In his incredibly worthwhile article from last year, Autism’s Cult of Redemption, writer John Summers recounts how he was recruited into the world of autism pseudoscience after his then-toddler son Misha’s diagnosis, and how he got out.
What was underscored to me in reading the article is just how difficult a tightrope we are often asking parents of autistic children to walk, as they navigate competing sets of information—especially regarding autism and disability, and in tensions between parent and self-advocate communities.
Because while the anti-vaccine and alternative medicine movements have obviously been wrong about autism in some especially dangerous ways, asking parents not to fall for misinformation about autism is complicated by the fact that conventional medical science and psychology have also, frequently, been so wrong about autism. And while they’ve been differently wrong than homeopathy or the antivaccine movement, they have often also been so in horribly dehumanizing and damaging ways. In part because even some of the most credentialed and reputable professionals and researchers over the years have felt incredibly free to use autism and autistic people as a projection screen for pet theories or make pronouncements based on little other than popular prejudice, speculation, or for personal aggrandizement.
But many others have simply been wrong. For the most part, clinicians operating in good faith have simply not understood what they were seeing when it came to autistic modes of communication, expression, growth and development, or not known how to question what they’d been taught.
From refrigerator mothers to extreme male brain theory to “theory of mind” and broken mirror neurons to Applied Behavioral Analysis (ABA) therapy, the world of conventional medicine has frequently been as wrong about autism as the outright quacks.
Remember that Andrew Wakefield’s catastrophic 1998 study was published in the Lancet, a prestigious mainstream medical journal, and allowed to stand for 12 years before its retraction.
That mainstream research and therapy practice is still pushing “recovery” from autism in at least some cases.
That predominant thinking about autism for decades was that extremely constrained lives of institutionalization or segregated education and employment in sheltered workshops was all that could really be hoped for us.
(It was against dehumanization and objectification like this—from within the medical establishment—that “you know your child best” was originally an important and humanizing revolt by parents who thought their autistic and disabled kids deserved better. The same phrase is one I now often see being used to reassure parents about dismissing autistic adult perspectives or not looking beyond their own preconceptions of what the extent of their child’s understanding or capacity might be.)
And autistic self-advocates are also often asking parents to believe something quite different from what they’re being told by more mainstream experts, including reputable doctors, therapists, and educators, up to and including that the way the DSM even defines autism is deeply faulted, and that what’s widely known as the “gold standard” therapy for autism is largely ineffective at best and profoundly harmful at worst. That incredibly widespread, common knowledge is flat-out wrong.
That autistic people in loose networks of private Listservs, closed Facebook groups, webrings, and Tumblr blogs have gotten autism vastly more right over the years than established medical science. Not invariably, obviously, but that some of the things you could find being said on personal blogs about sensory experiences, inertia, stimming, the meaningfulness of echolalia, of autistic obsessions, of autism being an inherent part of who we are and not something you can drive out or just force us to mask or suppress forever without consequences, were years ahead of the research on these subjects. That for a long time, what you might read on somebody’s LiveJournal stood a good chance of being more useful and accurate than what you would hear in a medical school lecture on the topic or read in a scientific journal.
But part of the result of the fact that we’ve had to form our own support and information networks apart from the hostility of mainstream medical science for so long, is that we have come to talk about things very differently from the professionals in that world. When I was first reading autistic writing by autistic people, it was glaring how at odds with conventional understandings of autism at the time the characterizations of our experiences were. The descriptions of it from the outside in, vs. the inside out, were almost mutually unintelligible. (In fact, I remember at one point reading a description of autism in the late 90’s or early 2000’s, in either a textbook or magazine, and actually thinking “Whatever is wrong with me, it’s whatever is the opposite of that.”)
There are things the autistic community knows a great deal more about, and things we’ve come up with all our own terminology for, than mainstream medicine has ever even considered taking seriously.
And this is part of what I think the parent in this Care and Feeding column is running into (as she seeks out information about supporting her possibly twice-exceptional son in private social media groups).
Because while some of the concepts she mentions encountering are ones I agree deserve the utmost skepticism, auditory processing disorder, just for instance, is something I believe, not only from personal experience but discussion with many other autistic people over many years, is worth taking incredibly seriously. Of understanding what it describes and how it affects people, even if it turns out not to be something her own child struggles with.
There is also a lot of rhetoric coming from some of the neurodiversity community online that I find simplistic and unsupported, and some that simply isn’t true. There is a fair amount of worthwhile speculation that’s being presented as established fact when it is not. There are some really dubious ideas I see gaining traction in ways that alarm me.
But there has also been a great deal of thoughtful speculation that has led to well-designed research validating those ideas and evidence that backs up what autistic people have long been reporting.
And so something parents also need to be aware of, as you go seeking out firsthand information about autism and other disabilities, is that you are going to encounter terminology you’re not familiar with and that you might not hear professionals using. You’re going to see things discussed in a way you won’t from conventional sources. And the fact that you might not find corroboration from established sources doesn’t necessarily mean those ideas are without merit…but possibly that they need more exploration and study.
So while it is absolutely necessary to be critical about what you’re reading online, I think it’s equally crucial to remain curious and humble when encountering firsthand accounts of experiences very different from your own, especially about groups of people who have been widely misunderstood, dismissed, and mistreated by mainstream professionals.
At the same time, those people are not necessarily immune to oversimplification, creation of echo chambers, or falling for pseudoscience or wishful thinking themselves.
And I think it is worth acknowledging what a very difficult needle we’re asking non-autistic and non-disabled parents to thread in how they assess information and stay vigilant of quackery—and that neither following the science, nor believing anything and everything autistic people say online, is something we should demand that they do uncritically, but that developing discernment and good judgment about who you’re listening to and why is something that takes time, and is worth the effort.
