My Comment to the October 2022 Interagency Autism Coordinating Committee Meeting

If you're frustrated about the state of government support for autistic people and their families in the United States, one of the most straightforward ways you can speak up about autism policy is to submit a comment to public IACC meetings. What is the IACC, you ask? From their website:
The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee that coordinates Federal efforts and provides advice to the Secretary of Health and Human Services on issues related to autism spectrum disorder (ASD). Through its inclusion of both Federal and public members, the IACC helps to ensure that a wide range of ideas and perspectives are represented and discussed in a public forum. The committee reconvened in July 2021 to begin a new session under the Autism CARES Act of 2019.
Every single comment submitted goes on the public record, which can sometimes be ...not a plus because people can and do submit conspiracy theories as well as expletive-filled rants, meaning that the official versions of said comments end up being a series of black redacted bars. But the IACC really does appreciate and take notice of legitimate comments.

I try to submit comments only sporadically because I don't want to be perceived as a gadfly, but it's hard to hold back when the reality is that people either openly (or cluelessly, or misguidedly) working against better futures for autistic people like my son submit the most comments. I did submit a comment for last month's meeting, and the IACC kindly invited me to speak on the record during the meeting (the video and transcript are forthcoming). Here is what I said, much of which I have said before in other arenas but which bears repeating.


I am writing to you both as the parent of an autistic adult who requires full-time support and supervision, and as the senior editor of Thinking Person's Guide to Autism, which is an autism research and advocacy community with large and active Facebook and Twitter communities—which I moderate. This means that, all day long, I hear from parents, autistic people, professionals, and researchers about their priorities for autistic people to live safe, healthy, fulfilled lives. 

I also participate in several initiatives for best health care practices for patients with neurodevelopment disabilities, in which participants discuss many of the same themes but in more formal ways. The lists of concerns are endless, but priorities include:

  • Research on how autistic people can process medications differently than non-autistics. The medical community seems largely unaware that autistic people often have paradoxical or atypical reactions to commonly prescribed medications, such as not reacting to—or being overstimulated by—drugs classified as sedatives. In the worst case scenarios, this lack of knowledge can be (and has been) fatal. 
  • Research on why sedation for medical care is an access need. Many autistic people, whether they can communicate effectively in medical scenarios or not, require partial or full sedation to be able to tolerate medical procedures such dental exams and MRIs. Yet this type of sedation is rarely covered by insurance. Research demonstrating the necessity of sedation in these circumstances would not only lead to more access to health care but to better health care outcomes.
  • Research on competing sensory access needs. Autistic people don't only have sensory systems that differ from non-autistic people, they often have sensory systems that differ from each other. We need research that demonstrates, for example, why it is not sufficient to hand every student with an autism diagnosis a set of noise-canceling headphones (many autistic kids can't tolerate wearing them, others can still hear disturbing noises when wearing non-professional-grade versions), and it is certainly not appropriate to put autistic people together in classrooms, or other settings, without fully evaluating and accommodating their individualized sensory profiles.
  • Research on improving access to autism diagnoses across age, gender, class, and racial gaps. Too many autistic people are being misdiagnosed, categorized as having "behavioral disorders," resorting to self-diagnosis, or being overlooked altogether. They are suffering as a result, leading to avoidable anxiety, depression, isolation, poverty, and suicidality.
  • Research on the transition from the school system to the adult world, especially for autistic people with the highest support needs. "The Cliff" is a real thing for students like my son, who is currently facing a complete lack of programs that can enroll an autistic adult with full-time support needs. Even those programs that are *in*appropriate for him currently have interminable wait lists. To compound matters, even though we are fortunate to have funding for home aides, there is currently a shortage of such workers, to the point where my son does not have the staffing he needs and deserves (and has been allocated). If families like ours, which have the language, class, and cognitive advantages that make it easier to navigate often labyrinthine and impenetrable public disability supports systems like Regional Center respite, SSI, and IHSS, still can't find any support, then families that don't have our advantages are certainly worse off.

A final note: I am gladdened about the IACC's current membership, inclusive as it is not only of autistic adults, but of autistics who use AAC to communicate, who have intellectual disability, who are parents, who have family members with intensive support needs similar to my own son, and/or who are people of color. It is hard to have faith in an advisory body that does not resemble the population for whom it is responsible, and it will be useful to see future iterations of the IACC reflect the autism communities to an even greater degree. Also, as someone whose autistic son has limited language, it is important for me to know that autistic IACC members—people who understand my son's life experience in ways that I as a non-autistic person never can—are looking out for his interests as a human being.


If you want to start submitting comments but need reminders about the submission periods, you can sign up for email notifications at the bottom of the IACC meetings page. I really hope you start participating!

My son, hiking on a blue sky cloudy day.
My son, hiking on a blue sky cloudy day.


Nāscendī (Of Being Born) | Joe on Trans Rights

[video: Joe, a white teen with curly brown hair and glasses,
sitting on a stool in an art gallery, addressing an audience.]

This page has been around longer than my youngest child—who is now in college and doing their own advocacy, for instance giving public talks with Listen For a Change on why gender-affirming medical care saves lives and improves mental health

If you have people in your life who don't understand why it's important to support trans kids, maybe my kid's story about their medical transition will help. And please donate to Listen For A Change and TransLifeline if you can.

Joe: I don't remember when I first knew that I was transgender. I feel like that's a misconception that a lot of people have. There was no big moment where a switch flipped or fireworks went off, and I just knew. That's maybe true for some people but it definitely wasn't true for me. One of the earliest memories [00:00:20] I have of anything concerning my gender was when I was around six years old and I watched the movie Victor/Victoria with my mother and my godfather.

As I watched Julie Andrews and Robert Preston play gender like a game of cards on the screen, I felt something inside of me that I couldn't really describe, or something that I really couldn't remember  because I was six. Eventually, when I was around 11, I thought a little bit more about it, and eventually, when I was 13, I came out to my family and to my friends. I am extremely lucky to have a family that accepts me totally and unconditionally, but not everyone I knew had that family.

I joined a support group for transgender youth for kids like me. I remember sitting in that support group and watching and hearing all of these kids who were just like me describe how their families treated them like simultaneous murder victims and murderers, like they had been destroyed and replaced with something new, but they were also the destroyer. I remember thinking that there was really nothing that separated me from these kids except for just a pure game of luck.

I had lucked into the right family. I had lucked into people who loved me. For a while, I felt so accepted and uplifted by everyone around me that I didn't really experience any dysphoria, which is the pain caused by the disconnect between one's inner and outer self. That didn't last forever. As my body continued to develop, I grew into a pubescent child. I was unfortunately cursed with Triple Ds at 14, a round feminine face, and a voice that (at least I felt) could shatter champagne flutes.

My dysphoria became worse. I begged my parents to let me go on hormones to let me get surgery, but of course, they were skeptical because those were big changes. I knew that because I knew that I needed big changes to happen to my body in order to feel happy being myself. I knew that if I didn't get these changes, these hormones, and these surgeries to make my body into a home that I feel comfortable in, that I probably was not going to make it to 18. 

Living in a body every day, waking up, and knowing that the body I was in felt like it barely belonged to me for the rest of my life felt like something absolutely intolerable. After fights in the car, lamenting to my support groups, and just working through the process of getting hormones, that was around half of it but the other half was the waiting; waiting between appointments, between re-schedulings, between insurance coverage, and letters.

It felt like my entire happiness and my entire future was being held on a string that could snap at any moment and my entire future would just come crashing to the floor. Feeling like I didn't know whether my happiness would come in weeks or months or even years was far worse than knowing that it would never happen. Eventually, on March 13th, 2020, I sat on my kitchen stool with my mother and my father as a nurse on my mom's iPad instructed me through injecting my first shot of testosterone into my body.

I don't know what I expected to happen. I think I expected to maybe go through like a Popeye sort of thing where I just immediately grew into a strong independent man. Of course, I didn't like spinach that much, so that didn't really happen. Over time, my body would undergo the changes of an second, male, puberty. (I wasn't lucky enough to have gotten puberty blockers earlier in pubescence like some other people I know.)

The hormones did a full number on me; they changed my face, they changed my voice, they changed my body, and my skin. Eventually, I got to the point where I felt a lot more comfortable in my skin, especially since I was lucky enough to be able to undergo this entire process completely inside [during the COVID Pandemic]. Eventually, the world opened up again and I was forced to go outside and know that no matter how hard I tried, whenever people saw me, they would only think of the gender that I was forced into and not who I knew that I was on the inside.

The dysphoria was even a little bit worsened by the fact that most of my body was so masculine, but my chest was … a little bit generous. There was a dichotomy between those things that I felt made it somehow even worse. This was probably when I was at my lowest point, which is odd considering I had gotten what I viewed as basically halfway there. I had gotten the hormones, but I knew what I needed.

I needed a double mastectomy, which is colloquially called top surgery. It took considerably less deliberation with my parents. I think that as soon as they had gotten over the bump of me medically transitioning in general, they were more open to the idea of me getting things like hormones and surgery. There was a lot of insurance, mess, and surgery, surgeon switching that I'm not gonna get into, but eventually, we decided that my top surgery was going to take place in late August of 2021.

I was really excited for it. This was basically going to be the next step in the entire rest of my life. Also, I knew in my heart somehow that it wasn't going to happen; something was going to come up, something was going to get rescheduled, something was going to get canceled. Then I remember just feeling like this was going to be my forever, that it was never going to stop. The pain was never going to end, and I was just going to be stuck in this weird Frankenbody for the rest of my life and nobody would ever know who I truly was on the inside.

I felt like I wasn't going through these transitions to become necessarily a man. I feel removed from all gender markers in total. I'm going through these transitions to, again, make my body into a home that I feel comfortable living in and that I love living in. That body is generally perceived by the rest of the world as masculine or as a man. When people did not treat me as masculine, when they would misgender me or use the wrong pronouns, it just felt like a stab directly to my heart because I knew that they weren't seeing the real me. They were seeing their preconceptions of me that they were projecting.

I remember one day I woke up to my mom urgently shaking me awake, saying that my surgeon had had a cancellation and that I could get my surgery earlier. I remember racing down to her computer and scheduling the new surgery as soon as possible. My heart beating a hundred miles a minute the entire time. Then the confirmation popped up on the screen that my surgery, instead of being in late August, was going to be two weeks from that day. Just so much of the time that I had expected to wait just got removed within that fraction of a second.

I still had that feeling that it wasn't going to happen, that things weren't going to work out. I remember any time my mom got a text message or a phone call or looked at her phone during those two weeks, I felt myself tense up and I was certain, this is it. It's getting canceled. It's getting postponed. It's just not going to happen. All the way up until I felt myself going under the anesthetic, laying on that surgery bed in San Mateo, I was convinced that it was not going to happen—but it did happen.

As you can expect from major surgery, the weeks after were mostly composed of lying in my bed and doing pretty much nothing. In another instance, it wasn't so immediate, the change didn't feel so immediate, mainly because they cut two big lines across your chest, and of course, they sever a lot of important nerves. My chest was really numb for like six months after surgery. I only regained full sensation recently. Not only that, but they have you put on this compression garment that keeps everything in place and keeps your body from wiggling in ways that it shouldn't. It didn't feel like an amputation. It didn't feel like a really instantaneous change. Again, it was really gradual. It is sort of amorphous.

One moment, though, that I knew or felt that I had really made it was when I had all of my friends over to my house to swim. And all of my friends are also transgender. I knew that they would feel happy for me, and I knew that they would also probably be a little jealous, but whatever, that's on them. I had all my friends over and I swam without my shirt off and I felt the sunshine on my skin. It was really great. It was a really beautiful moment.

I woke up the next day and it did not occur to me that I needed to put sunscreen on. My entire body, just front, and back, just lobster red. I still felt so happy in that moment and I still feel so happy today because it wasn't instant, but I could still feel everything just improving. I felt that things were slowly getting easier, I didn't have to walk like this upstairs anymore. [crosses arms across chest] I could run, I could lie facedown on my bed, I didn't have to put on a bra or a chest binder before I left the house.

Overall, everything was so much easier. That is the feeling that I associate with my transition. It's not suffering, it's not agony. It's joy and comfort and ease. That is something that I feel was really important. It's just me being comfortable being myself. Not only did I feel how much more comfortable and how much happier I was, but everyone around me could feel it too. All my friends said that I was so much happier, my parents knew that I was so much happier. My therapist knew that I was so much happier because I've stopped seeing her.


Every aspect of my life improved. My grades got better. I was just so happier. I felt more alive and more connected to the world at large. It was a really holistic improvement. Just everything was better and everything was easier. I stopped taking my antidepressants because I didn't need them anymore. For the first time I felt actually excited for my future. Not even like the big far off future. I felt excited to wake up the next day, and exist and live in my own body. When I was given the trust and the tools to grow into who I knew that I was meant to be, everything in my life grew along side it. Thank you.



My Public Comment to the October 2021 IACC Meeting

Selfie of me on a redwood trail  Leo is visible, blurrily, behind me.
Hiking—Always Hiking
[image: Selfie of me on a redwood trail 
Leo is visible, blurrily, behind me.]
I gave a live video public comment (at 1:19:49) at yesterday's IACC meeting, about the need for autism research and resources to serve existing autistic people of all abilities. The comment limit was three minutes, so this is the condensed version of my howling fury over how research is primarily currently sunk into causation and treatment, not quality of life or communication. Will post the video when it becomes available. 


My name is Shannon Rosa. I am the mother of a twenty-year-old high support autistic young man, and senior editor of the autism information and advocacy community Thinking Person's Guide to Autism

My son is a thinking, feeling human being, like you. He deserves a good life. My husband and I love him dearly, enjoy his company, and do our best to help him feel happy, healthy, and safe. 

However, it is challenging for families like ours to give our autistic loved ones those lives they deserve, as current public and private autism efforts focus disproportionately on theoretical unborn autistic people, rather than investing in best support practices for existing autistic people like my son. Per the IACC’s own analyses, autism research funding is primarily funneled into to risk factors and biology, with less than 10% prioritizing lifespan issues and services. I do not understand how this is considered acceptable.

My son and the wider autistic community deserve to be living their best lives, now. They deserve family, caregivers, and therapists who understand how to help autistic people thrive, now. They deserve access to well-trained and -paid educators and support workers, now. They deserve medical professionals versed in best practices for treating autistic people, now. In one year, my son and his peers will age out of the school system—yet no existing federal, state, or local framework exists to transition to or support them in fulfilling and dignified lives as adults. We need those frameworks, now.

Even so, my family is lucky; we have decent autism services in our area, and we have the language, know-how, and socioeconomic advantages needed to access those services. At the same time, we all know that less-advantaged autistic people and their families are missing out on services—partially or entirely—as are autistic people perceived as lower-support than my son, yet who still require significant accommodations. This is unconscionable.

Finally, we need to formally recognize that autism issues must have autistic guidance. My son’s quality of life improved dramatically once we had access to autistic insights on supporting autistic people, and every autistic child and adult in this country deserve the same opportunities and benefits. I applaud the IACC for seating more autistic members, and hope autistic priorities will have a proportional influence on the IACC’s outlook and directions.

Thank you for listening.

Shannon Des Roches Rosa


2020: The Year of Hiking

A scene from today's hike at Skyline Ridge
[image: Young white man with short brown hair,
from behind, hiking a wide trail under tall oaks.]
2020 was, appropriately enough, the year in which my middle child turned 20. And despite the year's significant and unceasing horrors, which are being catalogued everywhere and which I do not need to list for you, I enjoyed the extra time I got to spend with my family, and specifically with that son. My crew and I are incredibly lucky, and I remain gratefully, painfully aware of that good fortune.

Because it's what we enjoy and due to a lack of other options, 2020 was, for me, a year of near-daily hiking. Most of it was with my 19- and then 20-year-old, some of it was with my eldest, some with my husband, some with my youngest, some with a combination thereof. It was all beautiful. We could hike a different trail each day in this picturesque, varied Bay Area, and never repeat ourselves. 

Yet many of our cherished trails were destroyed or badly marred in 2020. Sometimes I felt like we cursed these places just by visiting them during this upside-down year, even though I know this mindset is both egotistical and silly. But consider that our redwood pilgrimage site Big Basin State Park burned down the very day after we hiked it. Our favorite and frequented short coastal hike, Cascade Creek, burned black in that same CZU complex fire, which cost so many Santa Cruz Mountains residents their homes and livelihoods. The Oat Hill Mine Trail, with its dizzying views of Napa Valley, and which my husband and I hiked just before lockdown, was partially burned in this summer's Glass fire and is closed until further notice. South San Francisco's Sign Hill Park was torched by teen arsonists within a month of our visit. And, for variety's sake, human remains were found in San Bruno Mountain park, shortly after we'd hiked there. Perhaps you can understand my unease.

Hiking also helps me grapple with one of this year's most devastating losses, the death of Mel Baggs. Mel's compassionate but unyielding advocacy on behalf of disabled people like (and also unlike) Leo can't be replaced—but we can keep spreading those teachings, like what self-advocacy actually means:

"Self-advocacy doesn't mean staff get to pat us on the head, use the right buzzwords, tell us what wonderful little self-advocates we are, and then chastise us or put us on a behavior program when we get angry at them about their controlling behavior."

As Leo and I continue to hike through the redwoods Mel loved, and as my son's laughter rings through the trees, as my heart swells because who couldn't be happy in the presence of such joy—I hope that by doing our best to give Leo a good life and let him know how much he is adored, we are doing a small part to live Mel's legacy. Though we didn't do much else this year, I consider loving and being loved a win.

Bite me, 2020.  


Autism versus Face Masks and Maskholes

image: Two photos: Left: Iz as a baby wearing overall made from marbled green fabric; right: Iz right now wearing a face mask made out of the very same fabric.
Baby Iz versus Pandemic Iz
[image: Two photos: Left: Iz as a baby wearing overall made from marbled
green fabric; right: Iz right now wearing a face mask of the very same fabric.]

We're several months into mandatory pandemic face masking, and my son still can't wear a mask. It's not for lack of trying; he knows he's supposed to wear one, and we talk about how they help protect people from COVID-19 and why it is a deadly and contagious virus. When I put my mask on, he puts his on, too. And then, because the feeling of a mask on his face is intolerable for autistic sensory reasons, he takes that mask right off again. I don't know if he'll ever be able wear a mask for more than sixty seconds.

And this is why I am highly irritated by parents of autistic kids saying that “if my kids can do it,” then other people can’t complain about wearing masks: It sets a dangerously ableist precedent for forced mask compliance. And for those arguing, “He's talking about denialist maskholes, not making other autistic and disabled people to wear masks,” you don’t understand how compliance contagion works in the autism parenting sphere, or how stories like this get weaponized by ABA providers and others who work with people like my son. This example will be used to force autistic people to wear masks. And I'm pissed about it.

And yes, of course, some autistic people can wear masks given practice and patience. But others will never be able to, for a variety of reasons (some of which I wrote about in the Washington Post a couple of months ago). Still other autistic people totally get why they should wear a mask, while simultaneously struggling with wearing one:
If you are responsible for supplying an autistic person's masks, then it's a good idea to try them on yourself, first, and try to determine if they are scratchy, or rough, or pull in weird ways. I personally can tolerate masks that go over my ears, but dislike those that cinch my skull. Gaiters may work for some, but they are also more permeable than a face mask and so reduce protection. Other autistic folks find that mask brackets help reduce a mask's sensory assault. I tend to go with the standard blue disposable medical masks: They go over our ears, the interior is soft, and Leo can put them on himself. But the ear straps do break easily, so I always have a backup mask with me just in case.
Another mask stressor for us is that our county now fines people for violating pandemic mask guidelines. While California state law gives people with I/DD an exemption from mask wearingIt's usually clear that Leo's not wearing a mask because he can't, as when we're in public I have one on though he doesn't. But I still worry about law enforcement making first-glance assumptions, and that leading to an encounter in which my son's behavior might be misinterpreted. 

I am also upset about jerks using fake ADA cards to get out of wearing masks: It's such a callow, ableist dodge, as well as total bullshit, and here's why: 
The U.S. Department of Justice says"The ADA does not provide a blanket exemption to people with disabilities from complying with legitimate safety requirements necessary for safe operations." This means that while the ADA does say disabled people need to be “reasonably accommodated” when working with employers, public businesses and the government, it does NOT allow mask exemptions "without replacing it with another measure in line with public health requirements.No one gets to go maskless if doing so endangers themselves or others.
And last in my list of mask grievances: maskless joggers who run right through other people's social distancing bubbles. Doing so is a blatant dick move as well as a health code violation. It shouldn't matter that taking the time to safely distance interrupts an exerciser's rhythm or heart rate or whatever else they're tracking. This is a pandemic, we're all having to make changes for the greater good. Pull up your mask for five seconds, run around the other people if possible, or stop for five seconds until you can pass the other person safely. FFS.
We're handling Leo's inability to wear a mask by diligent handwashing and application of hand sanitizer, and by avoiding any spaces in which safe social distancing isn't possible. To be very clear, safe social distancing means:
  1. At least six feet between us and anyone else
  2. Being outdoors, away from enclosed spaces with shared or recirculated air
  3. Ideally, a good breeze 
Those last two are important because we're learning that good ventilation may be as crucial as hygiene in preventing COVID-19 transmission. And for us, this mean we are taking lots and lots and lots and lots of hikes in remote local areas, in open, breezy spaces with wide paths. (Shout out to Peninsula Open Space, whose maps now highlight trails wider than six feet in bright green.) With the exception of essential medical appointments—in which all staff take maximum precautions—Leo doesn't go indoors except in his own home. 

Leo and his dad, seen from behind, walking down a trail to a cove.
[image: Leo and his dad, seen from behind, walking down a trail to a cove.]

I’m relieved we have safety measures besides masks, because it’s crucial to keep my son healthy. Research indicates that people like Leo who have intellectual and developmental disabilities (I/DD) are four times more likely to get COVID-19, and twice as likely die from it, which is scary AF.

I am also terrified at the thought of my son and people who share his disabilities being hospitalized under pandemic conditions. Leo struggles with hospital environments, even in ideal times. He needs full time, 1:1 support, and while our state of California allows people with I/DD to have support people stay in the hospital with them, this isn't yet universal. And even if one of us were to stay with him, pandemic safeguards and protocols would make that experience exponentially more stressful and fraught than usual.
And even though Federal civil rights prohibit medical rationing and discrimination against people with disabilities, if hard choices need to be made about who gets that ventilator, I worry that my son may be denied care because of negative stereotypes about disabled people's quality of life, as recently happened with the death of Michael Hickson. Not being able to wear a mask is a minor worry, by contrast.

I am bummed that masking has become a fraught issue with bombast on both sides: Those who refuse to wear masks for "personal freedom" or "I don't believe in science" reasons, and then people who emblazon their cars with "Mask It or Casket" slogans, and insist that anyone who doesn't wear a mask is a selfish asshole or doesn't understand how masks protect people from the coronavirus. 
So, my plea: If you can wear a mask, please please PLEASE do. If you can't, please protect yourself by social distancing and hand-washing. And if you see a dude not wearing a mask and he's not close enough to imperil you, leave him alone. You might be looking at my son.


On Always Always Always Learning

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.
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. 


Pandemic Greetings from Our Backyard

We are fortunate in that we can all learn and work from home during the pandemic lockdown, now on week…10?  Maybe? Time has lost any meaning without our usual school, work, and commute structures, which is both good and bad. My only complaint is the difficulty of carving out any alone time, which as an introvert is helpful for my mental health and energy levels/ability to not yell at people who aren't doing anything wrong. But that is a very minor issue right now. Very minor.

Still, yesterday was a beautiful spring day, so while the kids were engaged in the house but within earshot, I snuck out to the yard for some blissful hammock time. 

[image: My stubby feet and legs in a rainbow hammock.
Flowering jacaranda trees and oaks are in the background.]
Thing is, whatever I do, a certain someone also likes to do (this makes it hard for him when we go on our neighborhood hikes, because I wear a face make, but he can't bear having his nose and mouth covered). I did get in about five minutes of bliss before being politely asked to surrender my spot.

[image: Leo chilling in the same hammock as previous photo.] 
There's just so much wrong in the world right now, most of which I am processing on Thinking Person's Guide to Autism social media. Because of all the suckage, I'm hoping these two peaceful scenes will be as soothing to you as they were for us. And I hope you are doing OK, in your context.


Vanilla Cake For a Nineteen-Year-Old Dude

[image: Distance view of Leo about to jump into a foam pit,
seen through black safety netting.]
Someone turned nineteen very recently. Someone's mother remains in denial.

We celebrated that someone's birthday according to their specific wishes for pancakes, a typically forbidden strawberry milkshake, and a trampoline-based birthday party with friends. It was a Very Good Day, going by the Very Big Smile metric.

The resident someone was also clear that they wanted a vanilla cake for when cake-and-candle time rolled around. I'm perfectly happy with cake mix confections, but didn't have time to go to the store and get the boxed stuff. I experienced a rare Joy of Cooking fail in looking for alternatives—but the Internet provided, as it often does, and served up a recipe that was relatively quick and easy, and also worked with ingredients we had on hand (with a little quick thinking). Plus everyone really liked the cake in an "I don't usually like buttercream frosting" kind of way, so I'm sharing it with you.


Modifed from marshasbakingaddiction.com/perfect-vanilla-sheet-cake


  • 3 cups cake flour
  • 1 tsp baking powder
  • 1 tsp baking soda
  • 1/2 tsp salt
  • 4 large room temperature eggs
  • 1 1/2 cups sugar
  • 2 tsp vanilla extract
  • 3/4 cup vegetable oil
  • 1 cup impromptu buttermilk (mix 1/2 cup sour cream with 1/2 cup water)


  • 4 cups powdered sugar
  • 1 cup Kerrygold butter, softened
  • 2 - 3 tbsp whole cream
  • 1 tsp vanilla extract


  • Preheat oven to 350F
  • Grease a 13x9-inch pan, and set aside. (I used the Costco version of spray oil)
  • In a medium bowl, whisk together flour, baking powder, baking soda, and salt. Set aside.
  • In a stand mixer, beat the eggs on low speed just until blended. Add the sugar, and blend until combined. Add the vanilla extract and vegetable oil, and blend until combined. Gradually mix in the dry ingredients, alternating with the faux-buttermilk.
  • Pour the batter into the prepared pan, and spread out evenly. Bake for 30 - 35 minutes, or until a toothpick poked deep into the middle comes out clean. 
  • Allow to cool completely in the pan on a wire rack before frosting, or else your frosting will just melt and will also be full of crumbs.

  • Beat together the butter and icing sugar until light and fluffy (I used a stand mixer).
  • Beat in the whole cream and vanilla extract until smooth and spreadable. 
  • Spread the frosting over the top of the cooled cake, decorate if you wish, then slice and serve.


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.


Visiting Zion National Park While Autistic

Because I am very smart, it only took me ten years to realize that Zion National Park is a mere three-hour drive from Las Vegas, where we often stay with family. For us, that's day-trippable. I wasn't sure if Zion would be an ideal place for our team, but as last week was Leo's Spring Break, we were looking for new adventures, and our friend and fellow road-tripper Dr. Deb Karhson was game, we decided to see if Zion was our kind of place.

Oh yes, it was.

First of all, we are all about Transportation Days. If we can spend a day riding buses, trains, subways, ferries, boats, trams, and/or cable cars, that is a day in which everybody wins. And Utah's town of Springfield, AKA the gateway to Zion NP, has a clean, efficient, free shuttle bus service. Yes! We won! (Parking in Springfield was not free, but it was not exorbitant either.)

[image: Deb Karhson, me, and Leo riding the free shuttle bus
from the town of Springfield to the Zion park entrance.]
Another reason we were heading to Zion is that it is in fact a National Park. And people with disabilities can get life-long free Access Passes to National Parks. And I thought Leo should have an Access Pass. So I brought all his documentation—birth certificate, passport, diagnosis paperwork, most recent IEP, etc., to prove that yes in fact, our dude is who he says he is and yes, he is disabled.

Turns out the ranger believed Leo without any of that, and just needed him to sign his name (and waited without comment or prompting during that process, which for our dude takes as long as it takes). OK then! Now Leo (and anyone who comes with Leo) can get into any national park, and can even get the car that Leo rides in, into those national parks. I think the Access Pass is an excellent program and I am grateful for it.

We then headed to the next part of our excellent day, the Zion NP free shuttle, which takes visitors to nine different parts of the canyon, with on/off privileges at every stop. Except, d'oh:

[image: Leo next to a very long line of people waiting to board the
Zion National Park free shuttle bus.]
We were there on the Friday before Easter Sunday, which turned out to be a Really Busy Day. The rangers said they had Summer attendance but Spring staffing and shuttles, so we ended up having to wait for 30 minutes to board the bus. Thankfully, waiting for a bus is a perfectly acceptable way to spend one's time, according to the teenager in our group. Whew! 

We then rode up and down the canyon, possibly more than once. We got off the bus at Zion Lodge and poked around a bit, but we'll need to go back again to get our usual hiking on—the crowds made the trails inaccessible to our party, for various sensory reasons. The crowds also made for waits at many of the shuttle stops, which could have been an issue if we had had a crisis and needed to board right away, as the park has no priority boarding policy for people who have a hard time with lines. I look forward to heading back on a less-bustling day.

But, damn, Zion was so beautiful. The temperature was warm but not intolerable, flowers were blooming everywhere, and the skies were as blue as any I've seen. I did not even try to capture that beauty, as it is staggering on a scale incomprehensible to my puny camera phone. Let's just say that there's a reason there are windows in ceilings of the buses. You should see Zion yourself if you can, or watch a dedicated video.

[image: Leo from behind, looking down the Virgin river, from a bridge.]
Also note that there were lots of places to rest and chill, even with the crowds. Benches and lawns and more. This is important for our crew, which requires downtime. Also important: Water fountains and spouts with tasty, clean Zion spring water everywhere. Don't forget to bring your reusable water bottle!
[image: Leo and me lounging on the lawn in front of the Zion lodge.]
And finally, we were glad to have Deb along with us. I think sometimes Leo gets bored of me, as teenage boys tend to do with their mothers, plus Deb is the least boring person on earth and Leo loves her (as do I). Also Deb says she misses her brother, who lives in another state, and who is a lot like Leo. Then there's that Leo's dad doesn't like the two of us traveling by ourselves, but there aren't a lot of people who think traveling with us for a few days is a vacation. So, more gratitude on my part. Thanks, Deb!

[image: Leo and Deb on the grass at Zion Lodge, seen in
profile. Deb is cupping Leo's cheeks and he is smiling
at her.]
If you or your family member are autistic and/or disabled, and you've been to Zion, I'd be interested to hear about your experience. For now, I can report that we had a wonderful time, and I am raring to return.