desires for cure or prevention or identifying a cause, areas where most autism research focuses. Although some members of the autistic community who did not respond in this (unscientific) survey have expressed a desire for cure, the concepts of cure and prevention bother many autistic people. For these autistics, targeting cure and prevention implies that they need to be prevented or cured, rather than appreciated and acknowledged for what they have to contribute, speaking or not, as part of the neurological diversity of the human species.
Many thanks to some respondents who agreed to my naming them here, including Emily Paige Ballou, Lynne Soraya, Paula C. Durbin-Westby, Michael Wilcox, and Zoe Gross. My respondents represent a broad range of the autism spectrum and of backgrounds and experiences.