9.22.2017

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.

9.15.2017

Notes From Your Friendly Neighborhood Inclusionista

Now that summer is over, I have time to lay out my thoughts about the semi-recent SF Autism Society blog post: "Inclusion Sucks, or Why My Son With Severe Autism Has Nowhere to Swim This Summer," written by a friend, Feda Amaliti. Her article takes "inclusionistas" to task for our outlook, since people like her exuberant, high-support autistic son—a young man very like my own Leo, who also takes up a lot of space wherever he goes—have so few real-world participation opportunities, swimming or otherwise.

I want to make this as friendly a response as possible, so I think it's important to start by clarifying terms: Inclusion, my lovelies, is a real and basic human right, and it simply means both Feda's son and mine have the right to be out and about in the world, and not segregated or hidden away as used to be the default for the generations of high-support autistic people before them. Inclusion does not mean forcing our kids to be in places they don't want to be, that aren't set up for them, or in which they aren't welcome.

But even when we embrace inclusion as the baseline for our sons' rights, our sons still don't get to do all the things—but that's because of accessibility barriers, not because inclusion itself is a flawed concept. Even though The Americans with Disabilities Act (ADA) installed accessibility as the law of our land in 1990, in practice enforcement is slippery (and imperiled, call your members of Congress), as wheelchair user Robyn Powell observes:
"Of course, passage of the ADA did not make ramps and elevators magically appear; nor did it immediately halt discrimination against people with disabilities. Progress takes time."
 Accessibility law is not accessibility reality. Photo © Richard Downing
[Image: Two white women (one in a wheelchair, one sitting on the floor)
in front of a museum exhibit that says, "Despite the success of 504 and
the ADA, people with disabilities still do not enjoy full access
and inclusion in today's 
society." The wheelchair user is rolling her eyes
 and the other woman is 
making an over the the top expression
as if she's shocked by what the exhibit says.]
That gap between ADA law and universal implementation means Feda is within her rights to be angry about how few pools are accessible for guys like ours: the situation really is completely f***ing frustrating and unfair. And so the battle must continue, on all accessibility fronts, so that our our sons—who won't be kids for that much longer—get to have All The Opportunities they deserve.

The accessibility issue is also why Feda's worries about her son (or mine) being kicked out of autism conferences are misplaced. Our sons would be welcome at any autism conference worth attending—but that doesn't mean our guys would want to attend. That has to do with another aspect of accessibility: accommodations. Even though autism conferences should be autism-friendly environments, few actually commit. Some planners will make a token gesture, such as having a quiet room; but most sessions, panels, and posters occur in sensory-onslaught environments, and very few happen in a way that would engage, or be accessible to, our dudes.

All these barriers to accessibility and accommodations mean it's not reasonable, at this time, to expect our dudes to be able to go everywhere, even places that openly want to include them. Even though my own son has so worked so hard on his coping skills and boundaries, I still don't take him to places that I know are too taxing, like loud restaurants, crowded public festivals, or quiet concerts or ceremonies. Sometimes this means missing important family events. And while those situations can be bittersweet, they are also part of understanding what reasonable accommodations for Leo look like.

Not everybody understands our autistic sons' reality, which means we are constantly having to educate the people in our lives, and hope they will at least try to understand that our openly, obviously disabled dudes are usually doing the very best they can. We can help by sharing information such as why autistic meltdowns happen; why autistic "behaviors" usually have reasonable causes; why stimming can be a joyful, therapeutic and not a behavior to suppress; why grabbing food is never OK, but sometimes impulse control is a thing despite knowing better—so our friends, family, and social media network will have realistic expectations about what our sons can and cannot tolerate. Inclusion isn't going to get any easier if we let other people demand that our autistic sons only behave like non-autistic people.

The more we're out and about, the more we're visible and cheerfully unapologetic about it, the more we show the world what inclusion looks like on our sons' terms, the more other people will get what inclusion actually means. This includes (for me, at least) minimal patience with people who are uncool about our sons being in places they have every right to be, and when our dudes are not violating anyone else's space nor causing disturbances.

It's also OK, on tough days, to retreat inside a circle of comfort while we figure out how to do better by our guys next time. For me, these comfort circles mean hanging with people and going places that both want and understand how to accommodate Leo. These circles may not always be as big as I wish they were, but that's fine as long as they contain people who stick by us even when it's not easy. Who understand that Leo is the greatest dude there ever was, and also that there are some scenarios that don't work for him. Like the small local grocery store with the cashier who has witnessed Leo need to leave suddenly on more than one occasion, yet teases our dude about his teenage beard scruff; or the visiting friends who don't mind that Leo considers their guest room bathroom his bathroom, and who understand that when we accompany them to local tourist destinations, Leo and I might cleave off a little bit. Or a lot.

With Our People, at San Francisco's Exploratorium
[image: Seven white people of different ages and genders, posing happily
together. Leo is in the center, actively enjoying sitting on an oversized chair.]
What helps me when I get frustrated about the smallness of Leo's circles is to remember that Leo's generation has so many more inroads and opportunities than autistic people just one generation older: things like sensory friendly movie and theater showings, museum times, and adaptive surfing. These opportunities don't work for everyone, and some of them are kind of the opposite of inclusion, but they exist, and at the very least they let our dudes get used to those spaces and activities, and possibly lay the foundation for going to those places more spontaneously.

Leo boogie boarding with a A Walk on Water
[image: Leo, a white teen dude wearing a wetsuit, on a blue boogie board
in the ocean, with the support of a Latino man in a wetsuit too.]
But to return to the swimming thing: Our area has some great disability-centric regional pools like the Pomeroy Center in San Francisco (near the Zoo), with its open swim hours, plus the Timpany Pool at San Jose State has a drop in program. Visits to both require planning, so that spontaneity thing is missing, but at least there are options. And we have found that Leo does best in public pools with 1:1 support (sometimes a parent, sometimes a regional center aide). That's just what his life looks like, and I also realize that's not how all regional center families would choose to allocate those precious respite hours.

Surfers Leo and Mu, photo © Feda Amaliti
[image: Leo and Muhammed, a white teen dude
and a Levantine-American young man, both
wearing wetsuits and life jacket, on a beach,
overlaid with white text reading, "Leo & Muhammed
 like their mamas got nuthin but love for each other."] 
Feda says she dreams of an autism island where everyone gets her son, and nothing has to be explained. Thing is, islands like that have been under construction for a while—by the autistic community, and the disability community—the larger communities to which autistic people like our sons belong. While I adore my fellow autism parents, and have learned so much from them, I have also learned a butt-ton more from autistic and disabled adults about how to help Leo find his way in the world, including what reasonable inclusion looks like for him. So, and maybe I should have opened with this, I'd like to remind Feda that Leo and our pool (the reason we moved to our house) aren't that far away, and that we already do have her island waiting right here, whenever she and her son are ready. (Update: Feda sent me this photo of Leo and Mu, after reading this post.)

----

P.S. It's not as though Feda is the only parent conflicted, confused, or fed up about 'inclusion.' This is probably because the term 'inclusive' is pejoratively perceived in some autism parenting spaces when used as a disability rights-specific adjective, as with inclusive communities and inclusive education. So, again: We need to think about inclusion the same way we think about feminism, or fighting racism: as centering basic human rights, and as the default right thing to do.

8.31.2017

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.

7.31.2017

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.

6.10.2017

Sometimes Autism Means Missing Important Family Events

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

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

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

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

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

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

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

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

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

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

5.24.2017

Why Won't The Autism Society Rein In Jill Escher's Bigotry?

I remain dismayed over how San Francisco Autism Society (SFASA) president Jill Escher comports herself in that role: She is openly contemptuous to many of the autistic people the Autism Society of America's (ASA) Guiding Princples direct her to serve, and misuses her leadership position at the SFASA to promote her personal opinions on, authorship, funding, and promotion of questionable autism science. And recently, she veered into outright bigotry at a talk at the International Meeting for Autism Research (IMFAR), which was then published on the SFASA site.

Though I contacted Autism Society of America president Scott Badesch about my concerns last year, nothing but platitudes resulted. As Escher shows no signs of tempering her harmful approaches—and in fact responds to criticism of her actions with claims of being bullied or censored—I am now asking other people (i.e., you) to let Mr. Badesch (sbadesch@autism-society.org) know that Ms. Escher's actions are not acceptable, and that they reflect badly upon the Autism Society as a national organization.

In your message, I encourage you to focus on three recent examples of Escher's questionable actions from the SFASA site:
  1. Using racist and ableist graphics and phrasings 
  2. Framing autistic people as burdens instead of human beings with legitimate needs
  3. Claiming to be bullied by "neurodiversity advocates"
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1. Using Racist and Ableist Graphics and Phrasings

Escher's recent pre-IMFAR UCSF conference talk, which was her standard apocalyptic shpiel based on carefully massaged data about an autistic tidal wave swamping the lifespan services system (which, yes, we don't have enough services, but how about demanding that autistic people deserve to have their needs met, instead) included the graphic below. She then posted the text of that talk on the SFASA site, using this graphic yet again:
[image: White slide with black text reading, "How do we get there?
Not by drinking more autism Kool-Aid",
an image of a red Kool-Aid Man holding up a pitcher of Kool-Aid
with red text reading, "Oh, yeaaaah" over his head,  and saying,
"Autism be just quirky peeps, and there's no true increase anyway."]

How could UCSF, IMFAR, and the SFASA all allow something so offensive, with such overtly bigoted themes, to slide? I guess for the same reason that people usually don't stand up when they encounter bigotry in polite or professional society: It makes them uncomfortable, and confronting people is hard, and maybe someone else will do it.

So, OK, I'll do it: Here is why this graphic needs to be removed immediately (some reasons excluded, for brevity):

"Autism be just quirky peeps." This phrasing is either making light of African-American Vernacular English phrasing, or of people with speech difficulties. Neither one is acceptable.

Coupling this phrase with Kool-Aid imagery—as associated with bigoted African American stereotypes as fried chicken and watermelons—is making matters worse two ways: implying that African American autism community members are less intelligent because they believe what mainstream scientists tell them about autism rates, and reinforcing why African American families too often feel unwelcome in the mostly white-dominated autism communities.

I do realize Escher probably never considered that she was committing several racist fouls, but that doesn't mean her actions aren't racist. Racism is like traffic law; violations don't require intent. And I am going to say this right now: If she gets defensive about being accused of racism instead of apologizing for her missteps—even if they were due to thoughtlessness—that tells us even more about her lack of suitability for an unchecked leadership role.

"...just quirky peeps." I've already written about how dangerously ignorant and ableist (again, bigoted) this position of Ms. Escher's is, but here's a refresher:
"...as Ms. Escher has described herself as a “science junkie,” she must be aware of the research indicating that autistic people have dramatically higher-than-non-autistic suicide rates. When an autism organization official who is supposed to be in service to the autistic population dismisses legitimately autistic people as merely “quirky” – when many of those autistic people’s lives never made sense until they received an autism diagnosis, and who don’t feel like they fit anywhere except in the autism communities – she is compounding the feelings of isolation, alienation, and depression that contribute to those elevated suicide rates."
Also, mainstream science has been very clear that the increase in autism prevalence is mostly due to better identification and changes in diagnostic criteria, as documented by Tara Haelle at Forbes:
"The idea that increases in autism rates reflects changes in diagnostic definitions rather than a real change in the developmental condition's prevalence is not new. Other recent studies have found similarly that real rates of autism have not changed significantly over the past couple of decades, and a 2013 study found that identified autistic children "clustered" where resources for diagnosis and treatment were greater. In other words, where there's more access to diagnostic services, the autism rate is higher."
Impatience with mainstream science is understandable; autism research is still not doing enough for autistic people and their families. But Ms. Escher's responsibility as SFASA president is to improve lives and resources, not to force-feed SFASA families her alternative autism facts. Besides, when it comes to people scoffing at mainstream science and then self-funding and promoting their own version of autism science reality, we need to be careful. Because you know who else used a combination of pay-to-play research and catastrophizing to strike terror into people's hearts about the autistic people who have always been here? Andrew Wakefield and his anti-vaxxer faithful. We don't need any more misdirections in autism science in general, and we certainly don't need it coming from one of the organizations that is supposed to be have our community's backs.

2. Framing Autistic People as Burdens

I consider it horrifying that Ms. Escher continues to contribute to social alienation and fear of autistic people like my son and her own, most recently by compare autism to a "huge, gaping wound." Even Autism Speaks has abandoned such hyperbolic approaches.

My own autistic son, like Escher's, currently requires 24/7 support, and may need that care for the rest of his life. But, even considering the uphill policy battle to ensure our sons have decent housing options as adults, those young men are more likely to get the care they deserve if others see them as human beings, rather than as society's burdens.

3. Claiming to Be Bullied by "Neurodiversity Advocates"

Last month, Ms. Escher published a widely-derided essay on an "Autism Matrix" theory at the SFASA blog and elsewhere. After outrage from several quarters (including this one) about how the Matrix theory was ableist, assumption-ridden pseudoscience that used photos of autistic people without their permission, the essay was removed entirely from The Jewish Weekly, and the graphic at the SFASA version was removed and replaced with a thumbnail. And then shortly after that, the original Matrix post gained a new introduction:
"Dear Bay Area Autism Community, 
"One of the most troubling and counterproductive developments in the autism field over the past several years has been a growing virulence online aimed at suppressing and denigrating perspectives inconsistent with a particular neurodiversity view of autism. 
"The use of intimidation in lieu of mature and respectful discourse on critically important topics both polarizes and degrades our multi-faceted autism community. A culture of attack hurts autistic people as well as the many organizations striving to support them. 
"SFASA condemns bullying, and instead stands firm in defense of public discourse that explores and reveals the great many realities within the diverse universe we call autism. 
"Very truly yours, 
"Autism Society San Francisco Bay Area (SFASA) Executive Committee"
This statement is both absurd and hypocritical. Absurd because it is ... kind of the opposite of bullying when disenfranchised and historically discriminated-against groups speak out against those who try to keep them in their place and take away their rights. Women speak up when men try to belittle their concerns about or keep them out of women's health care discussions, and autistic people speak up when non-autistic people try to speak for them, while saying awful and misleading things about them.

It's also absurd because because:
It's hypocritical because Ms. Escher is in the unfortunate habit of using that very SFASA site to lambast people she disagrees with. Ms. Escher claims it is her right to criticize evidence-based analyses of autism prevalence because she finds the author's assertions "absurd, dangerous and worthy of scorn" or when writing that a critic of the SFASA's alarmist analysis of California's autism prevalence rates is both "fantasies" and "engaging in flippant distortions to support ideological ends."

Besides, when you install yourself as a public figure, you open yourself to criticism. Part of the media's job is to hold people in public positions accountable. And when someone who is supposed to be serving a community is actually going against that community's interests while trying to silence criticism from that community, that is a problem—as anyone who follows current U.S. politics understands only too well.

What Needs to Happen Next 

Again, please write to Scott Badesch of the Autism Society of America, and to the SFASA itself, and let them know: They either own being associated with the ableist, racist, and pseudoscience material Ms. Escher publishes under the banner of Autism Society, or they install safeguards and editorial review processes to ensure the ASA Guiding Principles are not mere lip service.

Autistic people and their families already have enough rampant negativity and stigma to deal with. We really don't need a parent from within our own autism community making matters worse. I understand being scared about our kids' futures. But I'm not throwing my son under the bus to get him what he needs and deserves, and I'm not going stand by while Ms. Escher tries to do it, either. 

5.23.2017

The Key to Our Happy Life: Autism Acceptance

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

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

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

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

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

[image: pearly inside of a mussel shell]

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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



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

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

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

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

Please help me share that message.

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