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 ..read more

In Leo's new life, post-school, Thursdays are Adventure Days. It's just the two of us, intentionally. Often we wander 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, which is different for Leo now that he has aged out of school. I don't think he's unhappy, but I do think he would prefer to be in another structured program. Unfortunately ..read more

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 ..read more

[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 ..read more

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 moth ..read more

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 ..read more

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 t ..read more

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 man ..read more

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 sn ..read more

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 d ..read more