In his extremely valuable article from last year entitled Autistic cult of redemptionwriter John Summers tells how he was recruited into the world of autism pseudoscience after his then-teen-year-old son Misha was diagnosed, and how he got out of it.
Reading this article highlighted to me how hard it is to climb the tightrope we often ask parents of autistic children to navigate as they navigate competing sets of information – especially regarding autism and disabilityand in tensions between parent and self-advocacy communities.
Because at least there were anti-vaccination and alternative medicine movements is wrong about autism in a particularly perilous wayAsking parents not to be fooled by misinformation about autism is complicated by the fact that Conventional medical science and psychology have also often been wrong about autism. And even though they already were differently wrong than homeopathy or the anti-vaccine movement, have often done the same in horribly dehumanizing and harmful ways. Partly because even some of the most recognized and reputable specialists and researchers have felt incredibly comfortable over the years using autism and autistic people as a projection screen for pet theories, or making statements based solely on popular prejudice, speculation, or personal agenda. magnification.
But many others were simply wrong. In most cases, bona fide doctors just do it they didn’t understand what they were seeing in terms of autistic ways of communicating, expressing, growing and developingor they didn’t know how to question what they were taught.
From refrigerator mothers to extreme male brain theory, “theory of mind” and damaged mirror neurons, to Applied Behavioral Analysis (ABA) therapy, the world of conventional medicine he was often as wrong about autism as the common charlatans.
Please remember that Andrew Wakefield’s disastrous 1998 study was published in the prestigious mainstream medical journal The Lancet and was left for 12 years before being withdrawn.
This mainstream research and therapeutic practice, at least in some cases, continues to support “recovery” from autism.
For decades, the dominant thinking about autism was that an extremely restricted institutionalized life or segregated education and employment in sheltered workshops was all that could really be expected of us.
(The phrase “you know your child best” in the medical community against such dehumanization and objectification was originally an vital and humanizing revolt by parents who felt that their autistic and disabled children deserved better. This is the same phrase that I I exploit it now. I often get used to it reassure parents to reject the prospect of an autistic adult or not looking beyond their own preconceptions about their child’s range of understanding and capabilities).
And autistic self-advocates often ask parents to believe something completely different from what mainstream experts sayincluding renowned doctors, therapists and educators, to the point that the way the DSM defines autism in general is deeply flawed and that what is widely known as the “gold standard” of autism therapy is, at best, largely ineffective AND at worst, deeply harmful. This extremely common, common knowledge is completely wrong.
That autistic people in loose private networks of listservs, closed Facebook groups, webrings, and Tumblr blogs have over the years autism has become much more normal than established medical science. Not always, of course, but some of the stuff you’ll find on personal blogs about sensory experiences, inertia, stimulation, the importance of echolalia, autistic obsessions, autism as an inherent part of who we are, not something you think can drive away or simply force us to mask or suppress it forever without consequence, predated research on the subject by years. That for a long time, what you could read on someone’s LiveJournal was likely to be more useful and true than what you might hear in a medical school lecture on the subject or read in a scientific journal.
But part of the reason that for so long we have had to create our own networks of support and information, regardless of the hostility of mainstream medical science, is that we started talking about things completely different from the professionals of this world. When I first read autism writings by autistic people, it was striking to me how far they strayed from the conventional understanding of autism at the time in characterizing our experiences. The descriptions of it from the outside in and from the inside out were almost mutually incomprehensible. (In fact, I remember reading a description of autism at one point in the overdue 1990s or early 2000s in a textbook or magazine and thinking, “Whatever is wrong with me, it’s the opposite.”)
There they are things that the autism community knows much more aboutand things for which we have invented all our own terminology than mainstream medicine has ever considered taking seriously.
And that’s part of what I think about as a parent in this Care and Feeding column comes across (searches for information on how to support her perhaps twice-exceptional son in private social media groups).
Because while some of the concepts he comes across deserve the utmost skepticism in my opinion, for example auditory processing disorder is something that I feel, not only from my own experience but from discussions with many other autistic people over many years, is worth taking incredibly seriously. To understand what she is describing and how it affects people, even if it turns out to be not something her own child struggles with.
There is also a lot of rhetoric online from some of the neurodiversity community that I find simplistic and unsupported, and some that is simply not true. There is a lot of worthwhile speculation that is presented as established fact when it is not. There are some really questionable ideas that are gaining traction in ways that concern me.
But a lot has also happened thoughtful speculation that has led to well-designed studies to support these ideas and evidence to support what autistic people have long reported.
Therefore, when seeking first-hand information about autism and other disabilities, parents should be aware that they will encounter terminology that they are not familiar with and that may not be heard by professionals. You’ll see the issues discussed in a way you won’t from conventional sources. And the fact that you may not find confirmation from established sources does not necessarily mean that these ideas are worthless… but perhaps they require further study and research.
So, while it is absolutely necessary to be critical of what you read on the Internet, I believe it is equally vital to remain curious and humble when you encounter first-hand accounts of experiences very different from your own, especially involving groups of people who have been commonly misunderstood, rejected and mistreated by mainstream professionals.
At the same time, these people are not necessarily resistant to oversimplification, creating echo chambers or succumbing to pseudoscience or wishful thinking.
And I think it’s worth acknowledging what a hard needle we’re asking fit and able-bodied parents to weigh in on how they evaluate information and remain vigilant against quackery – and that neither following the science nor believing everything autistic people say on the internet, we should expect them to do so uncritically, but developing discernment and good judgment about who you listen to and why takes time and is worth the effort.