6.10.2017

Sometimes Autism Means Missing Important Family Events

Baby Leo and toddler Iz with their beloved auntie
[image: two part-Portuguese little kids with their older
Portuguese auntie, sitting together on a floral print sofa.]
The funeral for Seymour's wonderful aunt is in a few days. He and the girls and I are going, but Leo is staying home.

I wish things were different, for Leo's sake and for ours, but this is our reality, and I think more families like ours need to know it's OK to talk about being sad about missing family events—as long as we also acknowledge that when autism is the reason, that's just the way your life looks. It's not an opportunity for blame or resentment. Making hard choices (and sometimes not having choices) is part of parenting, and part of being a family. Especially in a family like ours.

But I do sometimes see parents blame their child's autism in these situations, for not getting to join or enjoy family events both large and small. And that makes me wonder why this is considered acceptable, because once you have an autistic child, that's your reality. Ideally, you adjust your expectations for what you all get to do, while trying to accommodate your child as best you can, so your child can do all the things they're capable of doing, too. And especially when so many other realities that prevent families from being together are considered completely understandable. I've been thinking about some of those understandable examples from my own family:

My maternal grandfather worked on the railroads in the British Columbia hinterlands. He was away from home three weeks out of every month, lived in a caboose, and missed much of his kids' childhoods. Sure, my mom wishes her dad had been home more, but her family made the most of the time they had together. Everyone knew that was just the way it was, and that was the job he had. And when my parents had to choose between staying near family but my dad working away from home for weeks at a time, or moving away from family but having my dad home for dinner every night, they chose the latter. And my brothers and I grew up 1500+ miles away from any relatives.

My husband's grandfather worked the tuna boats out of San Diego, was gone for weeks at a time, and so was unable to be present in his son's life the way my father-in-law, and now my husband, were and are present for their offspring. This was how life worked for many of the Portuguese families in their neighborhood; no one questioned why families had to spend so much of their time separated, or why those parents had to miss so many of their children's milestone events.

My oldest brother recently retired from the military, but while active was deployed to both Bosnia and Afghanistan—the latter while his son was still a baby. While he would have preferred to be with his family while his infant son was taking his first steps, my brother never questioned his duty (though some friends without military context wanted to know why he couldn't just tell them that he had a baby. Um.). He did his tour, thankfully returned home, and has resumed doing his super-wonky intra-Beltway strategic work.

My maternal grandmother was my "very best friend," even though she lived in another country with the rest of my extended family. When she died, I was a grad student living 3,000 miles and across a border from her, making do on a small teaching assistant stipend. I could not afford to fly to her funeral. I spent days sobbing my heart out with grief, and raging at The Fates for their horrible timing, but I didn't blame anyone. It was my choice to go to grad school on the other side of the continent.

So when we attend the funeral of the very beloved aunt (for whom Iz is named), Leo won't be coming along. As much as he would want to see his extended family, he would really not enjoy or be able to tolerate sitting through an entire Catholic funeral mass, nor attending a burial—and it's not fair to him or to the other mourners to have an unhappy, unsettled individual present during those sombre ceremonies. So he will hang with some of his favorite people at home, go to school, and then return home to hang more of his favorite people until we get back.

Thing is, I know we're lucky. If we didn't know fantastic people to hang with Leo or have the ability to hire them, I would miss the funeral—because even though I sincerely adored my husband's aunt and keep listening to her saved voicemails on my phone (doesn't everyone archive the voices of the people they love?), she's Seymour's blood and he's the one who needs to be there. If I were a single parent, the kids and I would probably all miss paying our respects.

There are endless variations on why families don't get to do the things they want to do. Some of them really are unfair, sometimes someone or something really does deserve blame. But I'd like to see more understanding as a society that autism and disability are just part of some people's lives, like the other "just life" examples I listed—plus less social enabling of blaming of autism when event hurdles happen. Because autism acceptance isn't just a theory or an idea; it's a useful and healthy approach to life.

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"
----

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

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.]

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.

3.29.2017

Reporters: Stop Excusing Murders of Disabled Children, FFS

While the internet is often a black hole, and articles published online can fade away after a news cycle or two—rarely to be read again—it is also a holding tank from which outdated and harmful articles can easily be retrieved.

Case in point: A filicide-excusing article from 2008, "Autism’s terrible toll: Parents risk hitting 'a breaking point,'" by Nancy Lofholm of the Denver Post, is apparently making the parenting group rounds again, according to writer and parent Jamie Pacton—and being shared with approval, damn it all.

Since the article does not have comments, and my email to the writer bounced, I'm posting my response here:

----

Hello Nancy,

I read your article on Autism's Terrible Toll with some dismay. I am the parent of a high-support, non-speaking autistic teenager, Leo, and I really worry that articles like yours are doing families like mine a disservice by making murder of autistic people—that is, my Leo—seem somehow understandable.

I don't believe you mean harm, quite the opposite. But I also think articles like yours are the rarely-questioned status quo. With that in mind, I'd like to share a recent article I wrote on this topic, which breaks down the role reporters like yourself can play in protecting and valuing the lives of people like my Leo. It includes links and resources for parents who are going through tough times.

Thank you for listening,

Shannon Rosa

3.28.2017

Happiness Is Resistance: Disneyland Version

We're still trying to visit Disneyland every year: Leo remains a huge fan, and making him happy usually means universal family happiness. And also because, given the current administration's dog-in-the-manger attempts to make everyone who is not a lock-step loyalist miserable, choosing to do things that make us happy is a form of resistance.

[image: J, a white tween girl,
sitting and reading at a table
outside in Tomorrowland.]
And we were happy at Disneyland, mostly. Our family dynamics are getting increasingly complicated: Leo and Mali are teens with their own interests and agendas, so they don't always want to spend time with each other—nor are they shy about making their sibling disinterest clear. (To be fair, this is exactly how I felt about my older brothers when I was twelve, and probably how they felt about me, too.) Next trip, ensuring that we actually are in The Happiest Place on Earth will mean bringing a companion for the youngest and/or another adult who enjoys hanging with my kids—ideally, my spouse. Though thankfully our youngest is now old enough that if she declines to go on Leo-preferred rides, I can plant her on a shady bench with a e-book and her phone, take Leo on the ride, and everybody wins.

More things that made us happy: We got to have dinner with beloved friends on our first night, complete with many not-quite-negronis for the adults, and nerdy balloon sword fights for the kids. One of the adults, a children's book author, told us an amusing story about dedicating one of her books to Mali: Her co-author brother was actually *in* Mali, giving a presentation, and all the kids in the audience were so thrilled that the book was dedicated to their country! The brother had to explain that in this case only, Mali was a little girl.

Sidebar: Now Mali is a much bigger girl. And is insisting on going by her middle name, sob (I have wanted to have a girl named Mali since I was Mali's age). So, alas but with respect: from now on, Mali will be J. in these pages.

About to go on "Nemo"
[image: Selfie of Leo and me. I have
on a Disneyland "Vaccinated" pin.]
Back to Disneyland: I proudly wore my Disneyland "Vaccinated pin," which you can sort of see in the photo to the left. Many thanks to my friend Matt for the gift! Or, I did wear it until Leo had me take it off. Park staff who noticed the pin smirked and thought it was great.

The root of Disneyland happiness is that it has become a place of soothing predictability and routine, where we can mostly relax because we know what we want to do, and how to do it. It is also nerd-friendly: A welcoming place for people who like to cite movie lines, as we did all day both days by paraphrasing Finding Dory, "I like Leo. Leo is squishy; "I like benches. Benches are squishy." It is also totally fine to sing Disney songs out loud—like the entire Moana Soundtrack. (We only saw an official Moana cast member once, which was disappointing.)

Strangely, even though we visited on a non-Summer, non-Holiday, non-Spring Break weekday, the park was still fairly crowded, at least for our peripheral space needs. And it was mostly full of little kids, teeming with tiny Elsas and Elenas of Avalor, and holy hell so many strollers parked everywhere, narrowing all walkways and often making it hard to get by.

Possibly this disproportionate use of space by loud tiny people and their gear even though the park was technically not busy according to the Disneyland Crowd Tracker was why we didn't see many people like Leo. I mean, I saw lots of kids in the lines at the disability access pass kiosks, and several adult friends wearing headphones, but no one as ... exuberant as my son.

Is it because the park is such a sensory assault zone? It can be really, really overwhelming. Leo is learning to self-regulate while visiting, usually with a sit-on-the-bench request. But I do know many families who just don't go to Disney parks, because they know that their kid would lose it amidst the noise and chaos and crowds (I have heard this about autistic kids of all support levels, mind you), or because the parents themselves share some of their kids' sensory sensitivities and, just, no. No.

Ladybugs Ride!
[image: Leo sitting in a red car in the spinning Ladybug Ride.]
There are some rides that Leo will not ride, due to sensory issues, like the too-jerky-for-his-taste loop-de-loop rollercoaster. Which is why I was surprised at how upset he was over the unavailability of an ride that throws its riders around even harder, the Tower of Terror. It has been closed, and is being converted into a Guardians of the Galaxy ride. We confirmed the ToT's unavailability with at least four walk-bys and constant reassurances that Yes, it is Closed. Still. (It had better be fricking awesome when it reopens, transformed.) Thank goodness the "Sully and Mike ride" and the "Ladybugs ride" were both still open, fulfilling our dude's happiness quotient for that area of the park.

Keeping the happiness alive also meant sincere dedication to going with the flow. Leo wanted many rides on the "Nemo" submarine and Star Tours rides, and we followed suit (not exactly a hardship). And after years of encouraging Leo to try to play the shoot-em-up games during the "Toy Story" ride, I've stopped prodding him. He's really not interested. It doesn't matter if it's a fine motor skill or inclination issue: He enjoys the ride, doesn't care about participating, and that is that.

We also were able to verify the rides he doesn't like or finds dull, and which we can cross off our list for now: Indiana Jones (the line is a nightmare for him, even with the disability pass), and the Jungle Cruise. I have to admit, I agree with him. Meh to both.

Tiki Room!
[image: Photo of Leo smiling
in Disney's Tiki Room.]
And then ... Leo discovered that the Tiki Room is a real place at Disneyland, and not just a song he listens to every day. Watching the pure joy of his epiphany was very sweet to witness.

However, the Tiki Room was also an example of the park's jaw-dropping cultural disconnections. How is it that, in 2017, the shlocky camp of the Tiki Room not only still exists, but exemplifies the icky disrespect to Polynesian culture that the careful, deferential creators of Disney's Moana tried so hard to avoid? How is it that, in this era of podcasts like the Stories-from-Hawaii Offshore, race/culture-exploders like CodeSwitch, and the unapologetically arch indigenous criticism/geekery of M├ętis in Space, we still have It's a Small World's USA representatives as vaguely 19th century white cowboys and farmers, occasionally paired with smiling Native Americans? How is The Jungle Cruise still featured wide-eyed "locals" getting their butts poked by rhinos, African "natives" dancing in bushes, and "head hunters"—with wares? How on earth do Splash Mountain's critter scenes, based on the no-longer-available-for-good-reason movie Song of the South, even exist? Choosing happiness doesn't exclude discussions with the kids about cultural insensitivity, and probably never will.

Star Tours! Star Tours!
[image: Leo wearing 3D
glasses on Star Tours ride]
The park employees ("cast members") had their own part in keeping our happiness going: they were so kind, and so many of them greeted Leo's expressed enthusiasms with big sincere "hello"s. When I was visibly having a tough time, an ice cream kiosk dude yelled from across Main Street to ask if I was OK, then gave me the information I needed. We had a long and pleasant conversation with the disability pass kiosk worker, about when was best time to use the pass and on which rides (morning is the worst, mid-day/mid-afternoon best)—and then, noticing that we were ending our ability to hold it together, gave us a pass to enter the last ride Leo wanted to go on immediately, which I guess they have discretion to do under urgent circumstances such as people really needing to leave the park early but also were unable to leave the park until they go on a certain ride. (The most delightful cast member by far, however, was the guy messing with the park's stringent dress/grooming code by wearing a wig with Princess Leia buns.)

And personally, I love staying at the on-site hotel, and being able to retreat as needed—despite the guilt associated with such indulgence. I adored the ease of being able to walk back into the hotel directly from California Adventure, when the kids needed a break. I appreciated getting that early "Magic Hour" of extra-low attendance park access. And I was grateful for the super-chill, cozy, kid-friendly bar/restaurant (with legitimate, and reasonably-priced, negronis) in the lobby. For some reason the hotel rooms no longer come with eponymous stationery or robe, which is too bad as I like to write letters and J. likes to lounge in the robes, but maybe that's just policy now.

It was a happy time, this latest trip to Disneyland. I learned a lot about how to make it even happier, next time.
Our Three Mouseketeers
[image: Selfie of happy Leo, me, and goofy J.]

3.26.2017

The Boy Who Can No Longer Have Green Straws

Sadness.
[image: photo of Leo reaching for a green
straw at Starbucks, even though he knows
he shouldn't have one -- and why.]
What you see to your left is a very, very sad young man.

After years of finding solace and calm in his beloved green straws, it turns out that chewing on those straws exacerbates a chronic headache issue. They don't cause the headaches, but they do make them worse. Which means that Leo shouldn't have green straws any more.

As with most matters, he is being a good sport about the green straw restriction. He still likes to go to Starbucks, but, upon arrival, has to content himself with a multigrain bagel instead.

Our thanks to all the lovely people who have mailed and personally delivered green straws to Leo over the years, and especially to the Agents of L.U.S.T. Your kindness, thoughtfulness, and cunning remain greatly appreciated.

3.20.2017

Spotting Autism Misinformation: The Credentials Gambit, and The Cherrypicker's Bluff

Last week, I gave a workshop on How to Find Autism Information That Will Help You. But then I realized I'd neglected to specifically highlight two of the most common ways in which autism misinformation spreads.

Let's call the first one the Credentials Gambit. This happens when a person is affiliated with a respected institution, and as a result people assume that they are trustworthy. Such individuals even get cited in mainstream news stories when media outlets either lack staff with the expertise needed to identify pseudoscience, and/or they prioritize clickbait. Examples include but are not limited to: 
  • Jenny McCarthy's adamantly vaccine-exempting pediatrician Dr. Jay Gordon at UCLA 
  • Anti-vax crusader "Dr. Bob" Sears of the Dr. Sears parenting advice dynasty
  • Environmental toxins autism causation researcher Dr. Irva Hertz-Picciotto of UC Davis
  • Pseudoscience-flogger Dr. Martha Herbert of, somehow, Harvard. 
    • Herbert's latest implausible culprits for autism causation include cell phones and Tylenol. She is responsible for countless eye-roll sprains.
Source: JMU Be The Change
[image: illustration of pants on fire]
We'll call the second the Cherrypicker's Bluff. In this case, a quotation or citation is taken out of context, or used inaccurately. The cherrypicker is banking that their readers will be instantly outraged—yet disinclined to actually read the article, or do any fact-checking. (This approach is also in constant use by the current U.S. administration.) 

For an autism-specific example: Anti-neurodiversity blogger J. Mitchell recently tweeted of Steve Silberman's 2016 Autism Society of America interview that:
"#stevesilberman accuses critics of #neurotribes as either skipping over parts of his book or lying. bit.ly/2mBuoQG"
But if you click through to the article, you'll notice Silberman actually said:
"I’m really puzzled by the notion that my book focuses primarily on “high-functioning” individuals. [Gives examples of high support autistic individuals from book.] These passages in the book make for very painful reading — but I have to assume that the handful of people who accuse me of “whitewashing” autism either skipped over these parts, or have another agenda for lying about my book that way."
Silberman is not therefore not bristling at critics of his book NeuroTribes in general, but rather expressing frustration with people who, well, cherrypick the book to make unsubstantiated claims about its representation of autistic people of all abilities. And rightfully so -- Mitchell was being disingenuous.

This need for constant vigilance sucks, honestly. It is both exhausting and jading to have to verify any autism information you run across. It also sucks to call people out by name, as I have here; my goal is to help you learn how to avoid questionable autism sources, not to provide the folks mentioned above with fodder for dismissing legitimate criticism as personal attacks. But to learn, you need examples. And these folks have worked hard to be just the examples we need.

But, as always: onward! We must remain skeptical, yet empathetic. And we can take heart in being able to rely on reliable autism information resources, too.


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