Dear friends of ASAN,
This fall marks my 12th year of working for ASAN, and my 7th serving as our Executive Director. As I walk through ASAN’s offices in downtown Washington, DC, I remember the days when we were a handful of autistic people in a couple of different states with laptops. We’ve come a long way.
For the last seven years, I have been blessed to lead ASAN as we’ve worked to make sure that autistic people are in control of our own lives and have a say in policies that affect us. We’ve worked hard to build the advocacy infrastructure our movement needs, fought back countless attacks on our community, and made sure our community has accessible tools to keep pushing for our rights.
With your help, we have fought and won numerous policy battles in the past seven years. In 2017, ASAN helped save the Affordable Care Act & Medicaid. We have continued to make community living a priority,— fighting for the HCBS Settings Rule and control over our own services. We have worked to address the systemic issues with our criminal legal system, including addressing police violence, structural racism, and the school-to-prison pipeline. In 2021, ASAN, along with COPAA, Communication First and families, secured a tremendous victory after challenging the Fairfax County Public Schools’ use of restraint and seclusion, paving the way for more challenges against seclusion and restraint throughout the US. We fought health care discrimination during the COVID-19 pandemic. We have continued to fight to#StopTheShock, and have called on the FDA to reissue the 2019 ban as quickly as possible. And when the Supreme Court threatened bodily autonomy and self-determination for everyone in the Dobbs decision last year, we helped lead the disability community response.
I’m especially proud of the work ASAN has done to make policy advocacy accessible to as many self-advocates as possible. In the last 7 years, ASAN has released over twenty Easy Read resources on the issues that affect us, like community living, racial justice, and more. We have continually improved our Easy Read skills and trained other disability organizations on how we do it. Since 2020, we have released 53 accessible COVID-19 resources, including Easy Read and plain language toolkits and videos. In 2020, we began translating some of our resources into Spanish. In 2023, we released “Bienvenidos a la Comunidad Autista,” the Spanish translation of our introductory “Welcome to the Autistic Community,” first published in 2020. In 2019, we unveiled our proxy calling system to make civic engagement accessible to many more members of our community. And in the last seven years, ASAN has trained 124 advocates through theAutism Campus Inclusion (ACI) Leadership Academy (and 206 total since the first training in 2012)!
As we have since our beginning, we have fought to make sure that all members of our community are included, and rebuked constant attempts to bring back functioning labels or funnel some people into segregated “services.” We have challenged autism organizations led by non-autistic people who adopt “acceptance” aesthetics without changing their actions. We’ve weighed in on autism-specific therapies, and in 2022, ASAN released detailed ethical guidelines for genetic research. Day in and day out, we tell policymakers that “Nothing About Us, Without Us” isn’t an impossible ideal but rather the minimum our community deserves, and that disability rights, neurodiversity, and autism acceptance are for all autistic people.
As I look towards the future, I know we have much more work to do–and I know that ASAN is in a strong position to undertake that work. I know that our community is strong, and I know that when we fight together to make the changes we need, we can win.
I also know that it is time for me to take a step back. As I shared last year, I developed Long COVID in May of 2022. Like millions of other Americans, I am facing the reality of a new disability, a lack of effective treatments and services, and an inability to continue working. I will be stepping down as Executive Director at the end of this year, and the ASAN Board will conduct an open search for a new Executive Director. More information on the search process will be available in the coming months. While the search takes place, my current deputy Avery Outlaw will serve as ASAN’s Interim Executive Director. I am confident in Avery’s leadership, and we will spend the next three months working to ensure a smooth transition.
This is a bittersweet transition for me. I love ASAN, I love the autistic community, and I love the broader self-advocacy movement created by people with intellectual and developmental disabilities. I have been doing this work since I was a teenager, mentored by the self-advocates who survived and closed my home state’s major institution. I love this work, and I go to bed every night thinking about how much more there is to be done. I take great joy and comfort in the fact that our movement is tangibly stronger than it was when I was a teenager. As Executive Director, I have met countless self-advocates doing incredible work to build a better world for our community: training health care providers, fighting to end subminimum wage in their states, supporting AAC users, creating resources for families, defending gender-affirming care for trans autistic people, protesting restraint and seclusion, creating local peer support networks, running for office, leading transformative research, preserving our history, cultivating autistic culture, building deep partnerships across movements, and so much more. I know our community will keep showing up for the next generation of autistic kids every day, and I know ASAN will keep doing everything we can to equip our community with tools for systemic advocacy and powerful change.
Over the past year as I’ve navigated medical leave, ASAN’s incredible staff have kept us running. We’ve fought back against attacks on trans autistic people, released several new resources and started drafting even more, trained people who use community living services on their rights, continued the fight to #StopTheShock, weighed in on critical regulations and federal policy developments, and held a major symposium with autistic people, researchers, and autistic researchers to discuss a research agenda that reflects our community’s needs. I’m confident that ASAN will continue to thrive in my absence because we’ve already shown that we can.
We often say at ASAN that when we were first founded, people were shocked if a single self-advocate was in the room. Now, policymakers and those in power may not want us there, but they’ve learned to expect we’ll show up anyway. We’re slowly but surely approaching critical mass, rocking and flapping our way toward the day when all policy impacting autistic people is led first and foremost by autistic people ourselves. That work is so much bigger than any one person. It has been an honor to be a small part of this movement, and I cannot wait to see what our community does next.
Autistic Self Advocacy Network