5.24.2017

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"
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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:
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. 

5.23.2017

The Key to Our Happy Life: Autism Acceptance

This Thursday 5/25 I'll be onstage in Oakland at the very worthy social justice storytelling event Listen for a Change, talking about why autism acceptance matters, from my (parent) perspective. If you're local, you should come! Tickets are free, donations are optional but appreciated, and it always reaches capacity. It's going to be an intense evening, as the other speakers will be talking about sexual assault and foster parenting and adoption. And I'll be doing it without any notes, eep, so if you want to see just how awkward I can be in person, this is your chance.

I'm also still coming down from IMFAR, the International Meeting For Autism Research: it is always a blast, in terms of seeing people I rarely get to see otherwise, and meeting new folks (the science being presented, that is always checkered). But as I told friends elsewhere, IMFAR is like childbirth: I forget how much it wrecks me and how much recovery time I need afterwards—until it happens again. (A roundup will go up on TPGA shortly; in the meantime, check out TPGA's coverage of the IMFAR press conference and several excellent panels, as well as our general Twitter coverage.)

IMFAR, which is changing its name to match its parent org INSAR for the 2018 meeting, is definitely getting better, in terms of incorporating the concerns of autistic people themselves. And as the #AutIMFAR chat TPGA cohosted, and which featured researchers and/or autistic community members illustrated. The value of acceptance was emphasized more than at any other IMFAR I've attended (and this was my sixth). e.g.:
Acceptance is healthy for our family. It makes a huge difference in our overall quality of life, this going with and figuring out what Leo needs, rather than fixating on what he can't do (or what others assume he can't do). We are, of course, also lucky in other areas of life, which is an undeniable factor in our overall happiness. And acceptance is not a magic wand; parts of Leo's life are still very difficult and frustrating for him, and we're still working on helping him figure that out. But acceptance means giving ourselves permission to pursue joy, so let me show you how that looked for us during April.

First, let me tell you my very favorite moment: We are beach people, which in Northern California means staying on the beach itself and enjoying the critters and the plants and the views and the sand (I like sand; sand is squishy)—but not going anywhere near the waves, because, inescapable death (gnarly rip tides, reefs, rocks, sharks). I favor Gray Whale Cove, because it tends to be littered with mussel shells, and I like shells.

When we arrived at the cove during our last visit, I didn't see any shells. And I voiced my disappointment. Then a few beats later my eagle-eyed son, who, like his dad, notices things I don't, walked up to me and presented me with this shell, which I shall treasure always:

[image: pearly inside of a mussel shell]

[image: Leo chilling on a sandy ridge at Gray Whale Cove,
next to actual mostly decomposed gray whale.]
While J. had Spring Break, we shipped her down south for a week: first with her best bud, and then with my mom. Meanwhile, I got to go visit Iz at college for the first time. She is really enjoying being a freshman, and also loves living in a cool new city with lots of concerts. I don't blame her for loving the Pacific Northwest; plus where are the rockin' vegan tiki bars in our area?

Most cocktails are vegan (like Iz) by default: win!
[image: Me and Iz; I'm sipping a Mai Tai out of a bikini
babe glass, Iz is drinking lemonade, both glasses have
the requisite tiki bar tiny umbrellas.]
Her college also does Sakura (cherry blossom time) quite well, as indicated by the throngs of tourists like me taking pictures.
[image: selfie: Me and Iz and cherry trees]

Bonus: Iz and I got to visit with our beloved SJ and family, and even frolic in a burgeoning-with-buds botanical garden.

[image: Four wavy-haired brownish-red-headed white women & girls,
with Cavalier King Charles spaniels, in magnolia grove.]
I also got to witness Iz do her college radio DJ thing, which, for someone as focused on music and concerts as this girl has been for years, is nearly a waking dream.

[image: Iz at a college radio DJ station, with computer
terminal and microphone.]
Between spring breaks, J. finally fulfilled one of her own dreams, thanks to a birthday gift card from Ep, and started a small succulents garden on our back porch. She is determined to avoid being one of those people (like her mom) who drowns succulents by not believing how infrequently they need water.
[image: Jo holding two potted succulents: a barrel cactus,
and a purple-flowering ruschia.] 
And then it was Leo's turn for spring break. We headed north, to check out a train he'd never ridden: Fort Bragg's Skunk Train. On our way, we stopped at Muir Woods and wandered through the spectacular redwoods:

You say signage, Leo says benchage
[image: Leo sitting on a big bronze plaque,
on the main Muir Woods trail.]

We stayed at a hotel in Sebastopol, that town I have long adored for its high density of rare and unusual plant nurseries and unrepentant hippies. Though the latter group unfortunately tends to conflate natural living with anti-vaxxer BS, its pervasive laissez-faire attitude means Leo was openly welcomed everywhere we went as his own enthusiastic self, whether by the staff and patrons at a local Himalayan restaurant, or while playing on a playground meant for and populated by much younger kids and their parents. Spontaneous, natural acceptance makes me exhale from the very depths of my soul, as goofy as that metaphor may be, and Leo certainly appreciates being able to relax while out in public.

[image: Leo drinking a sweet lassi yogurt
beverage at an Indian/Nepalese restaurant.]
And then we went to Ft. Bragg! And rode the Skunk Train! It was awesome! Leo was blissfully happy, so I was too. Highly recommended for train nerds, though note it's best to order tickets ahead of time (which we did).

[image: Leo and me in the Skunk Train's antique passenger car]
Leo was also a good sport about me unlocking a life goal and going to nearby Glass Beach. Which, glassy! Observe:

[image: close up of my hand covered in colorful chunks
of beach glass and pebbles.]
Leo really was OK with going to Glass Beach, because it had lovely small smooth pebbles to swish his hands through and sort, much like our own local Pebble Beach.

[image: Delighted Leo sitting on Glass Beach itself, while rubbing
beach glass and pebbles in his hands]
Our Sebastopol hotel location was based on two factors: proximity to downtown noms, and hot tub access. The second was actually the more important, as, behold:

[image: Beaming Leo in a hotel in-ground hot tub.]
Leo and I also went hiking a lot during his break, since this year's post-super rains wildflower scene was epic.

[image: Selfie of me and Leo in front of a wildflower-
filled meadow]
[image: wildflower meadow without me and Leo]
J. also got some time just for her, as is healthy in any family: A friend invited us on a bio-nerdy critter-viewing trip at a local slough. We saw otters upon otters (literally: little baby otters snuggling with their moms). And so many baby harbor seals looking like fat footballs with big eyes. And Western Grebes doing their parallel mating takeoff from the water! We learned a LOT.

[image: What an actual sea otter cuddle party looks like.]
And we did full-family (minus Iz) events as well, like this hike through yet another wildflower-exploding park, with its bonus waterfall view. J enjoyed identifying different plants, though we're not sure whether this one is a wild carrot or a Queen Anne's Lace.
[image: J pointing to bountiful white-flowering bushes]
J also had a school orchestra concert, and asked to get fancified. This is her version of what that means, which I think is adorable:

[image: J wearing a short-sleeved white dress shirt,
red lipstick, and showing off red-painted nails]
And since it finally stopped raining (not that we're ungrateful for the rain after years of drought), we busted out the hammock Leo's grandmother gave him for Christmas. He approves.



[image: Leo lounging in a rainbow-striped hammock]
The month ended with an event Leo looks forward to all year long: Surfing with Ride-A-Wave. (Santa Cruz has non-inescapable-death beaches.) This all-volunteer-staffed event lets Leo actually go surfing, and boogie boarding too. The volunteers are mostly beatific, chill veteran surfers,. 

And yet this year's experience had a short sharp WTF as we were leaving, and our wonderful, supportive surfer dude aide told me he admired what I did, because I was dealing with such a blessing and a burden. Right in front of Leo. 

I was too stunned to say anything except "he is NOT a burden," and then later tell Leo it was not cool for people to talk about him like he's not there, because he's obviously always paying attention and listening even when he's not being spoken to directly (see mussel shell anecdote above).

[image: Leo doing a beach run and getting a high-five
from his surfing assistant.]
And that, once again, is the difference between awareness and acceptance. When a kind, thoughtful man who means well, did not mean to be patronizing, and who obviously thinks Leo is a cool dude because he has just spend the entire morning having a great time with him, nevertheless thinks that our life is pitiful—then we have to get beyond autism awareness. Way beyond. We have to keep pushing for acceptance and understanding.

Please help me share that message.

----

You'll notice that most of these pics represent events in which either Seymour or I were present, not both. That's part of autism acceptance: we don't always get to travel together as a family, and that's OK. I think for many contemporary two-parent families (those for whom travel in itself is  not already a stretch), this kind of compromise seems unbearable or unreasonable—but for us, and for any family whose circumstances limit choices, compromise (which is what accommodations often are, after all) is what you do. 

5.05.2017

Skooging!

Our lucky young man was recently gifted a Skoog, a Bluetooth musical device that syncs with an iPad to play music through its squishy tactile interface. Leo LOVES it, as you can see, and enjoys playing it with hands, elbow, and even his chin.



[video description: Leo, a white teenage autistic boy, sitting at a kitchen counter, playing music with a Skoog: a semi-squishy cube that connects to an iPad and plays a different musical notes when each of its different sides are squeezed.]

While the setting in the video is for eerie reverb music, the available musical styles are many -- and the Skoog app can even play music from the iPad's iTunes library so the user can bop along on the Skoog to favorite tunes. The Skoog itself is so enchantingly tactile that Leo carries it around with him whether he's playing music or not -- it's just fun to handle.

I know a lot of students (and adults) who would probably enjoy using the Skoog to play music. The only problem is the cost, which is not cheap and which I'm glad I didn't know before. So I am doubly grateful to the folks who sent Leo his new favorite past time.

Do you, or do any students, classrooms, therapists, or other people you know, have a Skoog? I'd be interested to know what other folks are doing with them.

By the way, if you're interested in finding out more about Skoogs, and maybe trying one, and you live near an Apple store, you can sign up for a Skoog-centric Multisensory Field Trip
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