To Siri, With So Much Disappointment

To Siri With Love author Judith Newman and her son Gus
[image: A white woman with long curly dark hair, snuggling with her teen
son, who has short dark hair, next to an image of the book To Siri With Love.]

It took me a long time to read Judith Newman's autism parenting memoir To Siri With Love, despite the author herself courteously sending me a copy. I had to nudge myself to keep going, because I don't like reading books that treat autistic people as inscrutable annoyances. I also dragged my feet due to more personal preferences: books written in breezy airport-bookstore-ready voices are not my thing, plus Newman's sense of humor put me off: Getting a discount on a hotel room because a kid was recently eaten by an alligator onsite is not amusing to me, for instance.

Others, including autistic writer Max Sparrow, have written extensively about why To Siri With Love is flawed, and you should read what they have to say. Because I'm not alone in noticing that one of the primary problems with the book is that, when it talks about autism, it recycles outdated and stigmatizing cliches. Despite the two years since the award-winning neurodiversity explainer and history NeuroTribes was published, and despite Newman being a journalist, To Siri features common misconceptions, like insisting all autistic people lack theory of mind (long-established research clarifies that the issue is actually one of “double empathy,” in which negative assumptions from non-autistic people about autistic people are most of the problem).

I am also put off by how little respect Newman's shows for autistic people. She writes passionately about how much a specific autistic adult needs support and understanding and (correctly) how badly society and systems have mistreated him—yet reveals second-hand information about his bowel habit demonstrations of distress. This actual lack of theory of mind is even more confusing given that Newman wrote Siri in part to bring more attention to non-genius autistic kids like her son Gus (who seems like the most awesome young man ever), a group she considers underrepresented. But, as as comedian and filmmaker Hari Kondabolu says in talking about minority representation in general: it can’t just be about the stereotypes; it has to be about recognizing real-life diversity and humanity. Yet Newman does nothing to expand autism understanding, bust negative autism stereotypes, or further her son's humanity; if anything To Siri With Love mostly illustrates how much her son's autistic traits annoy her.

I think Newman has failed her son by writing this book. I think her book will make life harder, not easier, for autistic people including but not limited to both our sons. Because when it comes to the treatment of autistic people, the entire world is essentially bigoted bullies and complicit bystanders. Instead of defending her son, Newman has joined the side of the bullies in declaring, “Well yeah, I love him but I get your point and actually I agree that he’s weird.”

This deeply messed up attitude needs to be called out. While it’s common if not OK for parents to be ignorant and bigoted when they come from outside a community, once you find out your own kids are part of a margnialized community you are supposed to be like Amy Acker's mom in Marvel’s X-Men-adjacent series Gifted, and get 100% on your kid's side and do whatever is necessary to protect them. (I’m not recommending going on the lam, but allying with and learning from your kids’ community? Yes, that is actually a very good idea.)

And you certainly don’t join the world's bullies in smacking down all the other autistic people who come to your kid's aid because they are part of his community and get how much being bullied hurts. Instead, you ask your kid's people—who may not be exactly like your kid but surely understand what it is like to be constantly treated like subhumans yet survive—how they did it. You learn from them. Because you and those autistic people? That particular Venn diagram is all your kid has. It should be you, Autistics, and your kid against the fucking world.

This is why it is so infuriating and hurts so much to have a mainstream author like Newman choose the side of conventional shitty attitudes about autism and autistic people when her kid needs so much more from her. Yes, changing one's deeply ingrained negative assumptions about autism is hard. Yes, it's harder when society reinforces those assumptions. But if you’re the parent of a child from a minority group yet you yourself represent and have direct connections to high-profile media channels, and you not only shirk your power and waste the opportunity to change minds but then belittle and dismiss and sabotage your son's autistic community members for having opinions about your harmful book and the people it is hurting, including your own kid? You kind of suck.

People need to be aware that, despite Newman's insistence otherwise, autistic people generally don’t think they know autistic kids better than those kids' parents do. But autistic people assuredly do know what it’s like to be an autistic kid in a way non-autistic people never can. They have logical explanations for matters Newman considers autistic mysteries, like why autistic people have meltdowns over things that make no sense to outsiders, and why those meltdowns are not manipulative tantrums. They understand why Routine is Life. They understand that it's fully possible to have phenomenal skills in some areas while also having serious disabilities. They understand why training autistic kids like they're sea lions may result in some compliance and changed behavior, but it also results in kids being traumatized and not trusting their own right to say "no." They understand that when parents like Newman contradict autistic experience on these matters, and in doing so influence other parents to dismiss autistic insights, those parents' collective autistic children will suffer.

To Siri With Love also lacks informed empathy. If Newman had spent real time researching the history of reproductive rights for people with disabilities, she would have known that her blithely casual “maybe I will sterilize Gus, maybe I won’t” attitude reinforces the life-destroying notion that disabled people shouldn't have agency over their own bodies. Yes, she includes a few obligatory citations in related history. But her tone and sources omit the core histories of Black, disabled, and other marginalized communities, including why is it so inhumane to have had their reproductive rights forcibly stripped away. As Kerima Çevik writes, "Forced sterilization is part of a larger nightmare of systemic abuse of the black body we've survived but can't forget." Self-engaged and shallow approaches like Newman's, in my opinion, contribute to the ongoing atmosphere that allows the reproductive rights of people with disabilities to remain under attack.

People like Lydia Brown have already criticized how awful it is for Newman to muse about her son’s sex life, and equate it to a Benny Hill film, as though being autistic somehow turns sex farcical and fictional (she also once again disregards her son's privacy and dignity). I can't help but wonder: If she's so concerned about her son's sexuality, why she doesn’t include helpful information about sex ed for people with developmental disabilities, avoiding learned compliance, or the increased rates of sexual abuse of people with disabilities? Anyone who has ever read The World According to Garp is aware that that sexual abuse of people with disabilities is not limited to women.

Newman has heard most of these criticism before, and was not pleased by them. And here's my final disappointment: Instead of listening, she went on the attack against her son's autistic brethren and their allies. While of course we all want our friends to circle the wagons for us, there is no excuse for Newman and her defenders silencing marginalized disabled people, or making fun of how people who (by definition) have communication disabilities express themselves. I am horrified by her willful abuse of her privilege, just as I was horrified by some autistic people’s calls for Newman to die, or have her kids taken away.

Siri: Please delete the book "To Siri With Love" from my Kindle app. Thank you.

Why Won't The Autism Society Rein In Jill Escher's Bigotry?

I remain dismayed over how San Francisco Autism Society (SFASA) president Jill Escher comports herself in that role: She is openly contemptuous to many of the autistic people the Autism Society of America's (ASA) Guiding Princples direct her to serve, and misuses her leadership position at the SFASA to promote her personal opinions on, authorship, funding, and promotion of questionable autism science. And recently, she veered into outright bigotry at a talk at the International Meeting for Autism Research (IMFAR), which was then published on the SFASA site.

Though I contacted Autism Society of America president Scott Badesch about my concerns last year, nothing but platitudes resulted. As Escher shows no signs of tempering her harmful approaches—and in fact responds to criticism of her actions with claims of being bullied or censored—I am now asking other people (i.e., you) to let Mr. Badesch (sbadesch@autism-society.org) know that Ms. Escher's actions are not acceptable, and that they reflect badly upon the Autism Society as a national organization.

In your message, I encourage you to focus on three recent examples of Escher's questionable actions from the SFASA site:

1. Using racist and ableist graphics and phrasings 
2. Framing autistic people as burdens instead of human beings with legitimate needs
3. Claiming to be bullied by "neurodiversity advocates"

----

1. Using Racist and Ableist Graphics and Phrasings

Escher's recent pre-IMFAR UCSF conference talk, which was her standard apocalyptic shpiel based on carefully massaged data about an autistic tidal wave swamping the lifespan services system (which, yes, we don't have enough services, but how about demanding that autistic people deserve to have their needs met, instead) included the graphic below. She then posted the text of that talk on the SFASA site, using this graphic yet again:

[image: White slide with black text reading, "How do we get there?
Not by drinking more autism Kool-Aid",
an image of a red Kool-Aid Man holding up a pitcher of Kool-Aid
with red text reading, "Oh, yeaaaah" over his head,  and saying,
"Autism be just quirky peeps, and there's no true increase anyway."]

How could UCSF, IMFAR, and the SFASA all allow something so offensive, with such overtly bigoted themes, to slide? I guess for the same reason that people usually don't stand up when they encounter bigotry in polite or professional society: It makes them uncomfortable, and confronting people is hard, and maybe someone else will do it.

So, OK, I'll do it: Here is why this graphic needs to be removed immediately (some reasons excluded, for brevity):

"Autism be just quirky peeps." This phrasing is either making light of African-American Vernacular English phrasing, or of people with speech difficulties. Neither one is acceptable.

Coupling this phrase with Kool-Aid imagery—as associated with bigoted African American stereotypes as fried chicken and watermelons—is making matters worse two ways: implying that African American autism community members are less intelligent because they believe what mainstream scientists tell them about autism rates, and reinforcing why African American families too often feel unwelcome in the mostly white-dominated autism communities.

I do realize Escher probably never considered that she was committing several racist fouls, but that doesn't mean her actions aren't racist. Racism is like traffic law; violations don't require intent. And I am going to say this right now: If she gets defensive about being accused of racism instead of apologizing for her missteps—even if they were due to thoughtlessness—that tells us even more about her lack of suitability for an unchecked leadership role.

"...just quirky peeps." I've already written about how dangerously ignorant and ableist (again, bigoted) this position of Ms. Escher's is, but here's a refresher:

"...as Ms. Escher has described herself as a “science junkie,” she must be aware of the research indicating that autistic people have dramatically higher-than-non-autistic suicide rates. When an autism organization official who is supposed to be in service to the autistic population dismisses legitimately autistic people as merely “quirky” – when many of those autistic people’s lives never made sense until they received an autism diagnosis, and who don’t feel like they fit anywhere except in the autism communities – she is compounding the feelings of isolation, alienation, and depression that contribute to those elevated suicide rates."

Also, mainstream science has been very clear that the increase in autism prevalence is mostly due to better identification and changes in diagnostic criteria, as documented by Tara Haelle at Forbes:

"The idea that increases in autism rates reflects changes in diagnostic definitions rather than a real change in the developmental condition's prevalence is not new. Other recent studies have found similarly that real rates of autism have not changed significantly over the past couple of decades, and a 2013 study found that identified autistic children "clustered" where resources for diagnosis and treatment were greater. In other words, where there's more access to diagnostic services, the autism rate is higher."

Impatience with mainstream science is understandable; autism research is still not doing enough for autistic people and their families. But Ms. Escher's responsibility as SFASA president is to improve lives and resources, not to force-feed SFASA families her alternative autism facts. Besides, when it comes to people scoffing at mainstream science and then self-funding and promoting their own version of autism science reality, we need to be careful. Because you know who else used a combination of pay-to-play research and catastrophizing to strike terror into people's hearts about the autistic people who have always been here? Andrew Wakefield and his anti-vaxxer faithful. We don't need any more misdirections in autism science in general, and we certainly don't need it coming from one of the organizations that is supposed to be have our community's backs.

2. Framing Autistic People as Burdens

I consider it horrifying that Ms. Escher continues to contribute to social alienation and fear of autistic people like my son and her own, most recently by compare autism to a "huge, gaping wound." Even Autism Speaks has abandoned such hyperbolic approaches.

My own autistic son, like Escher's, currently requires 24/7 support, and may need that care for the rest of his life. But, even considering the uphill policy battle to ensure our sons have decent housing options as adults, those young men are more likely to get the care they deserve if others see them as human beings, rather than as society's burdens.

3. Claiming to Be Bullied by "Neurodiversity Advocates"

Last month, Ms. Escher published a widely-derided essay on an "Autism Matrix" theory at the SFASA blog and elsewhere. After outrage from several quarters (including this one) about how the Matrix theory was ableist, assumption-ridden pseudoscience that used photos of autistic people without their permission, the essay was removed entirely from The Jewish Weekly, and the graphic at the SFASA version was removed and replaced with a thumbnail. And then shortly after that, the original Matrix post gained a new introduction:

"Dear Bay Area Autism Community, 

"One of the most troubling and counterproductive developments in the autism field over the past several years has been a growing virulence online aimed at suppressing and denigrating perspectives inconsistent with a particular neurodiversity view of autism. 

"The use of intimidation in lieu of mature and respectful discourse on critically important topics both polarizes and degrades our multi-faceted autism community. A culture of attack hurts autistic people as well as the many organizations striving to support them. 

"SFASA condemns bullying, and instead stands firm in defense of public discourse that explores and reveals the great many realities within the diverse universe we call autism. 

"Very truly yours, 

"Autism Society San Francisco Bay Area (SFASA) Executive Committee"

This statement is both absurd and hypocritical. Absurd because it is ... kind of the opposite of bullying when disenfranchised and historically discriminated-against groups speak out against those who try to keep them in their place and take away their rights. Women speak up when men try to belittle their concerns about or keep them out of women's health care discussions, and autistic people speak up when non-autistic people try to speak for them, while saying awful and misleading things about them.

It's also absurd because because:

Neurodiversity is the radical idea that people with different brains deserve to be treated like full human beings. #IMFAR2017

— Sara Luterman (@slooterman) May 12, 2017

It's hypocritical because Ms. Escher is in the unfortunate habit of using that very SFASA site to lambast people she disagrees with. Ms. Escher claims it is her right to criticize evidence-based analyses of autism prevalence because she finds the author's assertions "absurd, dangerous and worthy of scorn" or when writing that a critic of the SFASA's alarmist analysis of California's autism prevalence rates is both "fantasies" and "engaging in flippant distortions to support ideological ends."

Besides, when you install yourself as a public figure, you open yourself to criticism. Part of the media's job is to hold people in public positions accountable. And when someone who is supposed to be serving a community is actually going against that community's interests while trying to silence criticism from that community, that is a problem—as anyone who follows current U.S. politics understands only too well.

What Needs to Happen Next 

Again, please write to Scott Badesch of the Autism Society of America, and to the SFASA itself, and let them know: They either own being associated with the ableist, racist, and pseudoscience material Ms. Escher publishes under the banner of Autism Society, or they install safeguards and editorial review processes to ensure the ASA Guiding Principles are not mere lip service.

Autistic people and their families already have enough rampant negativity and stigma to deal with. We really don't need a parent from within our own autism community making matters worse. I understand being scared about our kids' futures. But I'm not throwing my son under the bus to get him what he needs and deserves, and I'm not going stand by while Ms. Escher tries to do it, either. 

Rolling Stone: Your Dehumanization of Autistic People IS The Problem

Rolling Stone just published a completely dehumanizing mainstream article about autistic people. Even worse, the article was written by a parent of a high-support autistic young man, and was given the title "Luke's Best Chance: One Man's Fight for His Autistic Son" -- as if the author is his son's champion, when in fact the father is exposing Luke's most vulnerable moments, with little to no understanding or accommodation of his disabilities. And, of course, the obligatory quotes from Alison Singer and Jill Escher about how autistic people need to be housed in group settings for their own safety, as if the autistic self-advocates who fight for desegregated housing don't care about safety as well as rights.

I am, as you might guess, furious that this kind of writing is passed off as brave, honest, and necessary. Not only does it strip people like my (also high-support) son Leo of both their rights and dignity, by depicting them as problematic subhumans instead of addressing the real crisis in the supports and services that both autistic people and their families deserve -- but this kind of ableism perpetuates the kind of socially-enabled violence that led the the murders of nearly 20 people with disabilities in Japan just days ago, as Lydia Brown reminds us:

"Ableism is the constant apologetics for family members and caregivers who murder their disabled relatives -- they must have had it so hard, it must have been such a burden, you musn't judge unless you've walked in their shoes. (In the last few decades, more than 400 disabled people were murdered by relatives or caregivers, and those are only the stories we know about.)"

Here are some thoughts from me and other people on Twitter about the harmfulness of the article. If you feel the same way, please let Rolling Stone know.

The San Francisco Autism Society Deserves Better Leadership than Jill Escher. Here's Why.

Scott Badesch, President
Autism Society
4340 East-West Hwy, Suite 350
Bethesda, Maryland 20814

July 22, 2016

Dear Mr. Badesch,

I am writing to express my alarm over the unprofessional, divisive, and degrading behavior of San Francisco Autism Society President Jill Escher, and to request that the Autism Society reconsider having her lead our regional chapter.

As a fellow Bay Area parent of a high-support autistic teenager, it is extremely distressing to see Ms. Escher use her position and formal SFASA social media to openly push questionable scientific positions, belittle the needs of autistic people who can speak while making them feel excluded from the ASA community, and frame autistic people in general (and her own children specifically) as catastrophes and “damaged,” rather than deserving human beings with specific needs.

Ms. Escher demonstrated all of the positions above in a recent San Francisco AutismSociety blog post, but I'd like to highlight one passage:

“Autism has degenerated into a philosophy and personality identification rather than as the 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.”

It is horrifying to see the president of a regional Autism Society chapter display such ignorance and ableism about the very population she is supposed to be serving. It is a basic autism understanding that being able to speak does not preclude having intensive support needs in other areas of life.  

It is also not Ms. Escher’s job to decide who qualifies as autistic. As a chapter president of an organization whose guiding principles include supporting “without regard to a person’s age, race, religion, disability, gender, sexual orientation, income level or level of need on the autism spectrum,” it is her duty to support every autistic person in the Bay Area.

And as Ms. Escher has described herself as a “science junkie,” she must be aware of the research indicating that autistic people have dramatically higher-than-non-autistic suicide rates. When an autism organization official who is supposed to be in service to the autistic population dismisses legitimately autistic people as merely “quirky” – when many of those autistic people’s lives never made sense until they received an autism diagnosis, and who don’t feel like they fit anywhere except in the autism communities – she is compounding the feelings of isolation, alienation, and depression that contribute to those elevated suicide rates.

If the Autism Society is to properly support the San Francisco Bay Area region’s autistic people as well as their families, Ms. Escher cannot be allowed to use the SFASA platform to promote her extremely harmful personal opinions and agendas. And it is simply no longer enough for your organization to issue statements that Ms. Escher's writings "are not the positions of the Autism Society."

Thank you for your time,

Shannon Des Roches Rosa
Redwood City, California

When The Wrong People Write About Autism: A Review of In A Different Key

I've been trying to write a review of the new autism book In A Different Key and its media treatment for nearly two months. So here is an unbridled, frustrated, disappointed preview of my forthcoming, more measured, but no less critical long-form critique. (I live-tweeted while reading the book if you want to see my specific grievances.)

My primary issue is that In A Different Key (IADK) is so misleading, so harmful -- and presents so many outdated ableist messages about autism and autistic people as facts -- that it's hard to pick a starting point. I feel like Kevin Kline's Otto from A Fish Called Wanda, who, in practicing apologizing to John Cleese's Archie, starts out gritted-teeth polite, then erupts in expletives.

Another matter is that, as high profile mainstream media figures who use personal connections to autistic family members to validate their positions as autism authorities, authors John Donvan and Caren Zucker have for the most part openly ignored criticisms about their book. Which would make one think perhaps they're not aware, or not listening.

However, my personal experience, as both senior editor of Thinking Person's Guide to Autism and as a commenter on their public editorials, is that they are keeping a close watch on all public responses to their book, and reaching out through back channels to react to, counter, or even censor criticism. Which is ... kind of the opposite of what I'd expect from mainstream media representatives. (Or maybe not, given the workplace intolerability that led to Melissa Harris-Perry leaving MSNBC.) So it's not as though they haven't been told, or heard, that  IADK is mostly getting autism wrong.

My third concern is that, as someone whose family appears in In A Different Key's more compassionate, respectful, and accurate predecessor NeuroTribes, it would be easy to dismiss my criticisms of Donvan and Zucker's book as personal or party-line bias. Except anyone who follows my work knows I'd criticize this hurtful book regardless: as (again) senior editor of Thinking Person's Guide to Autism, as the parent of an autistic teenager who deserves better than the faux-compassion and lack of understanding shown by Donvan and Zucker, and as someone who listens to autistic people themselves about autism.

It's distressing to watch Donvan and Zucker actively ignore the ways in which autistic self-advocates are taking the lead and changing the world for the better -- not just for the "high functioning"autistics and neurodiversity movement leaders Zucker and Donvan ignorantly or willfully characterize as being so unlike my high-support son, but for autistic people of all ages and abilities.

I do feel like I need to draw out at least one major fail on the authors' part now, though: their stance on ABA therapy, and contrast it with the same topic's more nuanced, better-researched, and empathetic coverage in NeuroTribes.

Donvan and Zucker recently appeared on The New Yorker's Radio Hour (at 44:10, no transcript), talking about their book. In addition to claiming IADK is all about the compassion and acceptance and need for autistic-friendly spaces NeuroTribes actually demonstrates (which felt very much like politicians stealing  buzzwords from more successful rivals), and Zucker asserting "you can't call the person who's banging their head against the wall, or who can't care for himself, the same guy who has a PhD" (which would be news to supported living autistic PhD holders who self-injure, and reduces head-banging to a self-contained inscrutable problem rather than evidence that something is awry with the autistic person), John Donvan had this to say about ABA therapy:

"We do know that behavioral treaments, which are very intense and very expensive, can ameliorate some of the more limiting behaviors."

It's not like legitimate critiques of ABA are hard to find. Autistic researcher Michelle Dawson (dismissed by Ducker and Zonvan in IADK as a "former postal worker") wrote The Misbehavior of Behaviorists in 2004. Contemporary accounts of ABA traumatizing autistic children -- especially those whose motor planning disabilities do not allow them to demonstrate competence in ABA settings—as well as those of disillusioned ABA therapists, are widely available. Yet Donvan and Zucker endorse ABA. Why? I suspect it's IADK's almost exclusive focus on how autism affects parents and caregivers rather than autistic people—but maybe they'll respond here, and tell us.

Here, in contrast, is an excerpt from NeuroTribes about the function of "limiting behaviors," and the nastiness of ABA's design to eliminate them:

"Researchers would eventually discover that autistic people stim to reduce anxiety—and also simply because it feels good. In fact, harmless forms of self-stimulation (like flapping and fidgeting) may facilitate learning by freeing up executive-functioning resources that would otherwise be devoted to suppressing them. For Lovaas, however, self-injury, self-stimulation, and echolalia were all of a piece and equally ripe for extinction. Alone in his lab with his team of devoted grad students and experimental subjects in no position to complain, he began seeking means of punishment that could get past a review board."

Short version: Don't read In A Different Key. It's not a good book about autism. Read NeuroTribes instead, if you care about the past, present, future—and feelings—of autistic people themselves.