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.
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