4.24.2017

Truly Awful Pseudoscience: Jill Escher's "The Autism Matrix"

San Francisco Autism Society president Jill Escher recently used that society's website to publish "The Autism Matrix," her opinion piece about what she considers "the autismS." Its most prominent feature is a matrix of photos of autistic people Escher has categorized: Not by any legitimate means, but instead by what she assumes their abilities to be. Reader, please know: this is not only horrifying, but also not how valid autism information works.

Since an unsuspecting Reader may also assume that being published on an official autism organization site lends Escher's "analysis" legitimacy, let me tell you why The Autism Matrix is in fact a steaming pile of hostility, hubris, pseudoscience, and ignorance.

Short Version of Why "The Autism Matrix" is Bunk
  1. Once Escher took over as President of the San Francisco Autism Society of America—an organization that, under her guidance, does not bother including or working with autistic people themselves—she began to publish whatever she pleased on the org's blog. But her writings are not representative of the Autism Society's or even her branch's outlook, as per the disclaimer the national branch insisted Escher put on the blog after they began receiving complaints about her negative and misleading postings. Her "Matrix" is just a personal blog post, like the one you are currently reading.
  2. The matrix is not even a matrix. It is a line plotted from the upper left corner of a grid to its lower right, illustrating Escher's incorrect assumption that autistic people with high IQs are always less disabled than people with low IQs. In reality, the combination of each autistic person's ability to demonstrate their intellectual capacity, paired with their support level, is complex and varied, and can fluctuate in an individual not only by age, but by environment and stress level.
  3. The Matrix's x-axis measures "social/adaptive functioning." Social and adaptive skills are two entirely different ability sets, and conflating them demonstrates how little Escher understands about autism and autistic diversity. 
  4. The y-axis cites "measurable IQ," as a yardstick for intellectual ability. However, people who understand autism also understand that researchers consider IQ a suspect means of evaluating autistic intellectual ability
  5. The Matrix features pictures of several autistic people, plotted on the graph as to where Escher assumes they belong. Was Escher given permission to feature every last photo, plus access to all of the featured individual's evaluations? This is, at the very least, ethically-challenged speculation, and a mockery of most autism studies—which tend to legally insure the anonymity of their subjects.
  6. The Matrix's purpose is to separate her high-support, non-speaking kids, and autistic people like them (e.g., my own son), into entirely different categories from lower-support autistic people. This is cruel, ignorant, and unnecessary. Every diagnosed autistic person by definition has a disability, and deserves whatever supports they need. Autistic diversity is a fact, not a cage match, while autism is diagnosed based on commonalities, not differences.
  7. Escher is not an autism expert by training or professional experience. She is, like me, a parent. Attempting to pass her personal opinions off as valid by using sciencey stuff like charts and graphs is exactly the kind of pseudoscience approach used, with similar zealous sincerity, by anti-vaccination parents of autistic children.
Long Version of Why "The Autism Matrix" Is Baloney 

Example of a child of a hubristic parent
Source: Wikimedia Commons
[image: illustration of Icarus, a character from
Greek mythology, falling from the sky.]
After the way the 2016 US Presidential election worked out, I've become even more wary of people who inflame the resentments of those who feel ignored, with the goal of duping them into supporting approaches that are not in their, or their families', best interests.

I do not believe Jill Escher is working in autistic people's best interests when she publishes hooey like the Matrix. The problem is, some of the work she does at SFASA is cool and useful, and the board of the SFASA is full of great people (though, again, not any autistic people). And people tend to use those plusses to proclaim Escher as incapable of causing harm, as if humans are not by nature complex and contradictory beings. So please view this as a critique of Jill Escher's specific harmful actions.

When Escher, who is not an autism expert by any measure except her own, has the hubris to publish assumption-riddled nonsense like her Autism Matrix as a legitimate autism diagnostic supplement, she is doing a disservice to people who don't know any better—or who buy into her misinformed narrative about evil "high functioning" autistic people waging war on poor defenseless high-support children, and their families. And if you think I’m exaggerating the hate/divisiveness element, witness this Autism Matrix comment from Laurie Romanowich, which was approved by the SFASA blog moderator:
"Brilliant, Jill. This kind of clarity is desparately [sic] needed and long overdue.
"You have functionally addressed to some degree my long held concern, which I have previously discussed from a legal perspective, of the need to distinguish between autism that constitutes a disability within the meaning of the ADA statute (what I have called "ADA" autism) and autism that does not. I do not understand why those who do NOT have legally disabling autism within the meaning of the ADA statute have the loudest voice in this debate, let alone set disastrous policy for those who do."
Reading this comment is like watching someone retweet Trump on autism and vaccines: It is parroting conspiracy theories, not reality. Anyone who has an autism diagnosis also has a disability, and is therefore legally disabled according to even the most casual meaning of the ADA statute—the ADA being, of course, the Americans With Disabilities act. This is yet another bitter, misinformed variation on claiming autistic adults are "quirky fakers" who are "not like MY child."

Also: Autistic-self advocates who do policy work do so as experienced experts, in tandem with other disability organizations, on behalf of the greater good, often drawing on decades of policy history affecting people of all abilities—and to assert the rights of their own community. It is parents like Escher who come barreling in from the sidelines, with shallow understandings of policy precedents, and in ignorance of widest implications for people of different ability levels, who decide that when the current policies don't suit their personal outlook for their own children, they need to reinvent those policies.

But policy-making cannot succeed as a personalistic effort, as Trump is learning the hard way, and as Escher needs to recognize. Policy is about compromise, collaboration, and (ideally) to benefit the people policy makers don't hear from, as well as those they do. That means policy work is complicated, long-term, slogging that needs to address best practices for everyone as well as it can, even when it may not be perfect for advocates' personal scenarios. Much like the way I support the Affordable Care Act as policy, even though it has made getting insurance for my college student daughter who lives out-of-state very difficult.

Also, autistic self-advocates are not some sort of monolithic, parent-loathing bloc. Making that assumption is as absurd as lumping me in with Escher because we are both short white mothers of high-support, mostly non-speaking teenage autistic boys who go to the same school, we both have advanced degrees, we both live in Silicon Valley, we both do autism-related work, and we both lead lives of relative privilege. Even if you encountered two autistic self-advocates who shared as many traits as Escher and I do, there is no reason their advocacy approaches would be anything alike.

Escher's enabling and permitting such mass-dismissal of autistic self-advocates is not only silly, it is mean. Creating a graphic that segregates assumed low-support individuals like Temple Grandin from high-support individuals like her children—despite a brief grudging comment about low-support autistic people suffering too—is yet another of her continuous attempts to frame those low-support individuals as lacking any support needs at all. In reality far too many of those adults flail their entire lives due to such second-guessing, a staggering percentage of them end up in poverty, and few of them have functional safety nets. To be adult and autistic, whatever your measurable IQ—without the proper supports and services—is too often a life of pain, as well as one with an elevated risk of suicide. Scoffing at those autistic realities is despicable.

One of the most callous parts of the Autism Matrix post is Escher's inclusion and segregation of a "chatty young woman who has trouble keeping a job," after Escher spoke with the young autistic woman at a hockey game. As autistic writer Amanda Forest Vivian commented,
"Just the idea of this woman she's referencing, though, who sounds like she was openly and honestly talking with Jill about her struggles in life ... the idea of having been that open and friendly to someone like THAT, and having your personal experiences used against people like you, just makes me feel awful." 
As for the Matrix, itself, again: not a matrix. It is a line, from what she sees as "less disabled like I assume John Elder Robison to be" to "truly disabled like my kids." But people who actually attempt to understand or have empathy for autistic people who are not like their own children also understand that autistic people do exist in innumerable and ever-changing intersections of intellectual ability and adaptive skills. Escher just isn’t aware of and doesn’t recognize the autistic experiences that don’t fit her "us vs. them" narrative, dismissing those outside her non-matrix line as due to other co-morbid mental or physical conditions, the same way she dismisses “typers” like Tito Mukhopadhyay, and as if she were some sort of self-appointed autism cryptozoology-debunker. This is breathtaking rudeness and ignorance.

And then there's her problematic presumptions about the abilities of the people in the Matrix. I suspect many of the people she included would not be pleased about being featured, and may take issue with her assumptions about them, given (again) how autistic ability can change both temporally and situationally. And if her criteria is based on publicly available information, then I would be within my rights to create a new version of the Matrix and put her on it, based on her own public comments in autism science forums. I doubt she'd be pleased.

I don't really expect Escher to stop spewing agenda-based pseudoscience based on my critique; in my experience, she tends to frame any criticism as a personal attack. Of course, that is entirely missing the point: The problem is her actions. And I want people to understand why her actions are so reprehensible. As I wrote recently about the need to actively counter posts like The Autism Matrix:
"The reason for calling out is not necessarily to get that person to change their behavior (though that would be great); it is to make them accountable for the hurtful things they publicly endorse, and let their readers know that writing awful, misleading, privacy-violating things about autistic children in public is not acceptable.
If you have seen Escher's autism matrix post shared in any public or private groups, I urge you to share this post as well. What our community needs more of is useful information, not Escher's needlessly polarizing pseudoscience. While autism is about similarities, every autistic person is indeed different from every other autistic person. But that means they deserve tailored supports and accommodations, not being stuck in inaccurate boxes that will actually limit their access to those supports.

[April 25, 2017 7:40 AM: This post has been updated with a few clarifications and expansions.]

14 comments:

  1. I appreciate you writing about this. I don' get how people like Escher can be so negative and hateful.

    ReplyDelete
    Replies
    1. Getting praised for airing and promoting one's prejudiced views is, unfortunately, a self-perpetuating thing.

      Delete
  2. "Nothing about us without us" is a credo I live by. How do you support the autism population without their voices? Escher would see my high IQ autistic daughter in college studying biology and genetics in one way - she'd never see her the way I do, full of anxiety, after her meds have worn off, not knowing where to turn, totally socially isolated. Thank you for this thoughtful and powerful expression of the need for true inclusion and for science, not prejudice.

    ReplyDelete
    Replies
    1. The mind reels, indeed. All the best to your daughter, and to you.

      Delete
    2. Thank you for this. I am one of those she would claim has no needs for support as I have a PhD, am a professor, and now at 49 just bought a house. But I struggle constantly, am alienated at work, have days I cannot leave the house, have serious health issues from years of inability to do even basic self care, and even as a professor, there are days I can barely get words out. Sometimes I have to call in sick because my ability to speak has locked up. I DO need the ADA because I am still bullied even at 49. And my children, both autistic, would also not fit into here schema very well. It is so wildly off base. And I want to share that i know people who are on what she would consider the low IQ low functioning level and yet I see as more peers to me then my fellow academics. They react to the world as I do, I see myself reflected in them when I spend time with them in ways I have never seen myself reflected in my supposed peers. My IQ gives me advantages and my job gives me advantages that allow me to work around my disability, but if I did not have the ADA working for me, I would be dead now because my body can not maintain a typical schedule of life. I'm tired of people underestimating my shared history with my fellow autistic people and I'm tired of people underestimating how much life is a struggle for me even if I'm verbal most of the time. I see multiple therapists still to keep managing all the overwhelm from sensory, anxiety, social demands, etc. I'm tired of people trying to separate me from my tribe, it took me so long to find them and to see my way of being in the world reflected in others and constantly people want to tell me that these people are not like me when to me they feel like home. Why can't parents like this woman understand that? Don't they want their children to have that feeling of belonging too? It is a basic human need and one I never had until I found fellow autistic people. Well I'm just ranting and near an overwhelm moment here, so I'm going to let this go for today.

      Delete
    3. Thank you for posting that, Elizabeth. Reading your words gives me hope for my son.

      Delete
    4. I'm so glad to hear from you, Elizabeth; thank you. And I couldn't agree more -- I want my son and all his peers, as well as their adult autistic community members like yourself, to have that feeling of belonging. No one deserves any less.

      Delete
  3. This comment has been removed by the author.

    ReplyDelete
  4. When I first saw the term "matrix" I thought "hmm, that might be a thing". I have two sons, and a husband, and all four of us are Autistic - my eldest and I seem to share a "type", whereas my husband and other son are individually different in their Autism. At this stage, I believe my eldest and I simply have similar personalities (for instance, we both share severe anxiety), and there is no "type" when it comes to Autism, in actual fact (despite my terminology when discussing my own situation); however I was interested in reading about this matrix regardless.

    And what a heap of shit it is indeed lol!!! I love your post, concur with it all, and thank you very much for writing it (and for the bullet points, which were helpful!).

    ReplyDelete
    Replies
    1. Wait what autistic people have personalities? /sarcasm.

      Delete
  5. so uhhh
    I'm not even disabled
    but the little box in the top right of Ms. Escher's not-a-matrix "matrix" labeled "Normal Zone" has killed all credibility she might have had as a disability rights advocate

    ReplyDelete
    Replies
    1. No kidding. There is so much wrong with this post I couldn't keep track of it all. Thanks for highlighting yet another WTF.

      Delete
  6. I am considered "high functioning" by "experts". My sensory impairments are usually minimized or completely disregarded, as I should be able to overcome them by using my intelligence.

    ReplyDelete
    Replies
    1. And that is messed up and wrong. I am sorry. If you need any resources to back up your rights, let me know.

      Delete

Respectful disagreement encouraged.

Related Posts with Thumbnails