#BoycottToSiri Needed To Happen Because Ableist Autism Parenting Memoirs Need to Stop Happening

It's gratifying to see the autistic-led #BoycottToSiri furor over Judith Newman's dangerously ableist autism parenting memoir To Siri With Love. Yet, despite the current zeitgeist of "you don't get to get away with that shit any more," Newman's treatment of autistic critics so far seems no different than any other called-out perpetrator's denial of both harm and responsibility.

I'm also frustrated that publishing-enabled bigotry remains the dominant theme of the autism parenting literary realm, with authors like Newman continuing to get kudos for their "honesty." This is doubly angering as a parent who has been pushing for better autism coverage in progressive media outlets and better autism parenting role models for years, and who was, until this point, cautiously optimistic that public tolerance of exploitative autism parenting behavior was on the wane.

Nope. Publishers still don't seem to grok the problem with parents violating autistic children's privacy for their rubbernecking readers. Fellow autism parent Ron Suskind (who wrote the New York Times book review of To Siri that sparked the outrage) is, like Newman, the kind of dangerous autism double agent we see too much of these days: nimble users of neurodiversity-friendly code words and phrases—Newman makes the case for "autistic" versus "with autism"—who nevertheless undermine their children's rights by endorsing classically indefensible themes like forced sterilization.

I get that the journey towards best practices is not always the easiest for parents of autistic kids, having myself learned many hard and heartbreaking lessons about what my son does and does not deserve, since he was first diagnosed 14 years ago. But I also know that, while I would gut a fire-breathing dragon to get my son what he needs, autistic people will always be my son's greatest champions, in terms of fighting for his rights and basic dignity, now and forever. When it comes to autism, I am required to listen to autistic people If I want to do right by my son.

With autistic primacy in autism topics in mind, here are a few examples of autistic commentary from the #BoycottToSiri Twittersphere that both you, dear Reader, and Newman need to absorb:

I hope Newman realizes that her son may well read her book as well as the reaction from his own autistic community one day, and that she'll need to have both an explanation and an apology ready when that happens (if he even tells her).

And if she needs guidance on any of these matters: I'm actually a friendly person who happens to have an active BS-meter. I would be happy to provide advice or conversation.


A #GivingTuesday Silicon Valley Call Out

Photo © Misko | Flickr/Creative Commons
[image: The donations receptacle at the British Museum.]
It's #GivingTuesday everywhere, including right here in Silicon Valley. And while I'm sure the drivers of all those brand-new Teslas, BMWs, and other shiny cars whizzing around my local streets are being extra-philanthropic today in keeping with the Valley's ethos of social service, mindful giving, and finding the Very Best Charity for one's donationeering, there's one area in which I see a big black financial hole coupled with a need for innovation: Championing of struggling autism non-profits, especially local or smaller-scale ones.

The reasons this gap exists are many, and mostly based in misconceptions and discomfort: Autism is not considered as sexy as other causes, so, being involved with a smaller-scale autism organization is perhaps not so shiny a cap-feather. Also, thanks to decades of pity-engorged campaigns like Jerry's Kids, disability-based charity efforts can be considered maudlin, or dehumanizing—approaches Silicon Valley types shun (rightfully so, in the latter case).

And then, frankly, there's the fact that just talking about, let alone being involved with, autism and disability makes many people uncomfortable, and the assumption that only family members get involved with autism causes. Even though autistic people found, run, and staff their own orgs. Even though autistic people are just people, and have always been here. Even though most of us will likely become disabled if we aren't already, and if live long enough. And even though, most significantly, Silicon Valley is an autism epicenter for autistic individuals both diagnosed and un-, who have a tendency to meet and mate and create more autistic individuals with diverse abilities and support needs.

My son Leo with NeuroTribes author Steve Silberman, 
whose article The Geek Syndrome discussed autism in SV.
[image: White teen boy and white man posing with each
other in Golden Gate Park.]
So how can Silicon Valley start participating and investing in more autism-oriented philanthropy, and taking care of its autistic own? Because autism philanthropy certainly can be done properly.

May I suggest that, the next time one of you exuberantly talented Silicon Valley balls-of-energy-and-brainpower decides to make the world a better place, and realizes that working with or donating to an autism org is a good way to do that, you follow this path:

1) Donate to, or get on or consult for the board of a local autism organization or school. Many (though not all) of these organizations are constantly scrambling for funds, and/or have boards that are underpowered, in terms of connections, energy, and influence. Levering your innovation savvy and connections to strategize new success pathways could Do. So. Much. Good. (As would coaxing other associates of yours to join or consult with those boards, or donate to related causes.)

2) Back up and do some research into how the autistic community tends to think about itself and its innate diversity, what are the most helpful ways to think about meeting autistic needs, what autistic people themselves actually want from life, where they want (and don't want) to live, what they would have wanted as kids, and what they want from autism research. Consider avoiding the mistakes well-meaning and progressive people tend to make when they support autism causes, how the Road to Hell is paved, all that. And please avoid supporting organizations that fundamentally disrespect autistic people (feel free to ask, if you are unsure).

3) Choose an organization to support, like these fine options (about which I am completely biased; the latter two are local, and all links are to their donation pages):
  • The Autistic Self-Advocacy Network: A-List autistic butt-kickers who fight for policy, law, and social change.
  • NOS Magazine: The only autistic-run media current events and topics magazine; features both snark and hard research enough for skeptics of all stripes.
  • The Morgan Autism Center: Leo's school, which still needs help to upgrade its new facilities.
  • Via West: Leo's camp, which in the wake of the recent regional fires wants to install even more safeguards to protect its campers.
Feel free to list additional worthy orgs in the comments. And please please PLEASE get involved, if you can!


Locals Who Love Storytelling and Social Justice: Come to A Night In Bold!

One week from today, the fabulous social awareness + justice storytelling project Listen For A Change is holding their first-ever gala: A Night In Bold! If you have the ability to swing it, you should come. I'll be attending, cool people are coming, and extra-cool people like founder Thai Chu (who, moons ago, used to work in Leo's classroom) will be speaking.

Thai Chu, Listen For A Change founder
[image: Photo of a Southeast Asian man
with short black hair and glasses, smiling.]
Plus the charismatic and entertaining Jennifer Myers, my frequent co-conspirator, will be co-emceeing.

Wednesday, November 29
The Green Room
401 Van Ness Ave
San Francisco, CA 94102

There are only 18 tickets left, so I'd motor on getting yours. (You can even get $30 off with the code ListenRefer.)

If you want a preview of the kind of awesomeness that's in store for you, check out the past Listen For A Change event videos below. Storyteller Molly Maxwell will be performing at A Night in Bold!

Hope to see you there.

[Video description: Ayasha J. Tripp, a Black woman with long black braids up in a ponytail, tells her story, "Black Love Matters," on the journey of self-love, worth, acceptance, and how can’t talk about Black Lives if we don’t first address black love.]

[Video description: Lily Tapia, a Latinx woman with long wavy black hair, tells her story, "Sola, but Never Alone," about her experience as a first generation immigrant navigating East Side San Jose.]

[Video description: Molly Maxwell, a white woman with long straight light brown hair, tells her story, "Finding Grace," on her family's journey in raising a transgender child.]


The Way the World Should Look: Magical Bridge Playground Comes to Redwood City

Last week my town held the groundbreaking ceremony for its own Magical Bridge playground. This is a big deal, not just for Leo and our family, but for every local with a disability who has ever felt unwelcome at, or been unable to access, the casual, fun neighborhood playgrounds and parks experience that most other residents take for granted. This is inclusion done right.

If you're not familiar with Magical Bridge, you probably will be in the near future: The Magical Bridge Foundation is creating and deploying all-abilities-and-ages playgrounds right here in Silicon Valley. And when all goes according to plan, their ideals and examples and playgrounds will take over the world! (If you want to be part of this master plan, the best option right now is to help bringing Magical Bridge playgrounds to Sunnyvale and Morgan Hill.)

Since my crew and I are locals, the Magical Bridge power duo of founder Olenka Villareal and co-founder Jill Asher asked me to be one of the folks who gave short speeches during the ceremony. Here's what I had to say:

"Hi, I’m Shannon Des Roches Rosa. I’ve lived in Redwood City since 1994, and I’ve never wanted to live anyplace else in this region. My husband and I have three kids, all of whom went to Redwood City schools, and participated in the coin drives that helped make our Magical Bridge playground happen.

Actually giving this very speech. Photo © Elaine Park
[image: Me at a podium in a park, talking with my hands.]

My middle child, Leo, was diagnosed with autism when he was three years old. And, as he got older, it became really obvious that the parks that he loved, like Maddux Park—where his big sister has a tile with a print of her baby-sized foot in the wall, and Stafford Park, and all the other wonderful parks in Redwood City were no longer as welcoming as they used to be.

Leo at Magical Bridge in Palo Alto, with Jill (L) and Olenka (R)
[image: Leo happily sitting in a spinning playround pod, between two
blonde white women wearing blue Magical Bridge t-shirts.]

"It’s hard, when your kids are different, or you’re different: sometimes other people are uncomfortable around you. And nobody wants to be around people who make you feel bad. So after a while, we started to spend more time at home, or would only go to parks and playgrounds when we knew no one else would be there. My son is a high-support mostly non-speaking guy, but he is amazing—and amazingly physical, and he always wants to hang out, run around, and play. So imagine my surprise and delight in finding out about Magical Bridge.

My kids Leo and J. playing together (!) at Magical Bridge Palo Alto
[image: Small white girl pushing a conical merry-go-round on which
her brother is lying down. Both kids seen from behind.]

"The first time I visited the Magical Bridge Playground in Palo Alto with my kids, I almost couldn’t believe that a place like it existed. And that’s not just about its accessibility: It’s not about the fact that everybody can play; it’s about the everybody does play. It’s the fact that, when I’m there, there are kids who don’t have obvious disabilities like my son does—but they will talk to him. They will take turns with him. And sometimes, we’ll realize that a few of them are part of our autism community, because they’ll want to talk about every single category of Pokemon for five straight minutes—and that’s great, too!

Leo at the Magical Bridge 2017 Halloween Party. We would *never*
go to a playground this busy, if it wasn't Magical Bridge

[image: Leo, wearing an orange-and-black Fred Flintstone costume,
seen from behind, swinging on a disc swing, at a crowded playground.]
"So I’m really excited about having a Magical Bridge Playground here in Redwood City because inclusion really matters. Because my son, and all of our friends with disabilities, whether they’re here today or not—they are human beings. With hopes, dreams, fears, and likes (my son is 17 years old; he likes Deadpool), just like you.

"But the fact that, so often, other people let disability get in the way of recognizing our shared humanity—that’s a problem. And that’s not something that happens when you have a place like Magical Bridge in Palo Alto already is, and Magical Bridge in Redwood City is going to be: It’s not about pity, it’s not about charity; it’s about making the world look the way it’s supposed to look—for everybody. And that’s why I just can’t wait until we have Magical Bridge here in our own backyard.

"Thank you so much, Olenka and Jill."

[video description: The Magical Bridge Redwood City speech-givers, doing ceremonial ground-breaking
by wearing hard hats and happily shoveling some dirt, in unison.]



[video description: Leo at 23 months, seen from overhead, 
happily running across a field to hug my legs and look up at me.]

So, this cute little dude is seventeen years old today. I blame the space-time continuum.

Below his playlist of current favorite tunes so you can celebrate being Leo virtually, as most of you won't happen to be at his jump-fest of a birthday party today eating angel food cupcakes along with the rest of us (Leo wanted vanilla cupcakes, so vanilla cupcakes he gets).

Note that many of these songs are definitely for seventeen-year-olds, and not younger individuals. And that many of them have misogynistic and ableist language, because popular music. Sigh.

  1. Salt-N-Pepa • Shoop
  2. Eminem • Without Me
  4. Glee Cast • Gold Digger [Glee Cast Version]
  5. Estelle  • American Boy (feat. Kanye West)
  6. MAC MILLER • Dang! (feat. Anderson .Paak) [Radio Edit]
  7. Chupacabras • Mueve el Esqueleto
  8. Tito Puente • Ran Kan Kan
  9. Machito and His Afro-Cubans • Bim Bam Bum
  10. Lord Kitchener • Jamaica Woman
  11. Harry Belafonte • Monkey
  12. Harry Belafonte • Zombie Jamboree
  13. Cab Calloway and His Orchestra • Some Of These Days
  14. Pokey LaFarge • Wanna Be Your Man
  15. Harry Connick, Jr. • Frosty the Snow Man
  16. Violent Femmes • Blister In the Sun
  17. Ella Mae Morse • Cow-Cow Boogie
  18. Cab Calloway • Blues In the Night
  19. Serge Gainsbourg • Pauvre Lola
  20. Danyel Gérard • Youpi ya tamouré
  21. Pernell Roberts • Early One Morning
  22. Benny Carter • Some of These Days


Me and Leo and The Doctors

(I am talking about autism pseudoscience, not saying, "Yes, they're real.")
[image: Screenshot from the TV Show The Doctors, with me gesticulating
next to B.J. Freeman, a white woman with silvery shoulder-length ombre hair.]
I was on TV show The Doctors earlier this week, and was so glad to have the opportunity to speak out against bogus, dangerous autism treatments. I was glad even thought it meant talking about all the crap we put Leo through when we didn't know any better—which is why I co-founded Thinking Person's Guide to Autism: so people can learn from me, and not make the same mistakes for lack of guidance. (What you cannot see in the video below, alas, is that I was wearing Star Trek socks in honor of being on the Paramount Studios lot.)

[video description: A segment from the TV show The Doctors, with me talking about autism
pseudoscience, and then Dr. B.J. Freeman talking about ABA therapy while I grimace.]

The show started out by exposing MMS/bleach enemas as an autism "treatment" for the abusive scam that it is, and I'm glad the hosts pointed out that if you're afraid to talk to your doctor about something you're considering doing to your kid, that should be a red flag. Then I spoke about how I fell for autism pseudoscience (sigh), and how misguided such approaches are. Here's my quote that they used:
"Every step of it perpetuating the fear and the stigma and the misunderstanding that autism is treatable and curable when autism is how your brain works." 
[image: Spreadsheet of the bogus autism supplements Leo was on in 2003,
projected on a screen behind the four hosts of The Doctors TV show.
A superimposed title reads "Dangerous Autism Treatments Exposed?"]

The show even displayed the spreadsheet of supplements and other crap that I let that carpetbagger DAN! doctor talk me into using on Leo. And about which I was pissed off, even at my most circa-2003 hopped up and credulous. Here's the actual document, if you want to scrutinize and roll your eyes more extensively:

All the supplements Leo's DAN! doctor had him on. Sigh.
[image: Spreadsheet of non-evidence-based supplements for
"autism" treatment, categorized by type versus dosage and
other factors such as "tastes like shit," above a corresponding
photograph of the bottles of supplements themselves.]
And then I got to talk about how awesome Leo is, which is always great. And even better, the show's doctors and experts mostly focused on how autism is neurology so "cures" are misguided and not helpful, that we need to focus instead on helping autistic kids be their best selves.

And then the segment turned into a group paean to ABA therapy, which made me visibly roll my eyes (they caught THAT on tape) and slow clap, because pretending like ABA is the best and only medically-approved way to help autistic children is not only not true, but is disingenuous given how much ABA gets called out by autistic people and allies as a ... dangerous autism treatment.

Dr. B.J. Freeman of UCLA, the woman next to me in the screenshot and video above, was their ABA expert, and even though she's fought against autism pseudoscience and is largely responsible for clinical recognition that sensory issues are central to being autistic, she did not address critiques of ABA in any way. (And yes, anyone who's been following along knows that Leo is in what is formally called an ABA program, so I'm working on a post—because while there are so many good critiques available, I've yet to see an analysis that tackles ABA's fundamental dangers to autistic kids, addresses why it is near-universally endorsed, and helps parents navigate those problems while doing right by their autistic kids.)

The experience of listening to doctors who seemed to care about autistic kids' welfare got me thinking about Leo's own doctors, and how great they are, and how much he has grown with them. The photo below was taken earlier this week, of Leo and his ophthalmologist Dr. Kim Cooper, who is the greatest. She has been working with Leo since he was three, and he has gotten to know her, and her office routine, and the procedures he will go through. Dr. Cooper is careful to avoid any unnecessary procedures, and often takes extra steps to accommodate Leo, such as examining his eyes with hand lenses rather than via machine, if that's what works best for him.

Leo and Dr. Cooper are friends
[image: Leo and Dr. Cooper, a white woman with glasses and short brown hair, 
in an ophthalmology exam room, smiling at each other.]
Obviously Leo has matured as well, but the fact he and Dr. Cooper have grown and learned together has made a huge difference in my son's ability to get good medical care.

I'm glad mainstream TV doctors are doing better by autistic people like Leo, even though they still have a lot to learn. And I'm glad Leo has so many good doctors in his own life.


Summer's Done. DONE.

Summer is just about officially over. Just about: Iz goes back to school on Sunday, and we'll be a quartet again for the first time since early June. I am so sad about her leaving, but also know that clingy parents suck. So, off with her, and may she have another year of self-discovery and adventure at her amazing school. As for our other offspring: Leo was thrilled to be back at school because I am boring, though he had a great time at camp. J. was happy to be reunited with her now-8th-grade friends, and enjoyed geeking out at her first CrunchRoll con, where she made me pose with a Colossal Titan head and I nearly gagged.

This summer was even more disorienting than usual, due to more visitor and visiting activity than usual. Since I'm an introvert who requires significant alone time to recharge, the result was very little writing and TPGA-ing—but I gladly chose time with my friends and family over productivity. Gladly.

Other late-summer happenings: Seymour and I revisited Mexico's Valle de Guadalupe for our anniversary (and I surprised him by arranging for some of our bestest friends to be there at the same time). The Valle was even cooler than I remembered, and is an excellent site for geeks of many stripes. Example: while out early one morning looking for sightings to add to Seymour's bird nerd list, we came across a puddle containing endangered baja killifish! (Killifish are rad because they reproduce like brine shrimp, laying eggs in puddles that completely dry up along with the eggs, until the next seasons rains come and then *blort* the eggs rehydrate and the next generation of killifish emerges.) Killifish are not exactly lionfish nor neon tetras in appearance, which sadly belies their utter badassness:

[image: sandy-colored Baja California killifish in a sandy puddle.]
Most people come to the Valle to visit the many (and increasingly many-er) wineries. I like drinking as much as anyone with French Canadian ancestry, and enjoyed visiting LechuzaTres Valles, and Retorno wineries especially—but what I really loved was the dogs lounging everywhere in the tradition of the region's ranchos, and talking with local nerds and oenophiles both aspiring and legit, as my mangled Spanish permitted.

[image: Sleeping dog by a low stone wall, in front of a vineyard.]
And while there are many truly remarkable restaurants in the region, and they are as creative as anything in the Bay Area, my personal pilgrimage site is a purveyor of Ensenada-style fish tacos: El Buen Sazon. Our simpatico and brilliant guide Israel Torres (a biologist with deep regional knowledge and connections) laughed at my insistence on hitting up the taqueria instead of one of the vinicola foodie joints, but after I explained that the very last thing I ate before getting married was, also by my insistence, a similar fish taco, he understood (though was no less amused).

[image: Close-up of fried fish tacos. OMG.]
Back home, we had more great friends stay with us for a week plus! What a treat. Their sprog and J. are seriously compatible nerdlings, which is all we could ever hope for from back when we were all pre-kids. (All you need to know: The kids spent the week watching Pacific Rim and HellBoy.) As for us, we've been in this area for nearly a quarter century, but taking visitors to see the delights of our our region in combination with the shock of beastly cold San Francisco summers is always, always fun:

[image: Our group atop San Francisco's Twin Peaks viewing area, in the fog.]
About the only non-family/friend activity I did engage in was a few tweeted spates of countering biomedical approach flogger and Generation Rescue board member, parent to the child for whom Autism Speaks was created, and cognitive dissonance/privilege denialism role model Katie Wright. I know this description is unkind of me. I am still working on a way to thoughtfully engage people who accuse me of willfully engaging in conspiracy theories for publicly posting/passing along an unnamed reporter's request for personal stories about autism pseudoscience (I actually didn't know who the reporter was; it was a request from a friend), or who claim I am supporting the suppression of free speech when I get schadenfreudey about rabid anti-vaxxer Polly Tommey getting banned from Australia because she lied on her tourist visa (she was there on a tour to promote her anti-vax movie, not there to see sights). I suppose you can read Katie's own words and decide for yourself:

[Image: Exchange between me as TPGA, and Katie Wright:
KW tweeted, "Ha- being 'gauche' rich people's
problems...Wish as much concern 4 premature deaths of autistic
people due2 intractable epilepsy #RealProblems"
Me: "You don't get to get righteous with people who fight for
*both* dignity and better research just bc you ignore
former for the latter" KW: "I get 2B anyway I want"]
There's a good reason autism pseudoscience devotees like Wright are sweating and defensive: Prominent media outlets are starting to openly denounce bogus autism approaches: NPR is going after Generation Rescue, BuzzFeed recently denounced the pseudoscience cult-think bubbles that trick parents into pursuing bogus biomedical autism "cures," and I was recently involved in an effort that I can't talk about just yet (and which may or may not pan out). But this wide-scale recognition that autism pseudoscience hurts both autistic children and their families is something I've been wanting to see for almost a decade and write about a LOT, and which people like Matt Carey at Left Brain/Right Brain and MMS/Bleach Enema denouncer Fiona O'Leary and tons of autistic writers have long been diligently countering.

Anyhow. Summer's done. I am back to writing and editing. And, due to weeks of non-productivity, am backlogged to an impressive degree. So, if you've been waiting on me for anything, or didn't get a reply regarding something you sent in the last three months, wait a week and ping me again. And then maybe again.


Summer Rhythms and Surreal Vacations

Summer is already more than halfway elapsed. I don't mind; I like this season's woozy-warm and surreal rhythms, even if that means I really truly get nothing done because of the constant schedule disorientation. (Disorientation enhanced by my brand-new, first-ever pair of glasses and their progressive lenses. I AM OLD.)

And since my family is mostly happy, I'm mostly happy. We have new bird feeders luring a constant stream of zipping, chattering hummingbirds, funky grosbeaks, and cheeky bluejays into our yard. We get to have relaxed evening picnics at foggy local beaches. The new, formerly skittish kittens have settled in, and become appropriately indolent and trusting, even letting us rub their bellies with our feet. And that f***ing "Skinny Repeal" GOP health bill failed, goddess bless. These are all things I like.

We jump-started our summer with a surreally indulgent week-long family beach vacation in Nayarit. It was made possible by the generosity of my in-laws, who were celebrating their 50th anniversary. They are the most Baucis and Philemon-y couple I know, I am glad they have been able to cherish each other this long, and I get dewy-eyed just thinking about how much they mean to each other. It was wonderful to spend so much time with them, and Seymour's brother and his family too.

For various reasons, a vacation like this hadn't really been realistic until now, so -- aside from the constant jaw-dropping from staying in such a remarkable place -- there was much casual happiness and contentedness, mixed in with the kind of joy that only comes from having an extended family in sync with each other.

Not everything, every time was perfect for Leo. Being in a new magical place is still being in a new place, and change isn't always easy. Also, being in an unfamiliar magical place, and doing so for a really long time, can also be hard, which I get—when Seymour lived in Manhattan, I rarely stayed with him for longer than five days at a time, as I quickly became overwhelmed by such a concentrated dose of Greatest City in the World. But mostly, Leo had a fantastic time, made even easier for him by Seymour's parents bringing along Leo's favorite personal assistant. This meant Leo had a lot of independence, didn't get dragged along to events that were not his style, and spent almost all of his time doing exactly what he wanted (which mostly means swimming, in proximity one of us adults, while occasionally deigning to beckon for french fries).

I don't ever want to not be grateful for this vacation, so am leaving this record as a reminder to myself:

Our room had its own mini-pool (!).
[image: Leo, Iz, and J., at dusk, lounging in a small pool.]
The food was all my and Leo's favorites. Leo enjoyed the
fluffy  pancakes (and the French fries available poolside).
I enjoyed the poached poblano eggs. 

[image: Leo sitting at an outdoor restaurant table eating
pancakes, my poblano eggs in foreground.]

Circular poolside lounge chair. We needs one, Precious
[image: Leo lounging on a circular wicker lounge chair.]

Accessibility and sensory-friendly options were available at the hotel beach
(Leo was *into* the rocking swing-beds)
[image: Beach push wheelchair next to suspended circular wicker beach bed]

There was much sleeping in. (For some.)
[image: Iz crashed out in a hotel bed with white sheets.]

Yet death was everywhere.
[image: Dead junebugs. I think.]

We had cousin time with all the cousins! This is really rare.
[image: My kids and Seymour swimming in the ocean with their cousins.]

Bubble wrap seaweed: a perfect fidget, gifted by Neptune.
[image: frond of crinkly brown seaweed with pea-like pods] 
Not all of us slept in. Many of us were like, "Dude, the pool 
is open 24/7. There is no reason we can't swim at 6 AM."
[image: Leo in his swim gear, on our patio, at dawn.]

The pool was great. Even more fun: the birds that treated the morning's 
surfeit of dead floating bugs as a floating, skimmable breakfast buffet.
[image: Leo in a palm tree-lined infinity pool next to the ocean]

The pool was also too big for a standard panorama. 
[image: panorama of an infinity pool at a hotel.]

We really, really liked relaxing and reading in the pods
[image: Leo playing with a nubby orange football while I
read next to him, inside a suspended wicker bed pod.]
I liked the beachfront food service almost as much as Leo did.
[image: A grackle (black bird) trying to steal some of the chips and salsa
from the trays inside a beachside cabana.]

OK, OK; I sometimes ogled the beach babes.
[image: Seymour lounging in a beachside cabana, eating mango with tajin]

He is one with the waves and the waves are with him. 
[image: Leo sitting in mellow shorebreak.]

Floating around (and around and around) the "river."
[image: Leo lying in a yellow innertube,
in a "floating river" pool]

We took a boat the Marietas Islands, where we snorkeled with octopuses!
[image: selfie of me on a boat, near a rocky island shore.]

Tilapia really are real fish, as J. discovered when she got to feed them.
[image: J. wearing a life jacket, feeding fish through a catamaran hatch.]
J. also got over her fear of jumping off high platforms
[image: J. jumping from a metal platform into the ocean]

And Iz got over her fear of doing flips
[image: Iz doing a flip from a boat deck into the water.]
The Marietas Islands are known for their blue-footed boobies. 
[image: Jo wearing a white t-shirt with a blue-footed booby bird,
and reading, "I (heart) Boobies".]

The suspended king-sized beach beds were our favorite.
[image: Leo sitting on a suspended bed at a beach, drinking water.]
The beach beds worked as beds, even.
[image: Leo taking a siesta on a beach bed.]

Seaweed makes a fine tiara.
[image: Me at the beach with seaweed on my head.]
Seymour and I went on a date, even.
[image: Selfie of me and my handsome husband,
dressed and groomed like adults.]

Nayarit is known for its lobster. For good reason.
[image: Platter of bifurcated grilled lobsters.]

Another nearby beach, Sayulita, was even more fun for playing in waves.
[image: Iz and Leo in bathing suits, standing in front of the water.]
And then, sniff, we had to leave.
So cool to see the earth from above.
[image: Leo with his nose pressed to an airplane window.]
Airports with trains between terminals are preferred
[image: Leo hanging on a pole inside an airport train.]
The trip back home turned out to be quite the slog, due to delays upon connecting flight delays. Leo was a good sport amidst all the shifting game plans and uncertainty and crowded spaces with crying children (they hurt his ears, and heart). I was also impressed by how he handled himself through the two extremely long customs and immigration lines at Denver, and then by how quickly and kindly the Denver TSA staff ushered him right through the security line upon request, when it turned out that a third long noisy crowded line was more than his spirit could handle.

Snuggling near the end of a looooong travel day.
[image: Me, looking like hell due to travel fatigue,
while Leo sleeps on my shoulder.]
I made Leo a book featuring the photos above, and more, so he can remember this lovely trip, too. It still seems like a dream, to me.


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.


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.