The Amazing, Vibrant and Resilient Autistic Community

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Interview with Julia Bascom by Haley Moss
Photograph by Conner Cummings

Our Guest Editor, Haley Moss, interviews Julia Bascom, the Executive Director for the Autistic Self Advocacy Network (ASAN). They are a national disability rights organization run by and for autistic adults. Julia and ASAN are focused on making this world a better place to be autistic—a place where everyone is safe, included, and valued for who they are.

Each of us has several different identities, and they all intersect to make us who we are. What are your identities, and how do they interact with your experiences as an autistic woman?

JULIA BASCOM: Besides being autistic, I identify as a multiply disabled, white, cis, lesbian. The intersections are complicated. It means I don’t always get to be my full self.

For example: because of the way my autism works, and because of my vision impairment, I sometimes need to hold on to someone’s arm when I’m in an unfamiliar place. When I’m out and about with my sister, I know that if I hold her hand, I (and she) will be perceived as a nondisabled lesbian, and if I hold her elbow, or if she holds me in a protective way, I’ll be perceived as a straight disabled woman. Both of those perceptions can lead to mistreatment–I have to decide if I would rather risk homophobia or ableism. I usually go with ableism, which at least doesn’t put my sister at risk. But if I go out with my support person, who happens to be a man, it doesn’t matter how I hold his arm–we’re just perceived as an anonymous, straight, nondisabled couple. Heterosexuality is magic. I’m safe! I’m passing! But I’m not me.

How did you become involved in autism advocacy?

JULIA: I got involved in a few different ways. As a teenager learning I was autistic, I was really lucky to stumble across blogs and writings by autistic adults who let me know that I was going to be okay and that there was a whole community of people just like me out there. I helped start a disability rights group called “No Pity” at my college, and I also interned in a self-contained special education classroom. I got involved with state-level disability advocacy, and a lot of things came together at once. I really liked doing state-level work–it’s very concrete. You can’t fix the whole world, but you can make things better for some folks in your corner of it.

But I ended up doing national work because I was consistently running into problems that couldn’t be solved at a state level. They were national problems, and they needed national solutions. Honestly, what galvanized me more than anything was working in special ed and watching how close one of our students came to being institutionalized. He ended up very narrowly avoiding that fate because of a paperwork mix-up. It really shook me, and I realized that if I wanted to keep the students I care about safe, I needed to go change the policies at a national level that still permitted the institutionalization and segregation of disabled people in the 21st century.

I think a lot of folks get involved in advocacy because they’ve seen things they can’t unsee, and they know things they can’t unknow. That’s what happened to me.

Ever since I read your blog post, “Quiet Hands,” it changed the way I think about how people attempt to change autistic children and their behaviors. Appropriately, your blog is called Just Stimming. How does stimming make you feel? Why is it so important to respect the stim? Do you think the acceptance of stimming is different amongst gender lines?

JULIA: Thanks! I actually called my blog “Just Stimming” because I saw so many students doing things that clearly had a communicative function be dismissed as “just stimming.” It was really frustrating! And also, there’s nothing “just” about stimming–it’s a core part of having a body and existing as an autistic person. It’s a big deal. It’s joyful, or calming, or compulsive, or centering–it’s the way our bodies and our sensory systems and our emotions work. It’s a part of who we are. When other people try to control it, it hurts us.

I’m not sure if acceptance of stimming differs along gender lines. I think it’s probably more complicated than that. Girls definitely do face a lot of gendered pressure to mask and hide our visibly autistic traits.

Can you tell us more about what ASAN does and is currently working on?

JULIA: We mainly do policy advocacy–working on laws and regulations. A lot of other autism organizations do direct service to autistic people and our families, which we don’t do. We’re a civil rights organization. Right now, we’re working on issues like community living, access to health care, alternatives to guardianship, fair wages, and ending abusive practices like restraint and seclusion. We are trying to make sure our advocacy materials are accessible to autistic people who also have intellectual disabilities, so everyone can participate, and we also do advocacy trainings for young autistic leaders who want to start organizing on their college campuses and communities. We do a lot of work with other disability rights organizations too–autistic people are disabled, and there aren’t many policy issues that only impact us. We’re stronger together.

Does intersectionality influence ASAN’s work? How?

JULIA: Absolutely. Autistic people aren’t just autistic–we have other disabilities, we have genders and sexualities and races and ethnicities. We are immigrants, we are low-income, we are people of color and religious minorities, we are LGBT, we are everything a person can be. ASAN is working hard to make sure we represent the entire autistic community and don’t leave anyone out of our advocacy. I don’t think we’re perfect, but we take it really seriously. For example, autistic people are much more likely to be trans than the general population, so we work with LGBT groups to make sure everyone is on the same page about our right to access gender-affirming care. We’ve objected to the ways the Trump administration is terrorizing immigrant communities, which disproportionately affects disabled immigrants. And we’re working to recruit more autistic people of color, autistic people with intellectual disabilities, and nonspeaking autistic people for our advocacy trainings, to make sure that we’re being as inclusive as possible.

How is ASAN working to help challenge the status quo for autistic women?

JULIA: A lot of people don’t realize this, but ASAN is actually a woman-led organization right now–our entire senior leadership team is women. So obviously we bring gender as a lens to everything we do. We focus on policy issues like community living and ending guardianship in part because we think our current system contributes to the catastrophic rates of abuse experienced by autistic women and girls, and we’re working with researchers on things like diagnostic disparities. We also work closely with the Autistic Women & Nonbinary Network–we always have a fun time together!

What do you believe are some of the biggest misconceptions about autistic women?

JULIA: Where to start! Obviously, there’s a widespread belief that autism is something that only applies to kids, so there’s not a lot of people who realize that autistic women even exist. Since we’re likely to be diagnosed much later, we also run into a catch-22–people won’t believe we are autistic, because if we were, surely someone would have noticed by now!

And then there’s the idea, which you see repeated in research a lot, that autism happens much less frequently in women than in men–that we exist at a ratio of 1:4 or 1:9 or something even more absurd. Of course, all of that research is flawed because it relies on diagnostic measures that we know miss women and girls. It’s silly to repeat those statistics. But people sure do anyway, including a lot of folks who should really know better,

A lot of autistic mothers report being really specifically hurt by the idea that autistic people are cold, lack empathy, or otherwise hurt the people around us. Similarly, autistic trans women speak powerfully about how the idea of autism as an “extreme male brain” isn’t just bad science, but actually really dangerous and actively harmful to trans people. It’s important to remember that misconceptions aren’t just silly mistakes–they hurt real people.

What do you think are the biggest challenges autistic women face?

JULIA: Women with developmental disabilities experience sexual violence at a rate of over 83%. This is far and away the highest assault rate among with disabilities–or women in general. Many, many factors feed into this—institutionalization, lack of community services that would enable us to leave abusive partners or families, lack of access to accessible communication we can use to talk about what’s happening, guardianships that keep us trapped with our abusers, societal attitudes about our disabilities, compliance training as young children that teaches us we don’t own our bodies, and isolation and segregation that keep us separate and vulnerable. The end result is an incalculable amount of violence and trauma.

How can we best tackle some of those issues and challenges?

JULIA: We need to do a lot of things. Close institutions, make sure than everyone who needs support to live in their own home can get it, make sure that everyone has access to communication and that everyone is included in all facets of community life. End guardianship, end ABA and other forms of compliance training, and change the way our society thinks about autism and developmental disabilities. We need to believe survivors. We need to listen to autistic people in general, and autistic women specifically. And we need to start yesterday.

What does it mean to you to be a “powerful woman?” How can autistic women share and tap into their power?

JULIA: To me, being powerful just means owning it. I’m six feet and one inch tall. My parents knew I would get teased for my height–for my height, and many other things–and they made sure I was proud of it, that I owned my height and made it a cherished part of who I am. I don’t know that I would call myself a powerful woman. But I represent an amazing, vibrant, resilient, challenging, beautiful community. And I can own that. I am proud of that community, and honored and humbled to be a part of it and to represent it to policy makers. It’s not about how I feel–it’s about who we are. And we are powerful.

Is there any advice you’d like give to autistic women?

JULIA: Own it.

For readers who want to learn more about you and your work, where should they look?

JULIA: Check out autisticadvocacy.org! We have a mailing list where people can sign up for action alerts, and we’re on twitter at @autselfadvocacy and The Autistic Self Advocacy Network Facebook page.