6.24.2024

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.

Selfie of me on a mountaintop clearing trail. Leo is on the trail in the background with his baseball cap brim over his face.
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


5.01.2024

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, with white text on a black screen, as seen above the seated crowd in the SVA movie theater.
Promo screen for the movie Ezra at the SVA movie theater.

4.21.2024

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 blue Pacific Ocean seen between cypresses and above orange California poppies and bright yellow oxalis flowers.
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"..
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.