Page 1 of 1 [ 2 posts ] 

ASPartOfMe
Veteran
Veteran

User avatar

Joined: 25 Aug 2013
Age: 64
Gender: Male
Posts: 28,202
Location: Long Island, New York

02 May 2022, 9:50 am

Autistic people have been excluded from advocacy conversations. Julia Bascom is changing that - by Sara Luterman

Quote:
April is Autism Acceptance Month, marked by hashtags, charity fundraising and celebrity parent interviews. Many articles will highlight autism hiring initiatives or, increasingly, famous people who are autistic themselves. You won’t see Julia Bascom in most Autism Acceptance Month coverage or any major ad campaigns.
This is somewhat by design — she prefers not to be interviewed.

Autism can make speaking difficult or draining for some, Bascom said. “In high school, I was a theater kid, but I primarily did stage managing. I like getting stuff done. I don’t like things being about me,” she told The 19th.
Still, Bascom has had an outsized impact on the modern neurodiversity movement, responsible for leading autistic advocacy and political organizing at a national level.

Still, Bascom has had an outsized impact on the modern neurodiversity movement, responsible for leading autistic advocacy and political organizing at a national level. Bascom is the executive director of the Autistic Self Advocacy Network (ASAN), the largest nonprofit in the United States operated entirely by and for autistic people. Since she took the helm in 2017, she has made ASAN a vital part of progressive political coalitions. While not many policy priorities have passed, Bascom’s mere presence in the room is significant. For most of the diagnosis’s existence, autistic people have been largely excluded from autism advocacy.

“There’s less hostility [now] to autistic people being in the conversation at all. People aren’t necessarily happy that we’re in the conversation, but they do expect us,” Bascom said.

It’s significant that conversation is being led by a woman: While women like climate activist Greta Thunberg and comedian Hannah Gadsby are gaining greater visibility, autism is still primarily associated with men.

Bascom has experienced that firsthand: She didn’t receive her diagnosis until she was in her early teens.
“I experienced what I think a lot of autistic women experience: cycling through 10 psychiatric labels before autism is the one that sticks,” Bascom said.

The neurodiversity movement was still in its infancy when she received her diagnosis. Social media platforms like Twitter and TikTok, a major force in the popularization of the movement, didn’t exist yet. Bascom, then in rural New Hampshire, connected to the autistic community through blogs.

“I was learning all of this really scary information about my brain and about my future,” Bascom recalled. “But at the same time, I was connecting to people who were telling me, ‘You’re going to be OK. There are a lot of people like you out there. You have value and worth and rights. I don’t think most autistic teenagers experience that when they start learning about autism.”

In high school, Bascom began working in segregated special education classrooms as a teacher’s aide, which she credits with having a profound impact on her career as an organizer. She saw herself reflected in the younger children she worked with.

Bascom has experienced that firsthand: She didn’t receive her diagnosis until she was in her early teens.
“I experienced what I think a lot of autistic women experience: cycling through 10 psychiatric labels before autism is the one that sticks,” Bascom said.

The neurodiversity movement was still in its infancy when she received her diagnosis. Social media platforms like Twitter and TikTok, a major force in the popularization of the movement, didn’t exist yet. Bascom, then in rural New Hampshire, connected to the autistic community through blogs.

“I was learning all of this really scary information about my brain and about my future,” Bascom recalled. “But at the same time, I was connecting to people who were telling me, ‘You’re going to be OK. There are a lot of people like you out there. You have value and worth and rights. I don’t think most autistic teenagers experience that when they start learning about autism.”l

In high school, Bascom began working in segregated special education classrooms as a teacher’s aide, which she credits with having a profound impact on her career as an organizer. She saw herself reflected in the younger children she worked with.

I think one of the hardest transitions any organization has to make is from its founder to its next executive director. She has very much made the organization her own. I’m very happy with her leadership, not just as her predecessor, but also as a longtime member of the autistic community,” Ne’eman said.

Over the past five years, ASAN’s policy team has doubled. Bascom has also taken steps to improve diversity within the organization to better reflect the autistic community. While the staff has always had strong representation of women and LGBTQ+ people, it has also, for most of its history, been very White. Bascom has been intentional in her hiring — most of the hires under her tenure have been people of color. “We still have a lot of work to do,” Bascom said.

Despite the broadly male public perception of autism, Ne’eman said that women and LGBTQ+ people had always been at the forefront of the neurodiversity movement. The founder of the neurodiversity movement, Jim Sinclair, is intersex and nonbinary, though the latter term was not yet in widespread use during the 1990s. Ne’eman believes that Sinclair’s experience doing advocacy around intersex issues deeply informed the foundation of the neurodiversity movement.

President Donald Trump was elected shortly after Bascom took over ASAN. One of Trump’s first orders of business was an attempt to cut Medicaid funding by repealing the Affordable Care Act. Many Americans with disabilities, including autistic Americans, rely on that funding to survive. Medicaid is the primary funder for home care in the United States. This can encompass assistance with everyday tasks as basic as eating or getting dressed in the morning. Many autistic and other Americans with disabilities rely on Medicaid to remain in their own homes rather than institutions.

She and other disability advocates “were on the Hill constantly,” fighting to stop the Trump administration from gutting Medicaid.

Bascom and other disability advocates were meeting with senators and representatives, begging them not to cut or cap Medicaid spending. The attempt to cut Medicaid and repeal the ACA failed.
The fight gave Bascom and other disability advocates new political capital. Labor unions and the reproductive rights movement both have strained histories with the disability community. That has changed significantly since 2017, in large part due to Bascom and other disability leaders building and maintaining bridges where none had previously existed.

Relationship building has been emblematic of her leadership style at ASAN.

“Julia is a powerful, intelligent, articulate woman. She’s not there to power grab… She’s not in the limelight because that’s just who she is,” said disability rights activist Judy Heumann. Instead, Heumann said, “[Bascom] is respected for who she is and what she does, for her ability to work well with other people.”

Still, there is much to do. The left-hand wall of Bascom’s office is covered by an enormous whiteboard, where everything from political strategies and inside jokes are mapped out. There is also a list of several bills and policy priorities the ASAN is working to advance: an end to disabled subminimum wage, banning the use of electric shock as punishment for disabled students, home care funding.

Bascom is pleased that some ideas she and the Autistic Self Advocacy Network have pushed for over a decade have gained traction:

But those ideas have been largely symbolic, according to Bascom. The lion’s share of autism funding still goes to genetics and other causal research.

During her time at ASAN, the organization has churned out dozens of easy read guides — written at a fourth grade reading level, with pictures — to support advocates with intellectual disabilities in advocating for themselves. The guides range from Medicaid to voting rights to the federal budget process.
“No one had ever explained Medicaid and the Affordable Care Act at a fourth grade reading level with pictures before. Even we didn’t know it was possible until we did it,” she said. It is the work Bascom is proudest of during her time leading ASAN.


_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


Mona Pereth
Veteran
Veteran

Joined: 11 Sep 2018
Age: 63
Gender: Female
Posts: 5,322
Location: New York City (Queens)

02 May 2022, 10:44 am

Good to see this info about some of ASAN's more important accomplishments. Thanks for posting this.

As I expected, though, in all these accomplishments, ASAN functioned as one small part of the larger disability rights movement. That seems to be the only way that the autistic rights movement has ever been able to get anything done.

It's great to see all the bridge-building that ASAN has done.

The only problem is, we still don't have much of a community (organized subculture) of our own, at our own end of all these bridges. While ASAN has done great work, we also need groups other than ASAN to build a much better-organized autistic community than now exists.


_________________
- Autistic in NYC - Resources and new ideas for the autistic adult community in the New York City metro area.
- Autistic peer-led groups (via text-based chat, currently) led or facilitated by members of the Autistic Peer Leadership Group.
- My Twitter (new as of 2021)