Autistic Self Advocacy Network: Shifting from Awareness to Acceptance ~ 501

Julia Bascom
Hi, I’m Julia, and you’re listening to the Think Inclusive podcast.

Tim Villegas
Recording from my office in beautiful Marietta, Georgia. You are listening to the Think Inclusive podcast, Episode 13. We are starting a new series of podcasts beginning with this one—fingers crossed! We’d love to get them out to you every month, but we’ll see how that goes.

Today we have Julia Bascom from the Autistic Self Advocacy Network. We talked about autism awareness—or is it autism acceptance? Also, we traveled 20 years into the future to talk about what Julia envisions for our world and autistic people.

After the podcast, please stop by our brand-new Think Inclusive store: thinkinclusive.us/shop, where podcast listeners can take 30% off their order with promo code POD30.

So without further ado, here’s the interview.

Hello, and welcome to the Think Inclusive podcast. My name is Tim Villegas, and I’ll be your host. Today I’m speaking with Julia Bascom, who serves as the Executive Director at the Autistic Self Advocacy Network. Previously, she did state-level work in her home state of New Hampshire, where she served on the Developmental Disabilities Council and co-led an interagency team to revitalize self-advocacy within the state.

In addition to her work with ASAN, Julia edited Loud Hands: Autistic People, Speaking, an anthology of writings by autistic people, and currently serves on the Disability Equality Index Advisory Board, the Centene National Disability Advisory Council, and the board of Advance S.I.L.A.S.S. Inc.

Welcome to the program. Thanks for being here.

Julia Bascom
Thank you for having me.

Tim Villegas
So it’s April, which means it’s Autism Acceptance Month—or Autism Awareness Month—or Autism Something Month. The reason I thought it’d be good for you to be on the program is I want our listeners to understand: What is the Autistic Self Advocacy Network, and why is it different?

Julia Bascom
Sure. ASAN is a national grassroots disability rights organization, and we are a self-advocacy organization—like it says in our name. That means, unlike most other autism organizations, we are run entirely by autistic people ourselves. I’m autistic, all of my staff are autistic, the majority of our board members are on the spectrum, and so on.

We’re also the only autism organization that focuses exclusively on the needs and priorities of autistic adults. There are lots of other organizations that focus on families, kids, researchers, or what have you, but the needs of adults continue to be neglected overall.

We mainly do policy advocacy and systems change, and we bring a civil rights framework to that work, which we find is frequently lacking in a lot of other autism groups. In layman’s terms, that means we don’t really talk about awareness or autism for autism’s sake—we have specific changes we want to see for our community in terms of inclusion, employment, housing, healthcare, and other policies.

I want to emphasize the importance of us being self-advocate-run. We believe very strongly that the best experts on autism are autistic people ourselves. There’s a tendency in our society to talk about autism without actually involving any autistic people in the discussion. That’s a huge problem—it causes misinformation, stereotypes, and other barriers for autistic people. That’s why ASAN’s motto is “Nothing About Us Without Us.” We believe that whenever autism is discussed—in the media, in the halls of power, in research—autistic people need to be at the table, leading the conversation.

Tim Villegas
That really sets you apart from other organizations. I don’t know of any other organization that has such a focus on self-advocacy for autistic individuals. Are there any other organizations you can highlight that also focus on self-advocacy?

Julia Bascom
There’s the Autism Women’s Network, and that’s really the other main self-advocacy organization. They are also self-advocate-run and focus specifically on the needs of women and girls. They don’t have an adult-specific focus, and they do a lot of work with families—because if you want to support girls, you need to talk to their parents and families as well. They’re a great organization, and we do a lot of work with them.

There are other self-advocacy organizations in the developmental disabilities community. We work with Self Advocates Becoming Empowered, which is for people with intellectual disabilities, for example. But in autism, it’s ASAN and AWN. There are also some state and local groups that are getting bigger and stronger, which is really exciting to see. Hopefully, we’ll see more national groups as a result of that.

Tim Villegas
That’s fantastic. Think Inclusive has been around for about five years. How long has ASAN been around? I feel like I’ve known about you all from the very beginning.

Julia Bascom
As an organization, this is our 11th year. We had our 10-year anniversary last November. The self-advocacy movement has been around for decades, and there was autistic activism and advocacy before us—like Autism Network International and other organizing that happened locally, nationally, and even internationally.

We’ve only had an office and a bank account for five years now. So we’re still a lot younger than people tend to think.

Tim Villegas
And you’re a nonprofit, correct?

Julia Bascom
Yes, we’re a 501(c)(3).

Tim Villegas
Great. Since we’re celebrating Autism Acceptance Month here at Thinking Inclusive, let’s talk about one of the biggest misconceptions about autism from your perspective.

Julia Bascom
Just pick one?

Tim Villegas
Yeah, just throw a dart.

Julia Bascom
There’s a lot to choose from. One overall pattern I see is that people hear scary things about autism, then they meet an autistic person and—hopefully—notice that we’re people. They don’t quite know what to do with that disconnect between us being real people and everything they’ve heard about autism.

So they’ll say things like, “You’re autistic? But autistic people don’t have feelings,” or “They don’t talk,” or “They don’t grow up,” or whatever stereotype they’ve internalized. I still remember the first time someone I considered a good friend said, “But you have feelings?” after finding out I was autistic. I’m not sure how someone’s supposed to react to that.

There are a lot of different ways to be autistic—just like there are a lot of different ways to have a brain or be a person. It doesn’t make sense to think autism is only one thing, but that seems to be where a lot of people are at right now.

Tim Villegas
That brings up a good point. People say, “Julia Bascom can articulate herself very well and explain all these wonderful things about autism and how she experiences the world. She’s not like my child. My child is nonverbal. My child stims so much that they hurt themselves or others. My child has challenging behaviors.” What would you say to people who say, “How can you speak for the autistic community? You’re nothing like my kid.”

Julia Bascom
I think there are two things to say about that.

First, it’s my job to explain autism, autistic people, and our community’s priorities—and I’m good at my job. I’m sure many of the people who say these things wouldn’t want to say that being autistic precludes someone from being good at their job.

Beyond that, it’s a pretty common saying in the autistic community: it’s important to remember what you don’t know. When you’re encountering someone who’s able to argue with you about autism, all you know from that interaction is that they’re able to have that specific conversation at that specific time. You don’t know anything about their medical history, developmental history, or what their life is like outside of that interaction.

We get the kind of emails you’re describing pretty frequently. I have yet to see a description of someone in those emails that doesn’t match my life or the life of one of my staff members at some point in time. We have board members who are non-speaking. We have staff who don’t live independently. I’m not going to comment on my personal abilities and support needs since that’s private, but it just doesn’t match reality.

Autistic people who support ideas like disability rights, neurodiversity, and autism acceptance—that’s most autistic people—have a really diverse range of backgrounds and disability experiences. Some of us can talk, some of us can’t move independently, some of us can’t—and so on. There’s this idea that people with a certain kind of disability experience would naturally feel one way about their autism, and people who seem more visibly disabled should feel a different way.

In its extreme form, that belief looks like what you just described. It looks like people saying that if you have any sort of positive—or even just neutral—feelings about your disability, then you can’t be disabled. Of course, that’s ridiculous. But it’s been a persistent myth.

It’s important to know that this has been around long before ASAN. It’s been said since the self-advocacy movement started. That movement was originally led by people with intellectual disabilities who were institution survivors. So this has been around for a long time, regardless of the reality it’s attached to.

I wouldn’t say ASAN ever speaks for any specific person. But we do speak out, for example, on the right of every person to have a robust communication system so they can tell us what they think. I’m pretty comfortable with that. I wouldn’t say I represent every single autistic person in every thought they’ll ever have, but I am comfortable saying that I represent our community’s right to have these conversations about ourselves.

Tim Villegas
Do you think that the pushback you get—those emails—are from people advocating or speaking for their child? Maybe they can’t see beyond their own experience, so they say, “Well, this doesn’t match what I know.” Is that fair?

Julia Bascom
That’s a challenging question. I think that might be true for some people, and I think that’s certainly how a lot of folks perceive it.

The neurodiversity movement gets a lot of pushback, specifically from people who believe that vaccines cause autism. That gets a lot more complicated. We also overlap with the fact that people have bias against people with disabilities, and it’s difficult to untangle that.

Tim Villegas
It is definitely difficult. But part of what I hope this conversation—and almost everything we publish on the site—will do is give another perspective. So people can see there’s a wide range of perspectives in the disability rights movement.

That’s why I think the idea of inclusion is so important. We want to have a big tent. We want discussion. We want respectful disagreement. I want to hear from people who don’t understand why people don’t like Autism Speaks. We’ve been very vocal about that. Some people may not like that about us, and I know ASAN has spoken out against them as well.

But we want people to come to the table and at least listen to each other. That’s why I wanted to have you on—because it’s important for anyone listening to say, “Look, your experience is different, and that’s okay. Here’s a person whose experience is different, and that’s okay. Let’s listen and see if we can learn something.”

So let’s lead into this question about awareness and acceptance. What do you think is the difference between autism awareness and autism acceptance?

Julia Bascom
Sure. And just really quickly—I think having that big tent is important, and we want to reach as many people as possible. But I also think this gets lost in a lot of our cultural conversations about autism. We talk about it as this abstract thing. It’s important to remember that we’re not disagreeing over pizza toppings. We’re disagreeing over people’s lives, people’s rights, and how people deserve to be treated. That requires us to think about the conversation differently than we would other kinds of disagreements.

In terms of awareness versus acceptance: awareness often lacks important context. Like, okay, I’m aware of autism—but what does that mean? What do I do with that?

Over the last decade, we’ve seen a lot of awareness campaigns focus on making the public know a few stereotypical—or even false—facts about autism in the scariest way possible. I’m thinking about the omnipresent Autism Speaks posters in DC right now, where you see a child in black and white looking away from the camera. I don’t understand why we’re trying to make people scared of a kid looking away from the camera.

The consequence of a lot of awareness campaigns is that they influence how people think about autism. Then, when that person has an autistic child, they’ve already been primed to be scared of their child and their child’s disability. That has a huge impact on the parent-child dynamic, the kind of life that child has, and the expectations that parent has. It sets things off on a really negative and dangerous starting ground.

Acceptance tries to correct for that. It’s more active and clearly values-driven. Acceptance means you know I’m autistic, and you know that’s okay. It’s about respect, inclusion, and community building—as opposed to thinking you know the “warning signs” for me, and hearing that having a kid like me is more common than being in a car crash or being hit by lightning.

Does that make sense?

Tim Villegas
Oh yeah, definitely.

Tim Villegas
So what are the current rates of autism? I think the CDC’s most current number is one in 68. Do you feel that’s accurate?

Julia Bascom
I think we’re getting closer. A couple of things we usually say about rates: the evidence is pretty clear that we’re not seeing an increase in the percentage of people who are autistic—we’re seeing an increase in the percentage of people who we are identifying as autistic.

We know diagnostic disparities are still a huge issue. It’s much harder to get a diagnosis once you’re an adult, even if you’re experiencing significant disability. Women and girls are dramatically underdiagnosed. Children of color are dramatically underdiagnosed and often get diagnosed later. They’re more likely to be misdiagnosed with other disabilities like intellectual disability or mental health conditions, or just seen as “problem kids” who get funneled into the school-to-prison pipeline.

I think the numbers are better than they’ve been in previous years. I think we’re getting closer to having an accurate number. I would expect to see the number go up a little more as we correct for those diagnostic disparities. One in 68 is a lot closer to the only real population-level study that was done in South Korea, which suggested it was one in 38 kids. I can find the study and send it to you.

So I think we’ll get a little closer to that, but the numbers have stabilized recently. That reflects the progress we’ve made in understanding what autism is and identifying people correctly.

Tim Villegas
Let’s talk about the word “recovery.” I don’t know if you know this about me, but when I first got into working in special education, I was a behavior therapist for a year. I had zero experience working with anyone with disabilities. That was short-lived. A few years later, I became a teacher.

Looking back on my training, a lot of it was about recovery—about how to get our kids to be “indistinguishable from their peers.” I think that’s a Lovaas quote, actually.

My teacher training was much more inclusive, focusing on disability as a natural part of the human experience. But there’s still a strong belief that you can recover from autism—whether through behavioral training, diet, or medical procedures.

What would you say to people who believe recovery from autism is possible? And what about people who say they’ve experienced it themselves?

Julia Bascom
As a matter of science, the evidence is fairly clear that recovery is not a real thing. Research on people who have “lost the label,” as it’s often said, still describes these adults as dealing with anxiety, depression, attention and executive functioning impairments, sensory issues—things that sound a lot like autistic adults I know.

The DSM-5 criteria explicitly say you can meet criteria based on past developmental history. You don’t have to actively show a specific trait in adulthood to count, and that’s more in line with how people work.

You’re absolutely right that recovery is the stated goal of applied behavior analysis. That’s one of the reasons ASAN and self-advocates generally have strong objections to it. Just because someone can put on a good show and act indistinguishable from their peers doesn’t mean their quality of life has improved, or that they aren’t still autistic and just really good at faking it.

That’s not an ethical goal. It’s not a goal we have for other people. I think it’s worth pointing out that Lovaas’s other projects included something called the “Feminine Boys Project,” which tried to achieve similar goals of recovery for young boys thought to be gay. That became conversion therapy. Our society has come a long way in saying that’s not okay.

As a member of the LGBTQ community, I find it confusing that it’s no longer considered ethical to train someone to act straight, but it’s still okay to train someone to act non-autistic—to suppress natural and fundamental ways of interacting with the world, thinking, and communicating. That’s just not ethical.

In terms of individuals, I would never argue with someone who refers to themselves as recovered. That’s not my place. But as an advocate, I’d rather focus on the culture that makes people feel the need to say that about themselves.

Tim Villegas
That’s a good point. Let’s pivot to inclusion and inclusive education. When it comes to autistic students, behavior tends to be the big issue. People say, “This student is having meltdowns, making noise, struggling with XYZ.” They ask, “Wouldn’t these kids be better served in a self-contained environment where they’re comfortable and safe?”

What’s your opinion about inclusive education? Is there ever a reason to have a separate environment for autistic students?

Julia Bascom
In terms of inclusion, we think—and this is a really important baseline—there’s not some sort of bar people have to meet before they deserve to have their rights honored. Inclusion is a civil right in this country, and we would argue it’s a human right.

So conversations about whether someone is “X enough” to be in an inclusive setting—we find it useful to remember that people who are having challenging behaviors are reacting to something. They’re not doing things for no reason. Usually, what’s needed is either medical support for an undetected issue causing pain, and/or access to a functional communication system—some alternative to speech.

When people have those tools, they tend to regulate better and participate more.

From an advocacy perspective, we know that segregated or substantially separate environments breed more segregation. These settings are often introduced as places for people to get training and “get up to the bar.” But historically, it’s exceedingly rare for someone who’s been segregated to be permitted back in. That’s just not something that happens.

As a matter of public policy and civil rights, we have to be essentially unilaterally opposed to separate environments. It’s really hard to ensure people’s rights otherwise.

At the same time, it’s no secret that most schools aren’t 100% inclusive. Students, teachers, and families are often asked to make the best of a bad—or even just imperfect—situation. That’s a more personal decision.

Tim Villegas
Yeah, I definitely see that. I see it every day. I’ve seen it every day since I’ve been an educator. What I typically do is, if I’m with a family and we’re looking toward a more inclusive placement or setting, and the family is 100% in, then we’re going to do that.

But there are also times where parents and families don’t want that. They select the system the way it is. They say, “No, I don’t want that. I want my student in a self-contained classroom. I want them to get X amount of attention and X amount of support.”

As an advocate for inclusive education, I have a lot of cognitive dissonance. I want certain things for my family, and I see the bigger picture—like you said—where I see a world where it’s just not an option. So then, we have to make it work. And it is working all around the country. You can point to schools and districts that are doing it.

But I can’t force my administration, district, or state to make the changes I want to see. So yeah, it’s a very personal decision. Fortunately, we have the Individualized Education Program, which is supposed to be an individual and personal decision.

Julia Bascom
In theory.

Tim Villegas
It’s a beautiful theory.

Julia Bascom
That’s right.

Tim Villegas
That clarifies your position pretty well. I’d say we’re very much aligned in that respect.

If you don’t mind, can we talk about your personal experience with autism? I mentioned an IEP—was that something you experienced growing up as an autistic person? Or were you diagnosed later? What was it like growing up?

Julia Bascom
I actually don’t usually talk about that publicly in media. Often, once a self-advocate starts talking about that, it becomes all they’re allowed to talk about. So I’ve drawn that line. I’d be happy to talk with you about it offline.

Tim Villegas
No problem. Can we talk about some other questions? You don’t want to talk about any of your personal experience with autism?

Julia Bascom
That’s right.

Tim Villegas
Okay, no worries. Let’s do this—let’s close our eyes and travel 20 years into the future. What kind of world would you want to see? With the work ASAN has done, the work of other disability rights advocates—what kind of world would you want to see in 20 years?

Julia Bascom
Sure.

First, I’m hoping for a world where parents have stopped letting their kids get sick and die from preventable illnesses because they’re so scared of my disability.

I’m hoping for a world where autistic kids can grow up loving themselves, feeling safe in their bodies, and seeing autistic adults living lots of different lives and having lots of different kinds of jobs.

I’m hoping for a world where autistic people living great lives—and also needing day-to-day support or communicating without speech—is unremarkable and normal, and honestly kind of boring. Where we’ve really gotten past the idea that you can’t have a good life and also need support.

And I’m hoping for a world where my community can live freely, without fear of violence, and be all of the amazing and beautiful possibilities that we can be.

I don’t know if we’ll get there in 20 years, but I think we can get closer.

Tim Villegas
That is our show. We’d like to thank Julia from the Autistic Self Advocacy Network for joining us. Make sure you check out their website: autisticadvocacy.org. You can also find them on Facebook and Twitter.

Follow Thinking Inclusive on the web at thinkinclusive.us, as well as on Twitter, Facebook, Google+, and now Instagram.

Today’s show was produced by myself, talking into USB headphones, a MacBook Pro, GarageBand, and a Skype account. You can also subscribe to the podcast via the iTunes Music Store or Podomatic.com—the largest community of independent podcasters on the planet.

From Marietta, Georgia, please join us again on the Think Inclusive podcast. Thanks for your time and attention.