A September 28, 2023 blast email, signed by resigning executive director Julia Bascom, from autistic self advocacy network ASAN promoted the work of ASAN to small grassroots donor prospects.
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.
With gratitude,
Julia Bascom
Executive Director
Autistic Self Advocacy Network
Autistic Self Advocacy Network
PO Box 66122 [1038 Vermont Ave, NW suite 618 moved to suite 500 mostly virtual since March 2020 covid shutdowns prior address was 2013 H St 7th floor]
Washington, DC 20035
This link
scolding The Lancet for supporting a new diagnostic category of
"profound autism" started another battle in the war against "functioning
labels." This war against functioning labels started as the change in diagnosis was being discussed, between DSM 4 and DSM 5, to create a single diagnosis of Autistic Spectrum Disorder ASD that combined a newer diagnosis of Asperger Syndrome from DSM 4 into one ASD medical diagnosis, by May 2013, when the DSM 5 was finalized. "Profound autism" that The Lancet called for, as a diagnosis, used to be called low-functioning autism to distinguish the label from high- functioning autism often used synonymously with Asperger Syndrome.
, used to assure fair competition in 6 winter and 22 summer sports of the Paralympics, should
be adapted in state and federally-funded vocational rehabilitation assessment by Federal Education Department oversight policy.
Paralympics classification is the use of functioning labels done right. Individual difference between people with disabilities is acknowledged without segregating people or presuming incompetence or competence. The diversity of strength and weakness individual profiles is respected between people living with the same disability.
Adapting a classification scheme to assure fair competition for people with disabilities with elite athletic ability to the equitable and fair inclusion in the workplace or paying for home and community based services without paid work of people with disabilities without elite athletic ability will cost money that usually means taxing the corporate sponsors of the Paralympics.
