My Comment For the July 2024 IACC Meeting on Caregiving

Below is my comment as submitted for the July 2024 Interagency Autism Coordinating Committee meeting, which is centered on the topic of caregiving. (I hope it is somewhat coherent, as we are all currently riding COVID fever waves.) This issue really matters to me, because it is me. And I worry that the IACC tends to only hear from raging grievance parents. 

I would like to thank the IACC for centering the concerns of caregivers like me. My adult autistic son is an excellent fellow who requires full-time care. My most desperate wish on this topic is that he, his peers, and our community’s families could have sufficient and appropriate services, because too many autistic people and caregivers are floundering or in outright crisis due to lack of appropriate supports. While our complicated lives can be good ones, for us things are often far harder than they should be.

To address this caregiving resource gap, we need to increase funding for autism and disability supports, and streamline herculean application processes. Even well-informed caregivers don’t always know about available benefits, and/or don’t realize they can appeal if their application is rejected. Relatedly, we also need to take action on how caregivers—mothers especially—experience a hit to their lifetime earnings due to disproportionate care obligations, or have to leave the workforce entirely.

Me and Leo on the trail, as usual.

Aside from improving services, one of the most straightforward ways to improve caregivers’ lives is to help them understand the way their autistic people experience the world—different, yes, but also legitimate. We need to increase awareness of freely available autistic-informed caregiver guides like Start Here* by The Autistic Self Advocacy Network, which “cuts through myths and misconceptions and explains autism from an autistic perspective.”

We need to help caregivers understand that autism is inborn, meaning that trying to “cure” autism will not help their child one bit—though it will likely traumatize that child while warping their parents’ attitude towards them. Caregivers should be made clearly aware that the only thing pursuing an autism “cure” will do is make them victims of a mercenary autism pseudoscience industry. 

To help arm caregivers with beneficial autism information, we need more culturally appropriate education materials. We need to make useful autism materials freely available to families who lack autism services due to insurance or financial hurdles, or who cannot access therapeutic and developmental professionals. Such materials can help caregivers learn to proactively support even non-diagnosed autistic people’s sensory, processing, socializing, repetitive, and language traits, and start gaining coping skills to participate in society—however that looks individually.

We need to help caregivers understand that disability is both common and normal. We really need autism caregiver versions of Stacey Park Milburn’s "Disability Doulas" to help ease people into the autism caregiving community. Many of my caregiver friends and I were traumatized after our own kids’ diagnoses, due to being “mentored” by parents who turned out to resent rather than understand their kids’ autism. Our caregivers deserve nurturing community connections, not isolating horror stories.

We need to help caregivers recognize that, per the DSM-5, every autistic person is by definition disabled and deserves supports. When caregivers don’t understand the disabling complexities of autism, they can fall for dangerous stereotypes such as second-guessing the very real support needs of autistic people who don’t have communication or intellectual disabilities. As a result, those caregivers’ autistic people may become hesitant to ask for crucial supports, and can become more likely to experience mental health crises or even suicidality. 

When caregivers of autistic people who have a range of complex and intense support needs doubt their charges’ humanity and agency, and/or mistakenly conflate co-occurring conditions with autism, those caregivers can profoundly limit their autistic person’s quality of life. We need to encourage these caregivers to not give up on communication options and learning opportunities for their autistic people. We also need to help caregivers recognize when “autistic behaviors” are actually due to legitimate environmental or medical issues.  

To improve the chances that caregivers can get the best care for their autistic people, we need to support autistic professionals, for their own well-being and also so we can have more of them available. The autistic professional insider perspective is crucial, as "Autistic people may be at risk for poorer health, and at least part of this is because of being misunderstood by the neurotypical majority." The more caregivers can rely on autistic-informed care, the better their and their autistic person’s lives will be.

We also need to stop overlooking our significant population of autistic caregivers. So many parents find out they are autistic only after their child is diagnosed, and being an autistic parent is hard for many reasons, including competing access needs (kids are loud, messy, and disruptive to routines) and because other parents may not click with you. Autistic caregivers deserve more, and more tailored, supports.

We to help caregivers understand that ABA therapy, though touted as a “gold standard,” has a questionable evidence base, largely misunderstands the needs of autistic children, and that autistic adults who have been through ABA often report deep trauma. Caregivers who are forced to employ ABA need to know that they can continue to advocate for their child.

We need to help caregivers break though misconceptions about education and community: Inclusive education can work, and segregated settings compound isolation not just of our autistic students but of our autistic adults. Caregivers need to be able to make informed choices about where their autistic people live and spend their days.

We need more, and more appropriate, day programs for our autistic adults, as too many existing programs refuse to take clients like my son who have “excessive behaviors.” This dearth of appropriate post-graduation services disadvantages everyone involved, can leave both autistic adults and their caregivers untethered and isolated, and forces many caregivers to leave their jobs.

Most of all, we need to recognize that when our autistic family members thrive, our entire families thrive. And that can’t happen if our caregivers don’t have the resources they need.

Thank you for your time.

Shannon Rosa
Senior Editor
Thinking Person’s Guide to Autism
www.ThinkingAutismGuide.com

On Always Always Always Learning

We are also Always, Always, Always Hiking.
[image: White teen boy with short brown hair wearing a baseball cap, seen from
behind, sitting on a wooden park bench overlooking the San Francisco Bay.]

My partially–speaking autistic son recently learned to say "excuse me" after he farts. 

This is important for many reasons. We are a gassy crew, and we fart a lot, so this is a good skill for all of us to have. But it's also important from the perspective of having confidence in him, in that he is always learning, and that we need to keep encouraging him to do so. 

Like many autistic people, my son requires often requires a lot of practice before acquiring a new skill. Not always, but often. We practiced the post-explosive apology for weeks before it stuck—though, like his siblings and mother, he still requires the occasional reminder about best flatulence practices. 

He's 19. He's nearing the age at which high-support disabled people like him are often approaching the transition from structured school environments into the great unsupported unknown of adulthood. I worry that for many parents, this transition is accompanied by a tendency to abandon learning now that our offspring are "grown." Or settling into doing things for our kids, because it's easier—things like toweling off after bathing when they can do it with support, guidance and/or patience—but it takes less time when we do it for them. 

But, we also know from autistic people who are able to self-report that they continue to acquire skills throughout their lives, more so than their non-autistic peers. So I am always encouraging the learning. Sometimes this means me talking about everything he and I see as we go on our many many local socially-distanced hikes, sometimes this means reading books about interesting things, sometimes this means having podcasts playing as we drive—when he's interested in them, that is; another recently taught skill is his ability to navigate the bluetooth enabled car stereo system, and like many teen boys, our hero has decided musical preferences. 

Whether he demonstrates to me that he has learned is less important to me than providing opportunities for him to learn, in ways that he's amenable to. Though when he does demonstrate learning—usually through an offhanded comment, or "suddenly" deciding to act on a skill he's been practicing, I am always glad for him, because he's usually glad for himself.

And also, we are all always learning, aren't we? (Right? Or am I being naive yet again?) I am obsessive with the podcasts, though I get irritated when they get banter-y or chatty because I want the information please. I try my best to listen to disability advocates who are destroying accessibility and ableism barriers while building policy that will make live easier for my son and his entire disability community. And I still feel like I know so, so little and never enough, and of course still make big mistakes. But even when learning is painful and humiliating, in my experience it is worth doing. 

Thanks For Making Me Cry, Ride a Wave

Let me wipe off my still-foggy glasses and explain why that title may not mean what you think it means.

This past weekend, Leo participated in Ride A Wave—that glorious all-volunteer supported and inclusive surfing, boogie boarding, and kayaking extravaganza for people with disabilities. For our dude, this yearly "going surfing" is an annual immersion in bliss.

While Leo looks forward to his yearly Ride A Wave day for months, this time he was so excited that he woke up several hours before the morning fun started (props to my tag-team partner Seymour for being up for those several hours; Leo's boundless energy and stamina are ideally matched to companions who have had a full night's sleep).

Leo sang happily as the two of us drove to the beach (Allan Sherman's "When I Was A Lad," "Early One Morning," and "Baby Beluga" are currently on heavy rotation.) Once we arrived at the Santa Cruz Wharf, we were paired with the two volunteer "Buddies" who became Leo's support team on the beach—helping him get into his swim suit, signing him up for events, whooping it up every time he caught a wave. The Buddies tend to be good eggs, but these two were especially great: intuitively following and respecting my cues about interacting with Leo and keeping him safe—and reciprocating the happiness Leo exuded all morning long.

As I told one of his Buddies, getting to spend the morning watching Leo in a state of perpetual delight because of people who not only volunteer to help him have the best day ever at the beach by his definition, but who are as happy for him as I am, is the emotional equivalent of a spa day for me.

But that wasn't why I cried.

Again, let me explain. We've always had a great time at Ride A Wave day; Leo because I'm fairly certain he's a selkie, and me because if my kids are happy then I'm happy. But this year was a special one.

You will need to take my word for what happened as I didn't snap that many pictures and didn't get video (for once, trying not to let my camera get between me and being in the presence of awesomeness), but what the photo below shows is Leo surrounded by a squadron of young wetsuited surf buddies. And what you really can't see is that Leo is doing what he loves the most—bobbing and pogoing in the water. And what made me cry is what happened next.

[image: Photo of wetsuited Leo and with a circle of wetsuited
tweens, with a boogie board, in waist-deep ocean waves.]

All the surf buddies spontaneously bobbed and pogo'd with him. Not because anyone told them to—there were no adults or coaches out there in the waves—but because they were in sync with Leo and going with his flow, so everyone was caught up in his irrepressible joy.

Cue my sobbing (while pretending not to be).

That's all I want for our sweet, wonderful guy—for other people to respect how he moves through the world, and approach him without hesitation or awkwardness or pity. I want him to know, viscerally, what it's like to be plugged into that kind of spontaneous human synchronicity. That way, when he encounters people who are yet again awkward, or unkind, or patronizing, he understands that it does NOT have to be that way, and he does NOT have to put up with it. Because he's experienced the way he should be treated, and he know's that's an achievable reality.

Explaining this to his buddies on shore while trying to pretend I wasn't crying was not entirely successful, so I'm telling you, now.

----

Coda: Leo also got to meet Spiderman during this year's Ride A Wave. For a Spiderverse fan (who also likes to sing "Sunflower," now that I think about it), that's a green straw-level bonus on a day that was already as great as it gets.

[image: Leo fist-bumping Spiderman at a beach.]

Dear Other Mothers of Autistic Kids: I See You

A Mother's Day gift from Leo. 
[image: Small decorated terra cotta pot with
emerging seedlings. A printed icon attached to
a popsicle stick is stuck in the soil, has illustrations
of four flowers, and reads, "Flowers for Mom".]

For Mother's Day here in the United States, I want all you other moms of autistic kids to know that I see you, and that you are not alone.

----

I see your joys, and I see your sorrows.

I see you when you are having a tough day yet still manage to interact with your child with respect and kindness.

I see you when you keep your voice calm during crises, because you know your child is extra-sensitive to emotions and they need you to help them keep it together, or get it back together.

I see you when you don't blame your kid for things they can't help, like meltdowns and accidentally breaking things.

I see you when you can't afford to replace the broken things, and you still don't blame your child.

I see you when you defend and protect your child when other people try to blame them for things they can't help.

I see you when you stand up to people who think they can talk smack about your child like they aren't present, and may be absorbing every word.

I see you when you correct, side-eye, or edge away from people who don't know any better than to view your parenting life as something to pity.

I see you when you are cool with your kid's visceral need to sing, hum, flap, stomp, stim, or line things up, even in public—and you make sure your kid knows it.

I see you when you negotiate with siblings who have a tough time with their autistic sibling singing, humming, flapping, stomping, stimming, and lining things up, because they have their own sensory and neurodivergence things going on.

I see you when you teach your child, and gently remind them, about respecting other people's spaces and sensory needs too.

I see you when you teach their child that their "no" matters, however they express it.

I see you when you just don't go some places, because they're too stressful for your child.

I see you when you make a hasty exit from places you really thought your child would like, because they turn out to be too overwhelming for your child.

I see you when you retry going to those places a few years later, because your child is growing and maturing and maybe they'll be OK with those places now.

I see you when you visit places repeatedly because they make your child so happy, and when your child is happy, so are you.

----

I see you struggle after your child's autism diagnosis, because everything is so new and overwhelming, and useful, hopeful information is so frustratingly hard to find.

I see you when family members just don't know what to say, and other parent friends drift away.

I see you when you find parents who do get what your kind of parenting is like, and help you find the useful, hopeful information you need. I see you embrace that solidarity.

I see you when you find private spaces to openly talk about your kids and your parenting, and with people who empathize and understand—without judging you or violating your trust.

I see you when people say awful things to you about your parenting, and you shake it off because people who think insults are the same thing as arguments aren't worth your time.

I see you when you cry because mean and thoughtless people talking smack about you or your kid sucks, and sometimes you can't just shake off mean and thoughtless speech.

I see you when you struggle but take the time to listen to other parents of autistic kids who are struggling, too.

I see you when you listen to people who make you rethink your approaches to parenting and autism, even when it's hard to hear you may have made mistakes.

I see you when you realize that your autistic child experiences the world very differently than you do, because you aren't autistic.

I see you when you seek out autistic perspectives to help you understand how your child experiences the world, so you can advocate for them effectively and empathetically.

I see you when you realize that, hot damn, everything is so much easier for everyone in your family now that you have a better understanding of why your autistic child does what they do and wants what they want.

I see you when you have a hard time not because your child is autistic, but because you share some of their autistic traits, and having those traits makes the demands of parenting extra-hard.

I see you when you tell people that, actually, you're autistic too—and they suddenly start treating you differently.

I see you when you realize there are really OMG really a lot of other autistic and neurodivergent parents of other autistic kids out there—even if many of them don't realize it yet.

I see you when you reach out to and mentor other parents who are new to parenting autistic kids.

----

I see you when you're up in the middle of the night because your kid is up, too—and it's hard, but you don't blame your kid.

I see you when you can't help falling asleep the moment you sit down.

I see you when the school bus driver then knocks on your door with your kid because you really did not mean to fall asleep and you spend at least five minutes apologizing while horrified.

I see you when you triage matters like laundry and ideally balanced meals because there are only so many hours in the day and at least some of those need to involve you sleeping.

I see you when you decide that a life spent triaging is still a full life.

I see you when you go to the mat for your child's education and accommodations and communication and medical needs, even when those are uphill and seemingly fruitless battles—and even when you are sleep-deprived.

----

I see you when you never have a day off of parenting, and still find space for laughter and fun.

I see you when you never have a day off of parenting, and wonder how you're going to get through the next few hours.

I see you when you don't have the supports and respite you and your child need and deserve.

I see you when you never give up on advocating for your child.

I see your joy when your child does something "they" said your child might never do.

I see you when you accept that your child may never do some things, and you adapt.

I see you when you make sure your child knows how much you love them, and that you don't expect them to show their love in exactly the same way.

I see you when you learn to see what makes your child happy, and share in their specific and intense joys.

I see you when you stop caring about whatever "normal" means, and start cherishing "happy" or even "content" instead.

I see you when you are your child's safe space, especially when the rest of the world makes being autistic so hard and so stressful.

...and I hope you have other people who see you too, and listen to you, and love you for everything you do for your family.

Leo's Adventures in Disneyland, 2019 Edition

The Monsters, Inc ride is a perennial fave.
[image: Leo in front of a "We're Monsters, Inc."
poster featuring four monsters posing jovially.]

It's been eight years since Leo's first successful trip to Disneyland, when we discovered that, for him, the Land of Mouse really is The Happiest Place on Earth. We now try to make annual pilgrimages, because Leo deserves to be happy and when we can make that happen, we do.

Here's how the latest trip went, and how we made it happen—because unfortunately, visiting Disneyland is also expensive AF. Note: this go 'round it was just me and Leo. Seymour and Iz were in New Zealand (Iz is doing a college semester abroad*) and J and Leo have some competing access things going on just now. J drove down with us, but spent the night at a local friend's and went to the park with them separately. We did meet up with J and crew once to check in.

One of the most pricey parts of Disneyland is the tickets. Leo wants to see both parks, not just one, as he has has a two-park circuit that we follow for optimal joy. That means $$$ for a park-hopper pass. Luckily, we live in California, and our regional center has a program called Community Involvement (CI) that provides discounted Disneyland tickets. If you live in California and you or your child are regional center clients, ask about this! (We were lucky; our social worker told us about the tickets, but just because yours hasn't doesn't meant it's not an option. Ask!) The CI dates available are limited and subject to blackouts, but the savings are significant—and allow provide discounts for a limited number of accompanying family members.

More routine/joy: we stayed at the Grand Californian Hotel. This is important, because being a hotel guest means access to a "Magic Hour" for hotel and other select pass holders, before the parks open to the general public, and during which lines are extra not-crowded. However this meant we had to pay for the hotel room. For this, I am beyond grateful to Leo's grandparents and other family members who understand how much going to Disneyland means to Leo, and gave him cash for his birthday and Christmas that we were able to use for the hotel room—because otherwise and even during "low season," room prices at this place verge on imaginary. (Though the same Magic Hour benefits hold for guests of the Disneyland Hotel and Paradise Pier hotels, which are slightly less astronomically priced, Leo's routine for as long as he's been going has been the Grand Californian.)

[image: Selfie of me and Leo in a hotel hot tub.]

Staying at the hotel meant using the hot tub and pool the night before. This is important. Because we always use the hot tub and pool when we go to Disneyland, and Routine is Life. We both like pools and hot tubs.

We have most things Disney figured out. The one unpredictable factor is lining up to enter the park in the morning. We need to be there relatively early because if we have to wait in a long line at Town Hall to get Leo set up for Disability Access Service, then that cuts into his Magic Hour relaxing rides time. However, if we end up being surrounded by kids who are crying or whining (which is an act of the goddesses and no one's fault), that is distressing to Leo and we can't stay in line.

As always, we gave the park entry waiting line a solid try. And after a few minutes, we were surrounded by crying kids. I tried not to panic, and asked the people standing behind us if they would hold our spot, which they kindly did. I then took Leo around the side of the entry kiosks to talk to a gate agent, and told them about our pickle. Much to my relief, they were able to help us out. We might not need this accommodation next time, but it is good to know that the staff will make those kinds of accommodations if requested.

FU Straw Ban
[image: Leo waiting to ride Star Tours, looking hip with
3D glasses, nonchalant attitude, and mouth-held straw.]

We were the first people in line at the Disneyland Town Hall, and Leo's Disability Access Service (DAS) pass—which is tied to the entrance ticket you bring everywhere with you—was activted forthwith. So many exhalations.

The current version of the pass (there have been several iterations over the past few years) meets Leo's needs beautifully. If you've not used the DAS before: it makes it possible for people like Leo who have a hard time waiting in lines to have the shortest line experience possible. This doesn't mean jumping lines, though; you get assigned a "return time" for the FastPass or disabled access line entrances that is roughly equivalent to the ride's current standby (regular folks, non-FastPass) waiting) time. This means that if the wait time for Pirates of the Caribbean is 45 minutes, you get to spend those 45 minutes doing something that is not waiting in line, like going to the Tiki Room—and then you can come back to the FastPass entrance any time after your DAS-appointed return time.

(Apparently you can also use the DAS in conjunction with the regular FastPass service, but that is more planning and executive function juggling than my head had space for, and we were perfectly happy using the DAS alone.)

[image: Photo of a MedAlert safety bracelet
clipped onto Leo's pants' belt loop.]

A final logistics note: As Leo has, on occasion, followed his enthusiasm more quickly than I could keep up with him, I wanted to ensure he had a visible form of ID with my phone number and his MedicAlert info on it (even though, as I learned, The Mouse has eyes everywhere and escaped kids get returned to parents surprisingly quickly). We used Safety Tats for a while, but they aren't that obvious, especially during cold weather which means long sleeves, and they also don't have enough information for some of Leo's medical considerations. Leo is also not a fan of safety bracelets or other medical ID tags. But I figured out that if I use a metal binder ring to attach a metal safety bracelet to his belt loop, he is not only OK with that but considers the bracelet chain an excellent fidget. Another win-win.

[video description: Leo rubbing his hand along the wavy
metal guardrail at the Nemo submarine ride line.]

Overall, a lovely time was had. Though it was a holiday week, it was a Tuesday, plus the park wasn't as crowded as the IsItPacked Disneyland Crowd Forecast foretold. Leo got to ride all his rides, several more than once. We found more spots of joy, like the stim-worthy wavy metal railguards along the lines at the Finding Nemo submarine ride. We also found many spots of quiet and regrouping and rest, such as the circumnavigating Disneyland Train that lets you ride indefinitely. These were important, as were the Benches Everywhere (though New Orleans Square could still use more benches). 

The only real bummer was the brightness. The weather report said it was going to be overcast, so I didn't bring hats. Which meant that once we found ourselves squinting (a situation that leads to horrible headaches for our young hero), hats needed to be purchased. And there is no getting a non-merch-branded hat in Disneyland; I looked. So I ended up, reluctantly, with a Darth Vader trucker hat while my companion scored a "P. Sherman, 42 Wallaby Way, Sydney" baseball cap that was the least obnoxious option. (I am old and grumpy and getting tired of branding and merch everything everywhere all the time. Except for at the new Guardians of the Galaxy ride. That was cool.)

The Guardians of the Galaxy ride has so many Easter eggs!
[image: Leo next to a painting of The Collector and The Master
laughing while playing a game at a table.]

A final happy result: Leo spent the months leading up to our visit watching Disney park ride-throughs from parks all over the world. As we made him a bunch of his own ride videos while were were there, and made them part of his YouTube channel, he can now watch videos of himself riding rides at Disneylang on our YouTube-connected TV as easily as he can watch his favorite Netflix shows and DVDs. Sometimes I really do love living in the future:

[image: Selfie of me and J in front of the Vasquez Rocks.]

It gets better coda: Road trips have sometimes been hard with our youngest two. It is a mark of how much they have both matured that when the main freeway pass between the central valley and Los Angeles got shut down due to snow, and we ended up sitting on the freeway for four hours and were eventually turned around and had to to do a three-hour detour and did not reach our destination until 1:30 AM, they were both good sports about it and the situation was totally manageable. It is a mark of how my approach to life has changed that as long as my kids were not having a hard time, I was cool with whatever needed to be done, and am just glad it all worked out, and did not have a panic attack or meltdown. Plus when we woke up, we discovered we were five minutes away from one of the most iconic Star Trek locations in the Southland. It's hard to be mad about geekery opportunities.

 ----

[image: Photo of Seymour's hand holding up his gold wedding
ring next to the volcano that was the film version of Mt. Doom.]

*When I studied abroad in Ghana nearly 30 years ago, making a phone call to my parents was only possible at the airport, and I had to arrange the phone via mail weeks in advance—because that's how long the mail took. In contrast, Iz can and does text us all day long, time differences allowing (she is three hours behind me, but in tomorrow's time). I much prefer the contemporary situation, now that I'm in the parent position. Also: She and Seymour found the one true ring!

How You Can Honor World Autism Acceptance Day

[image: Me and my three kids sitting on a bench in a San Francisco park
in 2015, eating ice cream and enjoying each other's company.]

People all over the planet are observing World Autism Awareness Day today. My autistic friends and my family, however, prefer to follow The Autistic Self-Advocacy's example and observe Autism Acceptance Day.

Why acceptance? Because autistic people like my teenage son Leo deserve the love and respect that come with acceptance, not merely acknowledgment that autism exists. Awareness is passive. Acceptance is a choice.

Here are ten ways you can honor Autism Acceptance Day, and autistic people of all ages:

1) Honor communication. Everyone communicates. That includes autistic people of all abilities. If your autistic loved one struggles with spoken language, the best action you can take in their honor is to help them find a communication system that works for them, whether scripted speech, typing, a symbol-to-speech device or app, sign language, or a letter board.

You also need to understand that an autistic person’s spoken words may not accurately represent what they’re thinking, or their intentions. When my son jumps up and sings “The cold never bothered me anyway!” at me, I understand he's telling me that his current environmental temperature needs to change. If he asks me to repeat phrases after him, he's asking for reassurance.

Autistic communication isn't necessarily verbal or language-based; sometimes communication happens through behavior, like a child refusing to get out of bed, or being upset with routines that usually comfort them. It's important to pay attention to this kind of communication; while it may be a show of independence, behavioral changes can also be an autistic person's only external sign of illness.

Also honor autistic ability to participate in communication. My son, like many autistic folk, takes a few moments to process spoken words. But he understands most everything people say to him. There is no need to talk to him in a sing-song voice, or speak extra slowly. Besides, where is the harm in talking to him like you would any other teenager?

2) Honor competence. Recognize the things your autistic loved can do, and encourage them to do them. Have patience if the learning takes a bit longer than you might expect—autistic kids' legendary ability to “suddenly” do things like read or ride a bike is often the result of extended practicing, even if, at the time, it seems the practicing wasn't clicking . So please try to avoid doing things for your kids that they are willing and able to do for themselves. Their independence and sense of self-worth need to trump your momentary convenience.

And don't forget to presume competence. This doesn’t mean you should assume every non-speaking autistic child is a hidden genius; it means you should always treat every child like a worthy human being. It means, as the autistic writer/self-advocate Julia Bascom tells it, remembering that:

"...talking about someone in front of them, dehumanization, infantilization, segregation—are wrong to do to anybody. There’s not an IQ threshold for being treated with respect, for being included, for being treated like a person.”

3) Honor interests (even if you think they are age-inappropriate). So what if your teenager loves watching Curious George, or your eight-year-old only wants to talk about forensic pathology? Seriously, where is the harm in encouraging such interests if they make your autistic child or loved one (or self) happy? As autistic advocate Lydia Wayman writes,

"I am finishing my Master’s degree in English and creative writing, yet I cannot cross a street without help, struggle with independent living skills, and possess a strong affinity for anything Disney or Hello Kitty. This spike-and-valley development may be atypical for most people, but it is a totally typical way for an autistic person to develop and sets the stage in each individual for the culture we build together."

4) Honor sensory needs. Many autistic people's senses are more finely tuned than a non-autistic person's hearing, smell, or sense of touch. Noises that don't bother you if you aren't autistic may be unbearable to someone who is. Other people's perfume may feel like chemical warfare. Being in a crowd may feel like drowning. These perceptions are very real, so consider that if you refuse to acknowledge or accommodate autistic sensory needs, you are essentially torturing a fellow human being.

5) Honor executive functioning difficulties. Autistic people often struggle with organization, sequencing, problem solving, and other executive function (EF) skills. So do everything you can to support your autistic loved ones in this area, by helping to develop supports such as checklists or visual schedules. Further EF accommodations can include eliminating simple barriers in the home, like installing towel hooks instead of towel bars, using open laundry bins instead of ones with lids, or storing dishes in a lower cabinet instead of an upper one. Small changes like these can make big differences in the happiness and functioning abilities of people you care about (or, again, your own self).

6) Honor anxiety. The world is not usually a friendly or accommodating place for autistic people, given some of the topics mentioned above, so it's no wonder that anxiety is such a common co-occurring diagnosis for autistic people. It's also one that needs to be taken seriously. Please do what you can to respect an autistic person's verbal declarations or behavioral indications of anxiety; your consideration can make the difference between an autistic person getting through their day, or having a meltdown. Which brings us to the next topic:

7) Honor routine. Autistic people like my son can find comfort in routine, whether it's visiting the same restaurant as a family every Saturday, or using the same series of steps and scripted phrases to get dressed in the morning. As far as many autistic people are concerned, anything different is bad, and a source of stress. Especially surprises.

If things need to change, do what you can to make the transition easier, in the fashion that works best for the autistic person in question. Would a custom "social" story about the transition help? Or would they prefer to ask you, every few minutes, to repeat the same scripted details about the upcoming change? Again, do what you can to accommodate, especially if that autistic someone is dependent on you.

8) Honor autistic role models. There are so many autistic people online being proud and fearless. Learn from them, bow to them. A very incomplete and haphazard list includes Ruti Regan, Mel Baggs, Ido Kedar, Morénike Oniawu, Paula C. Durbin-Westby, M. Kelter, Julia Bascom, Emma Zurcher-Long, Lynne Soraya, Lydia Brown, Judy Endow, Amy Sequenzia. John Elder Robison, Max Sparrow, and Emily Paige Ballou.

9) Honor the undiagnosed autistic people you already know. We know that autistic people have always been here, that most of the increase in autism rates has to do with changing diagnostic criteria to include more people, and that women especially often go undiagnosed. This means that the current CDC autism estimate of 1 in 68 people is probably too low. This means you likely have more autistic people in your life than you officially know you do.

So try to show respect and kindness rather than irritation towards people who, for example, you'd otherwise think are one-upping you when you tell them about your experiences and they reciprocate by telling you about their own related experiences—as such reciprocation is a very autistic way to empathize. Smile and nod and try to honestly listen to the little girl who wants to tell you about every possible gem category and the subtle differences between them. Kindness and courtesy rarely cause harm, after all.

10) Honor autistic people as their own unique selves. Do not disrespect them by trying to view them as flawed, or potential, non-autistic people. Do not be surprised by or resentful of autistic adults who have gained more skills than your autistic child currently possesses. Do not talk about autistic people having less mature minds in more mature bodies. Do not try to cajole them into doing things that cause them distress, like going to loud parties or talking about whether there is an autism epidemic (again, autistic people have always been part of human society). Just show some respect by trying not to impose your non-autistic sensibilities onto them.

Because autistic people are, again, individuals. Treat them that way. Accept that some may possess a wicked sense of humor, but totally miss others’ reciprocated (or retaliated) humor or sarcasm. Accept that some function best with noise-canceling headphones at school and work. Accept that some autistic people loathe hugs. Accept that some autistic people crave hugs. Accept that some autistic people may enjoy skipping as a form of locomotion whenever possible. Accept that your preferences may surprise them, and their preferences may surprise you.

Accept. Accept. Accept.

To Siri, With So Much Disappointment

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.

Others, including autistic writer Max Sparrow, have written extensively about why To Siri With Love is flawed, and you should read what they have to say. Because I'm not alone in noticing that one of the primary problems with the book is that, when it talks about autism, it recycles outdated and stigmatizing cliches. Despite the two years since the award-winning neurodiversity explainer and history NeuroTribes was published, and despite Newman being a journalist, To Siri features common misconceptions, like insisting all autistic people lack theory of mind (long-established research clarifies that the issue is actually one of “double empathy,” in which negative assumptions from non-autistic people about autistic people are most of the problem).

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.

People like Lydia Brown have already criticized how awful it is for Newman to muse about her son’s sex life, and equate it to a Benny Hill film, as though being autistic somehow turns sex farcical and fictional (she also once again disregards her son's privacy and dignity). I can't help but wonder: If she's so concerned about her son's sexuality, why she doesn’t include helpful information about sex ed for people with developmental disabilities, avoiding learned compliance, or the increased rates of sexual abuse of people with disabilities? Anyone who has ever read The World According to Garp is aware that that sexual abuse of people with disabilities is not limited to women.

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.

Realistic Evaluations of (My) Parental Stress Levels

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.)

#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:

.@judithn111, how can you say you’re “autism-very-friendly” while writing off the possibility that your son is capable of loving romantic relationships?

— Sara Luterman (@slooterman) November 30, 2017

[cn: ableism, eugenics, mental-age-ism]
I don't know what's worse.
- mom saying her nearly adult teenager is mentally a child
- mom thinking that no woman will ever love him
- or mom using that to argue eugenics (forced sterilization) on him

Trashfire she is. :(#BoycottToSiri https://t.co/MvulMYd1qP

— Ariane ⚧ (@nahratzah) November 30, 2017

Autistic people were once put in "idiot" asylums for the feebleminded, sterilized on basis of burden and invented danger to society. Judith wonders if her son even thinks. Same justifications used century ago. How was this even published? #ToSiriWithLove

— Gregory Love (@grlo1114) November 30, 2017

Here's why #actuallyautistic folk and our allies should boycott Judith Newman's, To Siri With Love, which is written by an ~autism mommy~ of the highest order and is questionable af.

A thread, 'cause what the everloving heck.#autistic #autism #ToSiriWithLove #BoycottToSiri pic.twitter.com/CTirdF9gaL

— Amythest (@amythestschaber) November 28, 2017

Mom writes book about Autistic son, says he will be forever a child, and promotes eugenics - USING HER AUTISTIC SON! #BoycottToSiri https://t.co/6aDtkdNwk0

— Amy Sequenzia (@AmySequenzia) November 29, 2017

That's it for chp three...

This book is WORSE than I expected. Please support autistic authors instead of sending money this writer's way.

— Kaelan Rhy 📝54,315 (@KaelanRhy) December 1, 2017

I'm sad because half of my feed is autistic and other neurodivergent writers who can't find agents/publishers for their #ownvoicers books and the other half is quotes from #ToSiriWithLove that dehumanise autistic people. #BoycottToSiri and support neurodivergent writers

— Brooke Winters 🇪🇺 (@brookewinters33) December 1, 2017

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.