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 Métis 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.


3.17.2017

Not Irish, Today or Any Day

I'm Shannon because my oldest brother got to pick my name. I was born while he was in kindergarten, and he was sweet on a classmate with that name.

I dye my hair red. It's actually brown. Or, going by my roots, mostly gray.

I am not Irish. Family lore has it that some of us got chased out of Ireland ages ago and ended up in Scotland, but Scots is what my mom's side owns and celebrates. (My dad's side is French-Canadian.)

I will most likely be drinking margaritas tonight. Which are faintly green, true. I'll be avoiding bars with shamrock decor however.

But, hey, Happy St. Patrick's Day. 

3.16.2017

How to Find Autism Information That Will Help You

[image Black text on yellow background with a black inkspot on the left,
reading, "How to Find Autism Information That Will Help You
Shannon Des Roches Rosa
Senior Editor, Thinking Person's Guide to Autism
www.ThinkingAutismGuide.com"]
Evaluating autism information is tricky, especially on the Internet. How can we differentiate between helpful and harmful information? Why is questionable autism information dangerous? And why is it that autistic people's perspectives are so crucial to understanding autism?

These questions were the crux of a workshop I gave last weekend, at the annual Support for Families of Children With Disabilities resource fair in San Francisco, on How to Find Autism Information That Will Help You. (I also moderated the workshop on Supporting Autistic People Through Meltdowns, Aggression, and SIBs by Dr. Clarissa Kripke, Brent White, and Lindsey Anderson.)

Since I am a chronic worrier, I thought only a handful would show up. But the session was full, and people had lots of questions—plus many really wanted a record of the talk. So, here are the topics I covered, and please let me know if you have any questions.

How to Find Autism Information That Will Help You

Main takeaway: You, your students, and your child deserve to lead good lives. If you heed bad autism information, you will never learn what autistic people actually need and deserve, and everyone involved will miss the opportunity to achieve the best lives possible.

My Background, and Workshop Goals
Good Autism Info Matters
Language Matters
What Is an “Autism Expert”
  • Who do you trust, if you’re new to autism?
    • Autism professionals: Have experience with populations. But not necessarily a true understanding of autistic experience.
    • Autistic people: Lived experience. Valuable if your loved one/client/student is non-speaking, and/or you are newly diagnosed.
What to look for: Acceptance
What to look for: Legitimacy
  • How do you identify bad information? From science journalist Emily Willingham:
    • Is this practitioner or vendor promising miracles that no one else seems to achieve?
    • Is the person also asking for money?
    • Does scientific research support their claims, or are there only individual (often emotional) testimonials?
  • Does the approach aim to help, or to control?
  • Whose interests does the approach serve?
What to look for: Education
Reliable Resources

(This is not, by any means, a comprehensive list.)
Unreliable Resources

(Also not a comprehensive list; try to use what you've learned here to identify other non-useful resources.)

2.09.2017

How We Are Avoiding Despair Right Now

Like me, you may be bone-chilled about our new American reality: living under an openly plundercratic, authoritarian regime. So, here's a bit of cheer from the good folks at Vox:
"Trump is getting things done, but all presidents do that. Look at what he’s not getting done. A Republican-controlled Congress bowed to public outrage over an attempt to water down an ethics office. Trump dramatically downscaled his own executive order barring entry to the United States from seven Muslim-majority countries. He’s having unprecedented difficulty getting his Cabinet nominees confirmed even though the Senate’s rules have changed to make confirmations easier than ever. Conservatives in Congress have put their big plans to privatize Medicare and public lands on hold. And the drive to repeal the Affordable Care Act is running into very big trouble."
But the assault on everything good -- and the imperfect safety nets so many Americans rely on -- continues, especially now that IDEA-illiterate, public school enemy Betsy DeVos has been confirmed as Secretary of Education, and homophobic old school racist Jefferson Beauregard Sessions has been sworn in as Attorney General -- despite GOP-suppressed open condemnation from civil rights icon Coretta Scott King, as invoked by Sen. Elizabeth Warren.

(For those who, like me, have trouble staying abreast of the daily fuckery on their own, I recommend the roundups at WhatTheFuckJustHappenedToday.com, and also following Bigotry Watch. And remembering to question and confirm everything, and not assume that things shared by people you usually agree with are valid.)

As for the individual responsible for these ills: it may be tempting to dismiss Trump as someone who, as Ron Rosenbaum writes, does "not seem bent on anything but hideous, hurtful simplemindedness — a childishly vindictive buffoon trailing racist followers whose existence he had mainstreamed," but we also have to absorb historical parallels, and be clear-eyed about the dangers of brushing off, or solely belittling, our current president. As Rosenbaum also notes,
Hitler used the tactics of bluff masterfully, at times giving the impression of being a feckless Chaplinesque clown, at other times a sleeping serpent, at others yet a trustworthy statesman. The Weimar establishment didn’t know what to do, so they pretended this was normal. They “normalized” him."
Do not ever normalize or get complacent about our malignant Asshole-in-Chief, do not forgive his team's complicity even if they occasionally rein him in, do not stop resisting.

But, to follow up on the post title: how is our family avoiding despair right now? Besides agitating, signal boosting, and donating to front-line rights defenders? Cooking and kittens, mostly. Going places. Keeping busy and doing things. Reading detective novels about entitled assholes getting caught and punished, because for some reason my usual dystopian-themed futurist and science fiction choices have lost their allure.

Examples: Mali, Godfather Michael, and I went to see Singin' in the Rain on the big screen. Which delighted us all. And because of which I was able to observe that even Gene Kelly's forearms are fine. *Fans self*

[image: Mali in front of her Singin' in the Rain poster,
which used to live on my UCLA dorm room wall.]
Seymour taught Mali how to make a fire, which she enjoyed. I enjoyed that we were actually using our fireplace, which we hadn't yet, despite living in this house for 9 1/2 years. Related: my kids are too young to get Beavis and Butthead references.

[image: Mali in front of a roaring fireplace fire.]


Leo asked very politely to go to the Monterey Bay Aquarium, so we did that too. It was soothing for us all. I remain grateful to the places that always make our dude happy happy happy.

[image: Leo smiling inside the Monterey
Bay Aquarium wave tunnel.]
We have also been frequenting Fort Funston, because we don't have dogs but Mali wants a dog and we're not getting a dog, and all the dogs in the city of San Francisco frolic off-leash there. Plus it's a easy, pretty walk with hang-gliders flying overhead and views of Pacifica and Ocean Beach, and stone curbs for Leo to happily balance-beam stroll upon.

[image: Long shot of Mali and our friend
Amanda strolling on a Fort Funston path.]
We have also been hanging out at Nine Lives, a local no-kill cat shelter that you should definitely visit and patronize, or at least follow on Instagram if you need a (virtual) kitty fix.

[image: Me and my rack, sitting on a concrete
floor, petting lap- and adjacent kitties.]


We were mostly going to Nine Lives to commune with kitties because our one-cat household was insufficient for our kitty-snuggling needs, and our vet told us we had to wait three months after Twisty died for our house to be FIP-safe -- but then their vet told us that they were fine with us taking kitties home whenever we wanted as long as we got rid of our current litter boxes. I believe this is called "enabling."

We immediately adopted two kittens, which Mali named Pippin (so she can call her "fool of a Took" when she's rotten) and Viago (because he is a Maine coon and will have a big ruff). Pippin is as friendly and guileless as her namesake, but Viago is actually more like Petyr -- sweet, but shy with the occasional warning hiss.

[image: Mali snuggles with Pippin, a black-and-white kitten,
while Viago, a Maine Coon big kitten, abides.]
We had to wait a few days between filling out the adoption paperwork and taking the kitties home, so we kept busy with Leo-preferred outings like Transportation Days, riding CalTrain to San Francisco, then taking buses to Hayes Valley (our urban lodestone, mostly due to Isotope Comics Lounge and Leo's love of the pretzels at Fatted Calf). We also met up with Godfather Michael for avgolemono, bubbly, and french fries.

CalTrain is the very best thing ever.[image: Leo on our local commuter train.]
Leo is also spending time on the elliptical machine my cousin handed down to us. As is Seymour. Mali and I, we remain skeptical of this "exercise" thing if it doesn't involve hiking (or karate, or LARP, in her case).

If you can't find Leo, he's probably working out, dude.[image: Leo on an elliptical exercise in a cluttered garage.]

Even though I often applaud Starbucks politically -- it took spine to commit to hiring 10,000 refugees over the next five years as raised middle finger to 45's travel ban -- and am also grateful for my brief baristahood during a time of employment need, they piss me off when they calculatedly land amidst established local businesses. Our downtown recently got the fanciest Sbux in California (or so one employee told me), within a block of three thriving independent coffeehouses/patisseries -- and has visibly sucked the life out of them. Now when Leo asks to go get a straw when we're downtown, we do just that, then I get coffee at a adjacent establishment, like our beloved locally-owned Pamplemousse patisserie et café.

No one who has ever eaten a Pamplemousse
croissant could eat the sub-par Sbux one.
[image: Leo wearing a Totoro/Gizmo t-shirt,
in a cafe, holding a croissant-containing bag.]
However, the days of those green straws may be coming to an end, as we fear they are causing him jaw pain. We'll find out next week, when we talk to yet another specialist. Who, by the way, is amazing: When I made his appointment, she told me to let her know if Leo was not in the mood for an exam, and we could bring him in another time, no problem. And she takes our insurance. Whaaaa?

And then we got to bring the kittens home! For now they are staying in Mali's room, as our bratty calico Sunnie is a suck up to humans but hates all other animals. A few attempts at introducing them have not gone well. For now, Pippin is exploring and knocking things off Mali's desk and shelves.

Pippin the Explorer
[image: fluffy black and white kitten standing
on an open book on a cluttered desk.]
Viago likes to feel secure, and is mostly staying in his pop-up cube. But he also doesn't take kindly to petting stoppage, and will do paw-over-hand guidance back to his scritchingest places. He is also just the most gorgeous and softest and prettiest. And he likes treats, and I am not above bribery when it comes to cats.

How dare you stop petting me, Hyu-mahn!
[image: tabby cat pawing at a human hand.]
Pippin has also already contributed to science, and aided Seymour in capturing purring and grooming noises for an upcoming video on the wonders of cat tongues.

Helpful kitten chewing audio cords.
[image: black-and-white kitten lying next to
a handsome bearded white man who is
sitting and operating audio recording gear.]

More evidence of unease: Iz texted me to let me know she's worried about Seymour's job. Which is understandable, given the administration's quixotic assault on publicly-funded arts and media (the federal government only funds a small part of the Corporation For Public Broadcasting's budget, so taking CPB down is not really within 45's purview). However, smaller stations rely more disproportionately on those federal funds, so please do support your local PBS and NPR affiliate if you can. Also, as this delightful video Seymour passed on yesterday shows, 45's fixation on these programs is absurd from a financial point of view, as, proportionately, they are a tiny fraction of the federal budget. (Some may also wonder if these programs are less costly than maintaining our FLOTUS-in-absentia's New York residence.)

[video description: The Nerdwriter uses drunken food impulse purchases like
crackers, scallions, and cheese to illustrated how inexpensive federally-funded
arts and media programs are, per U.S. taxpayer. Auto captions available.]

We have also been -- praise the rains -- successfully foraging for mushrooms again. (Seymour would kill me if I left any geographic clues.) This past weekend we snagged five-plus pounds of gorgeous chanterelles, which Ep tells me are currently selling for $36 per pound(!), while while we streamed Iz's intentionally angsty college DJ session. Ah, modern life.

Mali the Chanterelle Queen
[image: Mali standing on a rock in a field,
proudly wielding a chanterelle mushroom.]

I even spotted some of the chanterelles! And I am not an observant person. Seymour dug them up for me because, ew dirt, when I'm not actually gardening.

She has caught a very big mushoom
[image: Me holding a huge chanterelle.]

Seymour also says not to accost random friendly Swedish hikers about how awesome their cabinet members are for ovary-trolling Trump, or to offer mushrooms to strangers even if they wax nostalgic about how mushroom foraging is a beloved past time in their homeland, and one that they'd never seen American families engaged in before. OK. One of these days I will learn social niceties.

Then we took the gorgeous chanterelles home and cooked them. Look how incredibly fresh they are inside, almost like a jicama in texture and firmness.

Less than an hour from field to kitchen.
[image: large halved chanterelle mushroom,
upside down on a white cutting board.]
Here are the foods we made with all of those mushrooms: Lamb chops with chanterelle-cabernet sauce (below), chanterelle-Oaxaca omelets, scary-to-attempt Escoffier cream of chanterelle soup (which I did not fail at!), chanterelle risotto, and last night Mali and Seymour finished off the batch by making compound chanterelle butter. Also, cooking keeps me busy and the whole family can do it together and gives us something ELSE to talk about besides fighting the recently inaugurated forces of evil.



Sadly, lamb is baaaaad for my cholesterol.[image: lamb chops with mushroom-wine sauce.]

So that's what we're doing. What are you doing? I'd like to know.

1.20.2017

Yes, He Did. Now What Can We Do?

Of all the things that kept me crying during today's transition from functioning government to proto-dystopia—gut-wrenching fear for my children's future, executive branch corruption and incompetence, Betsy DeVos's staggering ignorance about special education and grizzly bears, ACA repeal—this is what made me cry the hardest:


[image: Tweet from @ObamaWhiteHouse: an image of the Obama family holding hands with Representative John Lewis and other civil rights activists, as the front line of a marching/rolling crowd. Followed by the text "Yes we can. Yes we did. Thank you for being a part of the past eight years.]

My heart cannot grapple with the Obamas being gone. My brain cannot process the extent of the toady- and corruption-scented void the Electoral College dragged into their place.

Confronting this new reality is horrible in an even-kittens-can't-fix-it kind of way (though my current status of living in a one cat household when I'm used to taking my solace under a pile of kitties? That is not helping).

If you find yourself lapsing into despondence like me, please remember what I keep telling myself: there ARE things we can do. Here are a few:
  • Protest, of course -- whether in person, or virtually. While fully embracing our rights to do so
  • Support organizations that will keep our Con-Artist-in-Chief as accountable as anyone that slippery can be, like the Electronic Frontier Foundation (They have a 100-Day Plan, too. Check it out).
  • Added 1/21: Stay on top of the damage being done, like the LGBT Rights section being removed from the Department of Labor site, all references to climate change having disappeared from the official White House website, etc. (I recommend following Kerima Çevik's list on this matter.)
  • Continue to call (if you can) your Senators and Representatives. Calling is gold. Gold, I tell you. Keep your public servants accountable. 
  • Rally for top-notch Democratic leadership, so we can dig ourselves out of this manure pile strategically, and effectively.
I have Opinions on that last one. Specifically, I am putting my marker on Tom Perez for leader of the DNC. As I wrote earlier this week at The Establishment:
"We need a leader like Perez, a former civil rights lawyer, if we are to protect the rights and well-being of people with disabilities and push back productively against Trump’s discriminatory beliefs, staff, and supporters. We need a Chairman with Perez’s history as a supporter and enforcer of disability rights. We need his proven ability to engage with his opposition constructively, rather than through ridicule or open combat. And we need to understand that Trump’s brazen cronyism and political strip-mining can be most effectively countered by someone with Perez’s personal understanding of the damage an authoritarian leader can unleash on a country. (Perez’s maternal grandfather, formerly the Dominican Republic’s ambassador to the U.S., was declared persona non grata by dictator Rafael Trujillo.)"
I am also trying to learn from Seymour, who is tied into news sources and philosophies that fill him with reassurance during trying times. He has been patting my shoulder, a lot. Bless him (sincerely).

This reality—of living under hateful, bigoted, ignorant leadership—is an awful one. But we will overcome. If there's anything to be learned from the decades of blood, sweat, and tears civil rights progress that preceded this backslide, it's that we cannot ever stop fighting for our rights.

1.13.2017

Looming ACA Repeal: Why It Matters to Us, and How You Can Help

Leo: sleeping during a sleep study
[image: close up of a sleeping white
teen boy's hand resting on his chest,
with a glowing red oxygen sensor
on his index finger tip.]
Leo got up at 2 AM this morning, and never went back to sleep. Why? We don't know. Though he wakes up early a lot, he is also generally cheerful (and ready to party). Except for sleep deprivation on his parents' part, this is just the way things are in our house: Leo doesn't wake early on purpose, and he needs our support whenever he's on the move. (We are lucky: I work from home and can pick up nap slack if need be, and on weekends his dad and I tag-team.)

But we still want to know what is disrupting Leo's sleep -- even though we already know sleep disturbances are common for autistic people -- and if it is related to the daytime unhappiness he's been experiencing for almost a year. So we took him in for a sleep study last month, the last in a series of appointments with at least seven specialty doctors and four different scanning/monitoring procedures.

It's been a month since he did that sleep study at a local research hospital, and, according to his referring doctor (who referred him in August, mind you) the results won't be in for another week or so. I'm frustrated, because it's been months and we still don't have answers, but this is also just the way it is. Apparently the sleep study results reading backlog is huge.

Just the way it is -- and we have good insurance. And live in a major metro area with world-class medical options and facilities. And are part of a fantastic, responsive medical group. We are 1) lucky, 2) lucky, and 3) lucky. For now.

But what if the GOP's ongoing attempt to repeal the Affordable Care Act succeeds? Will that affect us? Even if it doesn't, we know -- for a fact -- that a repeal would affect many, many people with disabilities, and/or their families, not to mention far too many other Americans. According to Families USA, the Congressional attempt at ACA repeal is:
"...the biggest threat to the health care law that we’ve ever experienced. And the stakes could not be higher. All the gains we’ve made in expanding health coverage to a greater share of people and strengthening the health care system in America are at risk."
What exactly is at stake for Leo and other members of the disability community? According to NPR,
"[Before the ACA] insurers would cover rehabilitation to help people regain functions they had lost, such as walking again after a stroke, but not care needed to either gain functions patients never had, such as speech therapy for a child who never learned how to talk, or to maintain a patient's current level of function. The Affordable Care Act requires plans to offer coverage for such treatments, dubbed habilitative care, as part of the essential health benefits in plans sold to individuals and small groups."
So, losing the ACA will, for many, be catastrophic. But what can you do? If you need specific guidance or reassurance about how you can make a real difference, Kit Mead put together #SaveTheACA - Affordable Care Act Resources and Actions, which is a great resource list, with sections for:
  • Direct action, calling, and sharing stories
  • Tips for calling and contacting
  • Background information 
And Naomi Kritzer wrote straightforward guidelines on strategic approaches to contacting your Congressional representatives, whether they are supporting policies you agree with or not, and without throwing other groups under the bus.

And if you don't have ties to the autism and disability community -- and aren't incredibly wealthy -- you should still be worried because The ACA repeal may affect you too:
Republicans’ planned bill to repeal the Affordable Care Act (ACA), which is expected to be similar to the repeal bill that President Obama vetoed in January 2016, would provide an immediate windfall tax cut to the highest-income Americans while raising taxes significantly on about 7 million low- and moderate-income families.
This is such a distressing time. (Protip: if the current state of politics is as dismaying for you as it is for me and you haven't watched the series Black Mirror yet? Now is a really bad time to start.) It is easy to feel like nothing matters and you can't make a difference -- but you can, and the best way to do it is to take action by contacting your senators and representatives. Even if you think it doesn't matter, it really, really does.

Please use the guides above to help you take whatever steps you can to #ProtectOurCare. And thank you. Especially if you'd rather be like Leo, especially if you'd rather Just Keep Swimming.

Leo blissfully hanging in a relative's pool on NYE. 
[image: white teen boy from behind, in a lighted-up pool,
at night, with city lights in the background.
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