To Siri With Love author Judith Newman and her son Gus [image: A white woman with long curly dark hair, snuggling with her teen son, who has short dark hair, next to an image of the book To Siri With Love.]
It took me a long time to read Judith Newman's autism parenting memoir To Siri With Love, despite the author herself courteously sending me a copy. I had to nudge myself to keep going, because I don't like reading books that treat autistic people as inscrutable annoyances. I also dragged my feet due to more personal preferences: books written in breezy airport-bookstore-ready voices are not my thing, plus Newman's sense of humor put me off: Getting a discount on a hotel room because a kid was recently eaten by an alligator onsite is not amusing to me, for instance.
I am also put off by how little respect Newman's shows for autistic people. She writes passionately about how much a specific autistic adult needs support and understanding and (correctly) how badly society and systems have mistreated him—yet reveals second-hand information about his bowel habit demonstrations of distress. This actual lack of theory of mind is even more confusing given that Newman wrote Siri in part to bring more attention to non-genius autistic kids like her son Gus (who seems like the most awesome young man ever), a group she considers underrepresented. But, as as comedian and filmmaker Hari Kondabolu says in talking about minority representation in general: it can’t just be about the stereotypes; it has to be about recognizing real-life diversity and humanity. Yet Newman does nothing to expand autism understanding, bust negative autism stereotypes, or further her son's humanity; if anything To Siri With Love mostly illustrates how much her son's autistic traits annoy her.
I think Newman has failed her son by writing this book. I think her book will make life harder, not easier, for autistic people including but not limited to both our sons. Because when it comes to the treatment of autistic people, the entire world is essentially bigoted bullies and complicit bystanders. Instead of defending her son, Newman has joined the side of the bullies in declaring, “Well yeah, I love him but I get your point and actually I agree that he’s weird.”
This deeply messed up attitude needs to be called out. While it’s common if not OK for parents to be ignorant and bigoted when they come from outside a community, once you find out your own kids are part of a margnialized community you are supposed to be like Amy Acker's mom in Marvel’s X-Men-adjacent series Gifted, and get 100% on your kid's side and do whatever is necessary to protect them. (I’m not recommending going on the lam, but allying with and learning from your kids’ community? Yes, that is actually a very good idea.)
And you certainly don’t join the world's bullies in smacking down all the other autistic people who come to your kid's aid because they are part of his community and get how much being bullied hurts. Instead, you ask your kid's people—who may not be exactly like your kid but surely understand what it is like to be constantly treated like subhumans yet survive—how they did it. You learn from them. Because you and those autistic people? That particular Venn diagram is all your kid has. It should be you, Autistics, and your kid against the fucking world.
This is why it is so infuriating and hurts so much to have a mainstream author like Newman choose the side of conventional shitty attitudes about autism and autistic people when her kid needs so much more from her. Yes, changing one's deeply ingrained negative assumptions about autism is hard. Yes, it's harder when society reinforces those assumptions. But if you’re the parent of a child from a minority group yet you yourself represent and have direct connections to high-profile media channels, and you not only shirk your power and waste the opportunity to change minds but then belittle and dismiss and sabotage your son's autistic community members for having opinions about your harmful book and the people it is hurting, including your own kid? You kind of suck.
People need to be aware that, despite Newman's insistence otherwise, autistic people generally don’t think they know autistic kids better than those kids' parents do. But autistic people assuredly do know what it’s like to be an autistic kid in a way non-autistic people never can. They have logical explanations for matters Newman considers autistic mysteries, like why autistic people have meltdowns over things that make no sense to outsiders, and why those meltdowns are not manipulative tantrums. They understand why Routine is Life. They understand that it's fully possible to have phenomenal skills in some areas while also having serious disabilities. They understand why training autistic kids like they're sea lions may result in some compliance and changed behavior, but it also results in kids being traumatized and not trusting their own right to say "no." They understand that when parents like Newman contradict autistic experience on these matters, and in doing so influence other parents to dismiss autistic insights, those parents' collective autistic children will suffer.
To Siri With Love also lacks informed empathy. If Newman had spent real time researching the history of reproductive rights for people with disabilities, she would have known that her blithely casual “maybe I will sterilize Gus, maybe I won’t” attitude reinforces the life-destroying notion that disabled people shouldn't have agency over their own bodies. Yes, she includes a few obligatory citations in related history. But her tone and sources omit the core histories of Black, disabled, and other marginalized communities, including why is it so inhumane to have had their reproductive rights forcibly stripped away. As Kerima Çevik writes, "Forced sterilization is part of a larger nightmare of systemic abuse of the black body we've survived but can't forget." Self-engaged and shallow approaches like Newman's, in my opinion, contribute to the ongoing atmosphere that allows the reproductive rights of people with disabilities to remain under attack.
Newman has heard most of these criticism before, and was not pleased by them. And here's my final disappointment: Instead of listening, she went on the attack against her son's autistic brethren and their allies. While of course we all want our friends to circle the wagons for us, there is no excuse for Newman and her defenders silencing marginalized disabled people, or making fun of how people who (by definition) have communication disabilities express themselves. I am horrified by her willful abuse of her privilege, just as I was horrified by some autistic people’s calls for Newman to die, or have her kids taken away. Siri: Please delete the book "To Siri With Love" from my Kindle app. Thank you.
Me and Leo goofing off [image: Selfie of me and Leo. He is making a goofy face; I am not.]
That damned flu hit our family last week. It sucked. It took out many nodes in our people network as well.
We didn't have as awful a time as many, possibly because we'd had our shots, possibly because luck. My mom, who works at a hospital, confirmed that this is not a flu to f**k with (I am paraphrasing), as her facility has already had several deaths. It is not too late to get your flu shot!
Besides being sick, the flu made me grumpy: Even though I prefer to be home, I resent having to stay home. So as soon as everyone else was well(ish) and back to their regularly scheduled, the-hell-out-of-my-space routines, I resumed my own routine. Which sometimes includes hikes. Which, the first time out, sparked a coughing fit that shut me down and almost sent me back home. Scary, but I was fine.
After that fit, though, I kept feeling light-headed. Like I couldn't get enough air in my lungs. I decided to sleep on it. I thought I felt better after a full night with my lovely new C-PAP machine stabilizing the air pressure in my head, but by mid-morning I was feeling light-headed and sub-oxygenated again, and finally went in to see a doctor just to be sure I wasn't traipsing around with pneumonia (as has happened before).
The doctor took all my vitals, even did an EKG (which, gaah, embarrassing; I just wanted my lungs listened to and my oxygen saturation pinged). All my everything was totally fine.
And then he asked me: How is your stress level? I told him I was fine, we were getting over the flu, I have been on Prozac for more than a year and it is useful ... and then I started laughing like a hyena.
He asked why, and I said, "Well, this is just my life, and you have to understand that no one is to blame and I'm used to it, but ... well my son hasn't really slept in ten days, though he's doing OK. And his respite workers were sick for all their sessions too. And his poor dad had a super-intense week at work and powered through even though he was sick, which had me worried. So yes, I guess I have been more stressed than usual lately."
To his credit, the doctor's eyes only widened for a moment before he snapped back into professionalism, and suggested that I focus on full-diaphragm breathing, and also on paying attention to whether or not I was holding my breath (I was), and finally consider exploring other stress reduction techniques. It may be that the wee dose of Prozac I currently take needs adjusting. It may be that it will take a few more days for me to be 100%.
I think a lot of us parents whose kids need significant support have a hard time talking about our own support needs in a reasonable way. While we do not and cannot blame our kids for matters over which they have no control, it is tricky to talk about why we might need extra space or help without people assuming our kids are the problem, or feeling like we're going for a pity grab. Which, that's all rooted in society's shitty shallow attitudes towards disability, so f**k society for making yet another aspect of living our lives that much more difficult for us.
Mostly I'm telling you about my inability to recognize my own physical stress symptoms to remind you to take extra good care of, and go easy on, yourself when things are harder than usual. Because while there are bucketloads of research underscoring how acceptance and understanding reduce stress levels in parents of kids with disabilities, a positive or pragmatic "I got it" attitude isn't always going to be enough when the entire family's support needs intensify. If we're going to be the parent our family needs and also make it through these tough times ourselves, we need recognize when it's time to readjust.
We need to be aware of how being stressed out affects our bodies, how that stress can manifest in weird or seemingly unrelated physical ways, and be mindful of that weirdness not just in ourselves but in other family members, too.
The factors leading to my not-pneumonia can be considered bad luck only insofar as this country doesn't have a social support network that recognizes and properly provides respite for our families. As I noted to a friend, I have a daydream that Sweden's legendary social fabric provides night time respite workers who hang out with people with disabilities as needed, so that both they and their families get the care they deserve. And if the Swedes have no such program, I don't want to know about that. (We're all much better now.) (Remember to breathe from your diaphragm.)
"The purpose of the IACC meeting is to discuss business, agency updates, and issues related to autism spectrum disorder (ASD) research and services activities. The meeting will be open to the public and will be accessible by webcast and conference call."
If you're thinking to yourself, "Oh my comments won't make a difference," then perhaps you should take a look at the wildly varying ... quality of the submitted comments for this session, and also how few they are. Thoughtful, well-reasoned, non-profane, non-pseudoscience, non-self-loathing comments, both public and oral, are in short supply.
I am the parent of a 17-year-old high-support autistic son, and am writing regarding my concerns about his near-future integrated housing options. Those concerns are twofold: 1) I want my son to be part of his community, and 2) I am worried about ongoing efforts to erode existing civil rights safeguards that protect and guarantee integration for people with disabilities.
As this committee must be aware of the body of research supporting integrated housing options for people with disabilities, in terms of both improved quality of life and wider community disability acceptance, I will instead emphasize the basic decency factor: My son and his adult soon-to-be peers are part of their local communities, and they deserve whatever supports they need to live the lives they want to live—in those communities. I urge the committee to redouble efforts to make those options more readily available, and to identify attempts at segregated housing, veiled or outright, farm-based or "neo-institutional," as the isolating and dehumanizing options that they are.
I also urge the committee to exercise vigilance and demonstrate opposition to recent Department of Justice rollbacks on disability protections. We cannot allow civil rights for autistic people, including those integration protections upheld by Olmstead, to be decided by business interests (e.g., the sheltered workshop industry suspected to have lobbied for last month's disappointing DOJ actions). My son's housing options need to be determined by what he needs and deserves, and not by the calculations of a profit-minded entity.
I would like to thank the Committee members for both their time, and their hard work.
I may not be able to watch much of it as we're all down with the flu. But I'll try. And I hope you will, if you can, too.
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.)
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.
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.
Black Love Matters | Ayasha J. Tripp on Black Lives - YouTube
[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.]
Sola, but Never Alone | Lily Tapia on Immigration - YouTube
[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.]
Finding Grace | Molly Maxwell on Trans Rights - YouTube
[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.]
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.
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.
Salt-N-Pepa • Shoop
Eminem • Without Me
BROCKHAMPTON • GOLD
Glee Cast • Gold Digger [Glee Cast Version]
Estelle • American Boy (feat. Kanye West)
MAC MILLER • Dang! (feat. Anderson .Paak) [Radio Edit]
Chupacabras • Mueve el Esqueleto
Tito Puente • Ran Kan Kan
Machito and His Afro-Cubans • Bim Bam Bum
Lord Kitchener • Jamaica Woman
Harry Belafonte • Monkey
Harry Belafonte • Zombie Jamboree
Cab Calloway and His Orchestra • Some Of These Days
(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.]
[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 manygoodcritiquesavailable, 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.
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.
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.
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.
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.
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.
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