When “Not Like My Child” Attempts Science

Jill Escher, head of the Autism Society of San Francisco Bay Area, appears to be an influential voice (or infamous in my estimation) for the autism community in California. Her blogs reach far beyond the San Francisco Bay Area. She is an autism epidemic proponent, which necessarily requires environmental causation determinism. This means that despite the overwhelming evidence that autism is both genetic and hereditary, environmental factors like vaccines and other toxic exposures like grandma smoking or herbicides or Escher’s pet theory around synthetic steroid hormone exposure, which mid-twentieth century was used to prevent miscarriage, become the autism cause par excellence just waiting to be discovered if money could be redirected into properly researching it.

To Escher, autistic adults and parents and researchers who stand by autism’s overwhelming genetic/hereditary origins are science deniers, leaving aside the fact that denying the existence of an “epidemic” does not require denying the possibility of environmental factors at play. On the other hand, Escher and the subset of parents she speaks for continually deny that there are actual autistic adults living among us most of whom remain undiagnosed because of the damage done starting with Leo Kanner’s identification in the 1940s of his “rare” childhood disorder. The “epidemic” theory of autism requires you to dismiss any notion that autism has always been with us, manifesting itself in a variety of forms with varying degrees of disability that could easily go unidentified when the proper tools to identify it had yet to emerge.

But the problem here is that Escher is more than just your average pathology paradigm “autism mom” with a blog. She’s a pathology paradigm “autism mom” in a position that lends her real credibility even if nearly exclusively among the autism community, which is separate from the autistic community, and being honest is the community that overwhelmingly sets the parameters of acceptable discourse around autism in this country. More than this, using phrases like “pathology paradigm” to accurately characterize her damaging ideas about autistic people won’t help because she firmly embraces it. She positively ridicules and dismisses the neurodiversity paradigm and movement. She describes Steve Silberman’s excellent book NeuroTribes as a mere phase that will pass, presumably once “experts” like her finally have the “smoking gun” study in hand that she’s just dying to beat us over the head with.

She believes that the DSM-5’s “lumping” together of Asperger’s Syndrome, PDD-NOS, and other previously separate diagnoses as all Autism Spectrum Disorder has created two separate autism worlds, those with brain damage (her kids) and those for whom autism is not a disability but instead confers a unique identity with intellectual “gifts.” What Escher wants is a hard line drawn between her non-verbal, intellectually disabled children, and those without intellectual disability. She wants the autism diagnosis reserved exclusively for her children and others like them–like my own son presumably. She pays occasional lip service to “high-functioning” autism only insofar as she must: in your formulaic run-of-the-mill “not like my child” blog post, “high-functioning” autism is usually mentioned with a qualifier, like “but,” which is then followed by a list of behaviors including feces on the floor or smeared on the wall (these parents love the feces smearing):

Yes, I will agree there are some on the mild end who can function fairly independently, but as a hallmark of their disorder often can’t hold a normal conversation, make normal eye contact, make friends, execute solid judgment, negotiate public transportation, fend off abuse, read subtle social cues, vary a routine, and/or hold a job. Even this form of so-called “high-functioning” autism is debilitating, with most individuals needing at least some form of lifelong supervision and support. But for the most part, people with autism are even more incapacitated, such as my friend’s 12 year-old son who regularly attacks his parents and siblings and typically spends his days flicking pieces of string in front of his face. Or my friend’s 18 year-old son who can have a brief conversation but is now 6’ 4” and easily slips into rages involving things like hurling televisions across a room. My friend’s autistic daughter, 17, has some words but cannot attend to her own menstrual periods or personal hygiene, and defecates on her floor.

Escher and the parents she speaks for want changes to the diagnostic criteria to separate their “catastrophically” damaged kids from everyone else.

Autism has degenerated into a philosophy and personality identification rather than as a serious mental pathology. When just about anyone with a quirky or acerbic personality can be placed in the same simplistic diagnostic category as my catastrophically disabled nonverbal children, we have a scientific, moral, and practical problem.

Because of the shortcomings of the DSM, Escher has evidently taken it upon herself to fix it with a more “realistic” model that for her and the subset of non-autistic parents she speaks for addresses their curious list of “grievous consequences.” This more “realistic” approach took the form of a so-called Autism Matrix that appears to be a visual reworking of the already shallow linear understanding these “autism parents” have peddled about the spectrum model for years.

According to the San Francisco Autism Society’s blog, this is part of a Rethinking Autism series published for Autism Awareness Month. Very few autistic people likely gave Escher any mandate for rethinking anything. But she has an answer for that too: she doesn’t need one! Because her primary concern here is “real” autistic people like her children, “catastrophically” disabled, and few autistic people need be consulted outside of perhaps a handful with, as she describes, “sufficient cognitive and functional capacity.” 

autismmatrix

The Autism Matrix: a visual way to express #notlikemychild. (Note: pictures of actual people blurred out to protect privacy since this wasn’t initially of any concern to Escher.)

Pseudoscience is easy to come by within Escher’s community, but I admit to being particularly astounded by her arrogance in piece after piece she publishes, and especially her “matrix” because it appears as though considerable effort was put into it. It is still difficult for me to grasp the entitlement that Jill Escher evidently believes she has in talking about autistic people this way. But what is she actually saying? At its simplest: we have a typical “not like my child” parent blog post. It is taking everything wrong with “functioning” labels to their logical conclusion by turning them into a pet theory that will be taken seriously by non-autistic people nearly exclusively. It suggests that what autistic people need more than anything else is non-autistic parents​ creating elaborate Intro to Psychology high school projects that a run-of-the-mill “not like my child” blog post could have effortlessly conveyed instead.

The design is based on reports and input from parents, caregivers, and clinicians, as well as people with ASDs who have sufficient cognitive and functional capacity to provide comment.

It must be legit since “people with ASDs” capable of displaying “sufficient cognitive and functional capacity” made some comments. Just curious Jill, what counts in your mind as “sufficient cognitive and functional capacity”? Let’s go to the matrix: one of your “A” class autistics in the top left corner, the ones right on the line between the “Normal Zone” and the “Autism Zone.” In other words: the ones like me, definitely not like your children. Yes, she actually invented a “Normal Zone.” Maybe even worse is the “Confusion Zone” which I won’t even elaborate on. Were I to make this nonsense up it would be for satirical purposes only. Escher could have saved us the trouble with a simple “not like my child” blog post because we’ve seen this all before.

She says that “the tendency to lump ASD under one label has had grievous consequences for progress in epidemiology, interventions, advocacy, policy-making, and service design, among other areas [emphasis added].”

Grievous consequences? Epidemiology? Interventions? Exactly what are these grievous consequences? Don’t get me wrong, I see “grievous consequences” too, not least of all from people like Escher, and not necessarily from flaws in the diagnostic criteria either. No autistic people that I have ever read argue that autistic people with intellectual disabilities be separated from those that do not, because this kind of segregation serves only those like Escher who believe autism to be reducible to external behaviors and IQ scores, that autism is a sliding scale of brain damage, that there is such a thing as a “normal” way of being and a wrong one, and only a handful of these catastrophic “mental pathology” cases deserve whatever service and independent living scraps our society is capable of delivering right now.  Autistic adults see this as epidemic fear mongering attempting to assert its influence on the existing diagnostic model, which is undoubtedly imperfect, but should in no way bow to bigoted “citizen scientists” who see autism as either brain damage or service grabbing quirky fakers. If you are not capable of accepting all of us then you do not belong in a position that allows you to speak on our behalf. 

But those “grievous consequences” Escher talks about are not the same as the ones I see. No matter if our disability is assumed to be “mild” or “catastrophic,” which for Escher and her parents is a scary sounding substitute for “real autism,” all autistic children face “grievous consequences” from anti-vaccine and other environmental causation cultists who usually peddle fraudulent bio-med “cures” and “treatments,” and from parents who “love” their child but “hate her autism,” a love so strong that no forced toxic ingestion is too extreme in the service of winning back the “normal” child you were expecting to have. And then there is widespread conversion therapy (ABA) that “recovers” children from autism small fortunes from families’ bank accounts. And then there is the widespread murder and/or abuse of autistic children by caregivers, and endless “awareness” campaigns and “cure” walks that autistic people never asked for, and a veritable circus of parent “experts” who dismiss autistic adults because our existence throws a wrench into “epidemic” fear mongering. Undoubtedly, I will similarly be dismissed by Jill Escher and the parents she speaks for owing to what she has decided is my “sufficient cognitive and functional capacity” which allows me to maintain a blog. But I’m not kidding myself as I know she is unlikely to read anything I have to say anyway.

Escher is an expert in the pathology paradigm par excellence. She scarcely makes an effort to hide this because she has no need to. Her choice of what only the pathology paradigm could ever decide is a list of “grievous consequences” betrays her motives. But really, her motives are not considered controversial because the pathology paradigm is omnipresent within the dominant cure and treatment culture of the autism community. Escher is another “autism mom” who happened to land in a position of moderate influence in a large US city with an autism organization that lends her unwarranted credibility. And she has an internet connection. Pseudoscience requires WiFi first and foremost.

But she will be taken seriously nevertheless, at least among the subset of parents she speaks for. Because in the alternate reality of the autism community, just about anyone can invent whatever theory or treatment they wish, no matter how absurd or harmful, and still have it taken more seriously than the words of an actually autistic person. I get it Jill, those of us with “sufficient cognitive and functional capacity” are not like your children. But a simple “not like my child” blog post would have won you equal praise from the parents you speak for. Next time, instead of zones and tiers and numbers and letters, just follow the standard “awareness” formula: write some paragraphs about how your child destroyed a pillow or smeared feces on the wall and copy and paste words and phrases like “symptoms,” “high-functioning,” “low-functioning,” “severe,” “deficits,” “treatment,” “inappropriate [choose one: play or behavior],” “suffering,” “disease,” “brain injury,” and you can even include “epidemiology” and “etiology” just to make you sound more science-ish. But all in all, let me be clear in the unlikely event you do actually read this: you do not speak for me and you do not speak for my autistic son either.  

 

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One thought on “When “Not Like My Child” Attempts Science

  1. Pingback: Against Aspies: A Defense of Neurotypicals | Age of Neurodiversity

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