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 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.