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-marix 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.]

4.02.2017

On World Autism Acceptance Day: How to Find Good Writing By Parents

Sitting on Rocks Is a Legit Thing. 
[image: Leo, a white teen dude, sitting on a
serpentinite rock on a grassy hillside.]
It's World Autism Acceptance Day! A day to honor Leo and our friends as valued, loved, and respected members of our communities.

What are some best practices for observing WAAD? As I wrote as part of general guidelines, at TPGA yesterday,
"Since our first and foremost goal is to encourage critical thinking on autism matters, we do need to be careful about instantly condemning those who support autism awareness. Remember to ask yourself: are they honestly working for the betterment of autistic people, or are they demeaning autistic people by using them as piteous props? If it's the former, carry on; if it's the latter, avoid or speak out whenever you can."
Unfortunately, when it comes to WAAD writing from parents of autistic kids, too many take the demeaning route. I find this approach quixotic at best: If you write smack about your kids in public spaces, how could you ever expect other people to treat your children well? As I noted at The Establishment:
"Parenting approaches differ, but mostly, everything we consider “good parenting” fulfills two basic needs: It makes children feel safe, and it makes them feel loved. Parents and non-parents alike tend to scorn any parenting approach that doesn’t meet these goals. That is, unless the kids in question are autistic — in which case parents are too often encouraged to pursue approaches that traumatize and alienate their kids." 
Parents, if you don't want to traumatize and alienate your kids, I suggest you learn how to recognize harmful writing about autistic children, and avoid falling into the same pitfalls. Here four too-common examples of such bad writing, why using these approaches are not useful, and what you can do instead.

1) "I am furious that people celebrate autism acceptance. My child suffers from autism and needs a cure."

Considering autism a curable disease is misinformed thinking. High-support autistic people have always been part of society. That's a fact. Autism is brain wiring. Also a fact. Conclusion: Autistic people need understanding and accommodations, not cures.

Sadly, parents who talk about curing autism are generally the ones most hostile to the concept of understanding their autistic kids. Yet parents need to focus on understanding their autistic kids, and supporting them to live the best lives possible, if anyone involved is to thrive.

Of course, if a child is having a terribly hard time, that is indeed nothing to celebrate. The problem is, too many parents define autistic "suffering" as being ill, being non-speaking, or being violent—and leave it at that. By throwing up their hands instead of pursuing support, they compound any suffering their own kids may be experiencing, and, if they have any influence, spread that suffering to all the kids of the parents who listen to them.

Here's the autistic reality these parents are willfully ignoring: if a child has medical conditions, parents need to address those, while understanding that their child will be healthier and therefore happier—but still autistic—afterwards. They need to understand that everyone communicates, even if they don't speak, and pursue communication options. And there are usually completely reasonable but easily missed factors when autistic kids are aggressive or self-injurious, usually medical reasons. Look for those reasons!

2) "Autism is Hard. There is no reason to celebrate something so hard."

Yes, autism is hard. Hardest for the autistic person who is not being supported or accepted, however. It is very hard for autistic people to be part of a society that does not recognize how autistic anxiety, processing time, sensory issues, social difficulties etc., can interfere with a person's well-being and ability to cope, and harder still when that lack of understanding and acceptance happens at home.

Of course, society's lack of autism acceptance and understanding make it hard for parents and families too. Which is why, instead of complaining about autism, parents should be fighting for wider-spread acceptance, understanding, and supports for autistic people (and their families), so that everyone can win.

3) "My child functions like a much younger child. Waaaaah."

No, your child functions the way an autistic person with developmental disabilities functions, for their age. And they deserve their interests and life experiences to be treated with respect. Why does it matter so much if they choose to spend their time differently from their non-autistic peers?

If you want your child to be happy, then you need learn to yield to and accept their preferences; as long as they aren't harming anyone, they should be able like what they like, even if their interests aren't what you anticipated or hoped for, and even if they are technically for much younger children. Publicly ridiculing or second-guessing your child's passions and development is not only bad modeling, it is questionable parenting.

4) "My child is disabled, unlike those quirky fakers who write neurodiversity articles, work in Silicon Valley, and fight for autistic rights at the national policy level."

Autistic people are indeed a diverse bunch, and that heterogeneity has only been truly recognized for about two decades. It's unclear to me why this is a problem, because that ideally means more autistic people are being identified and getting supports. Plus the autistic people these accusations are usually leveled at, like the staff of the Autistic Self-Advocacy Network, include and work very hard for the rights of autistic people of all abilities. (Most autistic people also consider themselves disabled, whether they have White House appointments or not.)

Parents would do well to read the thoughts of autistic people themselves on the autistic experience, to understand why these "not like MY child" accusations are both often untrue, and hurtful. Autistic commonalities are as real as autistic diversity, and what sort of silly parent wouldn't recognize or appreciate having freely shared insights on autistic struggles and tendencies their own child might not be able to convey?

Also, the autistic kids and adults with the highest support needs are the ones most likely to get those supports, especially in school; while autistic people with fewer obvious support needs are more likely to be overlooked, dismissed, remain undiagnosed, and as a result have debilitating anxiety and depression. Who is being disadvantaged, again?

----

Other strategies for identifying harmful parent writing include noticing where such parents post, and invoking the power of Google. So, if you read parent Ashlyn Washington's recent rant against autism acceptance in the Huffington Post, you might think her stance was legit because she'd been given HP editorial go-ahead—but with a single Google search of her name, you will discover that not only does she believe autism is vaccine injury (not a legitimate stance), she was also posting in the Contributors section, where any Tom, Dick, or Jill can let loose, seeing as "Contributors control their own work and post freely to our site."

I'll end by imploring reasonable, supportive readers like you to call out harmful parent writing when you can, on social media or in the comments. I realize that calling out is confrontational and therefore squirm-inducing; I don't like doing it either. Especially when folks who get called out dismiss criticism outright, or angrily frame reasonable critiques as personal attacks.

But 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.

And with that, we're off to another hiking day, because hiking is something Leo likes to do. I can think of no better way to observe World Autism Acceptance Day. I hope you find happiness today, too.
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