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

Ezra: A Great Autistic Kid in a Well-Meaning Movie

I’m pleased that April has been reclaimed as Autism Acceptance Month, after years of superficial “awareness” campaigns. Even the White House made an autism acceptance proclamation this year! And yet, we are still only inching towards real world autism understanding. Or so I observed recently at a cast and crew screening of the autism-centric movie Ezra. 

Please know: Ezra is a beautifully directed and acted film, with witty, wry dialogue and many of my favorite players—including Matilda Lawler from Station Eleven, Whoopi Goldberg who played Guinan in Star Trek: TNG, and Rainn Wilson AKA Harry Mudd in Star Trek: Discovery. 

And it was clear from the post-film Q & A that the team behind the film was 100% committed to the mission as they understood it: Writer Tony Spiridakis has an autistic son; director Tony Goldwyn is the writer’s longtime BFF and made the movie happen; Robert De Niro, who played Ezra’s grandfather Stan, has an autistic son; and William Fitzgerald, the remarkable debut actor who played Ezra, is actually autistic. Bobby Cannavale, who plays Ezra's dad Max, got visibly emotional while discussing what his role meant to him. Plus Associate producer Alex Plank, who is autistic and who was not at the screening, oversaw on-set sensory accessibility. 

There was also obvious affection between the cast and crew at the Q & A, especially between Fitzgerald and De Niro, with the younger actor roasting the older, and De Niro fondly reaching over to pat William’s hand (and knowing that doing so would be OK). Though De Niro declined to go into much detail about his own experience as a parent, which I respect for his son’s sake. 

That personal and emotional investment makes it even more painful that the movie stumbles on autism and disability acceptance messaging, and mostly employs a non-autistic lens. Though Ezra's parents obviously love him to bits, they don't really understand him. They are fine with him wearing a dinosaur costume outside the house, and his mom ensures he has plastic cutlery due to sensory sensitivity, yet Ezra’s boundaries are constantly ignored or ridden over—as with his dad forcing him to eat with a metal fork, or trying repeatedly to hug Ezra despite being rebuffed every time. The final scene of Ezra embracing his dad during a crisis seems like pure non-autistic parent wish fulfillment. 

Since the movie was written by a father of an autistic son, it tracks that the movie’s focus is less Ezra than on how his dad's life is affected by having an autistic kid. Max keeps Ezra out inappropriately late at his stand-up comedy gigs in part because he sees his son as a good luck charm. In the movie’s pivotal plot point, Max kidnaps Ezra and takes him on a cross-country road trip to a Jimmy Kimmel Show booking—because Max thinks only he knows what Ezra needs following a series of school and medical crises. This despite Ezra’s mother and Max's ex-wife Jenna (played by Rose Byrne, Cannavale’s real-life spouse) being a loving and attentive primary caregiver, as well as the only person who accommodates and reciprocates affection with Ezra on his own autistic terms. 

 

The most disappointing part of Ezra is its disrespect towards students with higher support needs. When Ezra is expelled from his Hoboken school for leading a Breaking Bad-inspired student rebellion, it is strongly suggested that he go to a “special needs” school instead. But when he and his parents visit that school, we are shown developmentally disabled children—many of color—as evidence that Ezra obviously doesn’t belong there. As the parent of a high-support autistic son and a human, I find using people like my own son as a scare tactic deeply offensive, and I am disheartened that Ezra’s creative team is reinforcing such prejudices. All autistic and disabled students deserve our respect, as well as appropriate and personalized placements. Including Ezra. Including my son.

The movie also bungles the medication discussion. While it is undeniable that medication for autistic and disabled people can get used to sedate rather than help, it is also true that meds are a crucial coping tool for autistic people whose neurology and wiring is not calibrated to tolerate a hostile world and society. Not every autistic person needs medication, but we already have too many parents refusing to “put their kids on drugs” that could help those autistic kids be less anxious and better regulated. Many of these parents see medication as a cop-out, and believe their autistic kids should learn to “deal” instead—a cruel and misinformed take that Ezra unfortunately reinforces. Plus having Max exclaim that he won’t put his kid on a medication for the “clinically insane” is ignorant at best. (I attended the screening with two neurodivergent Gen Z adults, so as to get their takes. After this and the “special needs” school scenes, one of them, who is a moderate support needs autistic, walked out.)

It is not insignificant that the movie implies both Max, Ezra’s father and Stan, his grandfather, have autistic traits. Unfortunately this is portrayed as why both men are divorced, which is kind of the opposite of an autism understanding and acceptance message. But it’s nice to see an acknowledgment of what research has been reinforcing for years—most autism is inherited. There was also not a drop of autism causation nonsense, which was a relief, especially as De Niro has a history of endorsing antivax autism causation pseudoscience (though after seeing him thoughtfully discuss autism and interact with an autistic child IRL, I have to wonder if that advocacy grew from love for his own child combined with misinformation, as I’ve been there myself).

Ezra was made by truly well-meaning folks sincerely trying to make a difference for autistic people. The problem is, they don’t grasp what autism acceptance means from the inside. And even though autistic producer Alex Plank was onboard to advise and guide, my guess is that there was only so much he could do on a movie whose primary creative team lacked lived autistic experience. 

If I wasn’t personally and professionally involved in autism and neurodiversity advocacy, I would probably cheer Ezra on. Aside from its autism messaging, it is sweet and delightfully offbeat, and Fitzgerald is phenomenal in the title role. But I owe it to my own son and his autistic community to note that Ezra doesn't qualify as an autism acceptance film due to its running theme that autistic people need to play by non-autistic rules. I would love to see an autism movie that features non-autistic parents like me learning to adapt our behavior and expectations to accommodate our kids' needs, and come into the autistic world. I would love to see a great kid like Ezra being celebrated and cherished for being himself, not despite what being autistic means for his family.

Promo screen for the movie Ezra at the SVA movie theater.

Hell Yes, Adventure Days!

In Leo's new post-school life, Thursdays are Adventure Days. It's just the two of us, Leo and me, on purpose. We have infinite excursion options where we live, but often end up wandering around San Francisco, enjoying marvels like the entirely free Presdio GO shuttle, views from Mt. Sutro, circumnavigating newly-renamed Heron Lake, and taking an occasional side trip to BreadBelly for kaya buns (me) and citrus lassis (Leo). 

Adventure Days are part of our ongoing pursuit of a Good Life for Leo, which looks very different now that he is an adult who has aged out of school and all the affiliated services and routines. I don't think he's unhappy, but I do think he would prefer to be in another structured program at a place that is not his house. 

Unfortunately his school's adult program was 1:3 student/support ratio and he remains solidly in the 1:1 camp, so he did not qualify to stay on site. And all the local programs I've found are either Behavior-based, sedentary ("potato farms," per a salty friend), or have rejected our hero due to his "behavioral support needs." Which, f— them. (Also I truly worry about the other Leos dealing with crappy or absent support options.)

No good day programs means Leo is at home full time, but I think his scenario is best case. He has a new set schedule and routine. I get paid to be his caregiver, via government-funded IHSS. California's regional center funding also helps him have three tremendously awesome aides, who take him out and about to movies, swimming, hiking, science museums, trampoline parks, and for the occasional lassi.

This new routine is not too bad, and I mean that. But often it is just him and me. Especially on Thursdays. And Leo needs to be busy, or he gets bored. Hence Adventure Days.

Adventure Days are mostly outdoor affairs. This is because Leo likes to keep moving, and also because he is loud and obviously disabled and we've found that being in close quarters with other humans sometimes results in us feeling unwelcome. Instead of internalizing that bullshit or being (perceived as) disruptive, instead of viewing his reality and presence as something to apologize for or hide, we simply don’t go to places that can't accommodate us, or where Leo might feel uncomfortable, or where he can’t leave if he needs to. 

The Pacific Ocean as seen through wildflowers.

Also, people who are ready to be around us or who are worthy of Leo's wonderfulness, well, they tend to self-sort. As you shall see.

For a recent Adventure Day, our plan was to drive down the local coast, hit up a fave bakery, hike through redwoods, then get Leo a perfect gas station quesadilla. We initially stayed on course, enjoying our glorious California spring delights: blazing blue skies, gleaming turquoise waves, and hills of neon orange California poppies betwixt electric yellow fields of mustard.

And then, right before the bakery, we spotted two young European women on the side of the road, waving in hopes of a pickup. I have reasonable caution, but it was an Adventure Day after all, and they looked like they could be my kids’ friends. Plus two out of three of my kids are absent from my home, and my excess untapped motherly impulses are hard to suppress. We picked them up. 

They were friendly and chill, told us their names were K and C, and that they were exploring the area. We told them we were en route to a fab bakery and that it was very close. They were up for it. For my part, I figured the short drive was long enough for them to get a sense of who Leo is and what hanging with him might be like. 

And reader, after the bakery? They stuck with us. They didn’t have to; they were two pleasant-looking young European women who hadn’t had any trouble getting rides before they met us. Their easygoing acceptance instantly endeared them to us both, as Leo knows damn well when people aren't cool with or to him. I asked them what they wanted to do, and they said they just wanted to get farther south along the coast. We were north of Año Nuevo State Park, so I asked if they were interested in a beach hike and maybe seeing elephant seals. They were. 

Sadly, we arrived on one of the last days of elephant seal mating season, so they couldn't get to the main beach as they didn't have reservations. But we could still do the two-mile trek to the tour staging area and nature demonstration space. (BTW, I believe I deserve a gold star for managing to not bark out answers to the docent’s questions about identifying cetacean and pinniped skulls, so as to give the tourist children chances to answer queries clearly aimed at them and not me.) 

That demonstration site docent kept a low-key eye on Leo, who is neither a candidate for nor would enjoy the tour. She was professional and managed to avoid making us feel scrutinized, but I’m guessing she also agreed with me that Leo might not be a great candidate to walk between infamously grumpy, ferocious, easily startled, two-ton elephant seals. To her credit, she never said anything—we didn’t join the tour group, so she didn’t have to. I appreciate this. I wonder how many people drag kids like Leo onto these trips. I hope it’s not many, and that the docents are gracious about pointing out potential competing access issues.

I had to purge my pent up Big Nature Nerd impulses somehow, and thankfully K and C patiently listened while I talked at them about how Año Nuevo Island became colonized by sea lions and elephant seals, why California is the Golden State not just because of the gold rush but because of the California Poppies that used to overabundantly gild our hills, how our shores used to teem with grizzly bears before they were hunted to extinction, how an Alaskan origin makes our coastal waters so cold.

Photo of Leo from behind on a trail to the beach.
He is wearing a blue tie-dyed shirt with yellow text that reads,
"Bench hiking is beautiful. Catch up if you want".

Leo was wearing his “bench hiking is beautiful, catch up if you want” shirt (designed by a friend just for Leo), so our new friends knew what to expect when he sat at every bench along the trail. Leo is a snuggler, and K laughingly permitted Leo to hug her elbow. Our companions took in the skies, the waves, the wildflowers, the Monterey pines, the sadly scorched hills after the Big Basin fire four years ago. They agreed that California’s coast is a precious place indeed. 

As we kept driving, we discussed how pandemic approaches differed in our respective countries, including the severe restrictions of their cities compared to the U.S. I told them that during the early months of the COVID outbreak, we spent a lot of time driving up and down the very coastal road we were on, so that Leo could be outside—but that initially the shores were patrolled by police and we weren’t allowed to get out of the car. We exchanged tales of that Year of Hell 2020, like Leo, his dad, and I hiking Big Basin State Park the day before it all burned down. 

I asked them if they’d like to join us for lunch. Again, they were game. My heart pinged. Turns out neither of them had ever had Mexican food. I told them that if they really wanted a treat they should try Oaxacan food, and described the moles, the mezcal. They were once again game. C exclaimed over mole negro. K tucked into a manhole cover-sized tlayuda with delight, despite the waiter’s caution that it might not be the easiest introduction to Mexico’s cuisine. Leo got his Adventure Day quesadilla. 

They asked Leo and me what his life was like. Including him, I told about the things Leo does that makes him happy—swimming, hiking, movies, science centers, road trips to visit beloved family, watching TV. Sometimes with me or his dad, sometimes with his beloved trio of aides. I said that every Leo deserves to be living in peak contentment and accommodation, however that looks for them. I reiterated how great our life can be, which is not the same thing as it always being easy. But on a really great Adventure Day, ours is a wonderful life.

We took a group selfie outside the Oaxacan restaurant. I air dropped it to C’s phone. I took their names but not their numbers. I gave them my card and told them to call me if they got in a jam, well actually to text me because I don’t pick up numbers I don’t know. I figured they were living their lives in spontaneity and weren't necessarily looking for connections. If they want to get in touch, they can. If not, we had a lovely day and Leo and I have treasured memories. We dropped them at the side of the road near what they said was a known hitchhiking nexus, and we all waved goodbye.

Later that day I went out to dinner with a BFF, and we got to talking about our very different high support adult guys. She asked if I was happy with Adventure Days, if I liked them. And I honestly do. I don't want to do them all day every day, just like Leo doesn't want to hang out with his mom all day every day. But a good Adventure Day is a thing of delight for us both. 10/10, no notes. 

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.

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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.

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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.

 

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.

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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.

[laughter]

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.

[applause] 

My Public Comment to the October 2021 IACC Meeting

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
www.ThinkingAutismGuide.com

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

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 wearing a mask is hard for you, if it fucking sucks and you hate it but you're doing it anyway because you understand the evidence and importance, you're not a bad person and you're not making it up or imagining it. I get it.

— Emily Paige Ballou (@epballou) July 14, 2020

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 wearing, It'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. 

[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

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

FOAM PIT!
[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.

PERFECT-FOR-LEO VANILLA SHEET CAKE

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

CAKE STUFF

• 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)

FROSTING STUFF

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

MAKE THE CAKE

• 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.

MAKE THE FROSTING

• 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.