Hi, I'm Julia, and you're listening to the thinking cluesive podcast recording from my office in
beautiful Marietta, Georgia. You are listening to the thinking cluesive podcast episode 13. We are starting a new series of podcasts beginning with this one. Fingers crossed. We would love to get them out to you every month. But we will see how that goes. So today we have Julia Baskin 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. Think inclusive.us backslash shop, where podcast listeners can take 30% off their order with promo code pod 30. So without further ado, here's the interview. Hello, and welcome to the thinking cluesive podcast. My name is Tim Vegas and I'll be your host. Today I'm going to be 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 a song, Giulia 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 si l. A. S. S. Inc. Welcome to the program. Thanks for being here.
Thank you for having me.
So it's April, which means it's autism acceptance month or autism awareness month or autism something month. So, the reason why I thought it'd be good for you to be on the program is I wanted I want our listeners to understand, you know, what is the Autistic Self Advocacy, Self Advocacy Network? And why is it different?
Sure, so is an is a national grassroots disability rights organization, and we are a self advocacy organization like it says in our name, and that means that unlike most other autism organizations, we are run entirely by autistic people ourselves. So I'm autistic, all of my staff are autistic. The majority of our board members are on the spectrum and so on and so forth, are 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 or kids or researchers or what have you. But the needs of adults continue just 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 to be frequently lacking in a lot of other artists and groups. So in layman's terms, that means we don't really talk about awareness or about autism for autism sake, we have specific changes we want to see are for our community in terms of inclusion, employment, housing, health care, and other policies like that. And I want to take a second to just really emphasize the importance of us being self advocate, Ron, 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 into the discussion. And that's a huge problem. And it causes a lot of misinformation about autism and stereotypes and other barriers for autistic people. That's why ASM is motto is nothing about us without us. First and foremost, we believe that whenever autism is discussed in the media and the halls of power in research, wherever people need to be at the table leading the conversation.
So that really sets you apart from other organizations. So I don't really know of any other organization that has such a, at least for autistic individuals. The focus on self advocacy is is there any or any other organizations that you can highlight, you know? I mean, they could be autism organizations or Not off the top of your head, that focus Their focus is self advocacy. So
there's the Autism Women's Network. And that's really the other main self advocacy organization. They are also self advocate run, they focus specifically on the needs of women and girls. And so they don't have like an adult specific focus. And they do, obviously a lot of work with families since. But if you want to sit girls, you need to talk to their parents and their families as well. They're a great organization, we do a lot of work with them. There are other self advocacy organizations in the developmental disabilities community. So we do a lot of work with Self Advocates Becoming Empowered, which is for people with intellectual disabilities, for example. But in autism, it's an AW button. And then there are some state and local groups that are getting bigger and stronger, which is really exciting to see. And hopefully, we'll see some more national groups as a result of that as well.
That's fantastic. Now, let's see thinking cluesive has been around for about five years. But how long has ASEAN been around? Because I believe I mean, I feel like it's from the very beginning. There was that I knew about you guys, but and gals. But do you know when did it start?
So as an as an organization, this is our 11th year, we had our 10 year anniversary out last November, the self advocacy movement, obviously has been around for decades. And then there were there was autistic activism and autistic advocacy before us, so there is Autism Network International and some other organizing that happen both locally and nationally, and even internationally. We've only had an office and a bank account for five years now. Okay. So we are still a lot younger than people tend to think.
All right. All right. And you were a nonprofit, is that correct? Yes. We're
a 501 C three. Okay. Great.
So in saying all that, and because we are that, you know, we are, I guess celebrating autism acceptance month here at think inclusive? You know, maybe let's talk about one of the biggest misconceptions, misconceptions about autism in your perspective.
Sure, just pick one. Home and
just yeah, just you know, throw a dart Yeah. Okay, so
there's a lot to choose from. I guess, sort of, like an overall pattern that I see, one of the things we see happen a lot of the time, is that people hear such scary things about autism. And then they meet narcissistic person, and they hopefully, in that interaction, notice that we are people, and that don't quite know what to do with that disconnect between us, you know, being a person, a real person in front of them, and everything we've heard about autism. And so they'll say things like, you know, like, you're autistic. But autistic people don't have feelings, or they don't talk or they don't grow up, or whatever the stereotype might be that they're that they've interacted with. Like I still remember the first time someone who I considered a really good friend said, but you have feelings in my face after finding out I was autistic. And like, I'm not, I'm not sure how someone's supposed to react to that. And I think we have this problem where the reality is, there are a lot of different ways to be autistic, just like there are a lot of different ways to have a brain or to be a person. And it doesn't make sense to think that autism is only one thing, but that seems to be where a lot of people are at right now.
Okay, well, that brings up a good point, because, you know, you have people who say, well, Julia Baskin, can articulate herself very well. And she can explain all these wonderful things about autism and you know, how she experiences the world. She is not like my child, my child is nonverbal. My child, my child, you know, stem so much that, you know, he, he or she hurts himself or other people, you know, my child has challenging behaviors might you know, so let's talk briefly or not. So briefly, I guess, if you want to, well, what you know, what would you say to people who I'm sure you get this, say, Well, you know, how can you speak for the Autistic community? You know, you are anything like my kid.
So, I think there's two different things to say about that. The first is, it's my job to explain autism and explain autistic people and explain my community's priorities. And I'm good at my job. And I'm sure that Many of the people who say these things wouldn't want to say that being autistic preclude someone from being good at their job. Beyond that, it's a pretty common saying in the Autistic community. That is, it's important to remember what you don't know, when you're encountering someone who's able to argue with you about autism, for example, 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, about their developmental history, about what their life is like outside of that interaction, and so on and so forth, we get the kind of emails you're describing pretty frequently. And like, I gotta say, 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 not 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 information, but it just doesn't match reality. There's, the reality is that autistic people who support ideas like disability rights, and neurodiversity, and autism acceptance, and 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 and on and on. And there's this idea that people with a certain kind of disability experience would naturally feel one way about their autism. And people who see more visibly disabled should feel a different way than in its extreme form, that belief looks like what you just described. And it looks like people saying that if you have any sort of positive, or even just neutral feelings about your disability at all, that you can't be disabled. And of course, that's ridiculous. But it's been a really persistent myth. And I think it's important to know that that's been around for long before AASA. And it's been said, since the self advocacy movement started. And I think it's important to remember that the self advocacy movement was originally led by people with intellectual disabilities who were institution survivors. So this has been around for a long time, regardless of you know, the reality that it is attached to, right. And I guess the last thing I would say is that, I wouldn't say that ASEAN 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. And I'm pretty comfortable with that, I wouldn't say that I represent every single autistic person in every thought they will ever have. But I am comfortable saying that I represent our communities, right to have these conversations about ourselves. Right,
right. Do you do you think that? Do you think that because that, you know, parents, because I'm assuming? I'm assuming and correct me if I'm wrong, that the emails or the pushback that you get from certain people are, are they are advocating or speaking for their child? Right, or for somebody who they know that has that is autistic. And maybe they can't see beyond? You know, what their own experience is? So therefore, they don't have that experience. So then they're saying, well, they're they're trying to reconcile that. Is that Is that fair?
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 that. Okay. The neurodiversity movement gets a lot of pushback, specifically, from people who believe that vaccines cause autism. Right. And I think that gets a lot more complicated. And then we also overlap just with, you know, the fact that people have bias against people with disabilities. And it's difficult to untangle that. I
think it is, I think it's it's definitely difficult. But part of part of what I hope, you know, this conversation and almost everything that we that we publish on the on the site will do is give another perspective so that people can see that there's a wide range of, of perspectives in the disability rights movement. And, and, as far as I mean, that's why, as far as I think, the idea of inclusion, right, we want, we want to have a big tent. You know, we want to have, we want to have discussion. We want to have respectful disagreement. And I want to be able to hear from people who just don't, who just don't understand why people don't Like, you know, Autism Speaks. Now we don't, you know, we've been very vocal about that. Some people may not like that about, about us in particular, or, and I know that use the ASEAN has spoken out against them as well. But we want people to come to the table and at least listen to each other. So that's why I wanted to have you on because I think it's really important for anyone who's listening to say, look, you know, your experience is different. And that's okay. Here's a person whose experience is different. That's okay. Let's listen and see if we can learn something. So let's lead into this question about awareness and acceptance. So what what do you think, in your opinion, is the difference between autism awareness and autism acceptance?
Sure. And just really quickly, I want to say, No, I think having that big tent is important, and we want to reach as many people as possible, but it's also, and I think this gets lost in a lot of our cultural conversations about autism and the way we talk about it as this abstract thing, it is important to remember that we're not disagreeing over pizza topics. We're disagreeing over people's lives and people's rights and how people deserve to be treated. And I think that does require us to think about the conversation a little bit differently than we would think about other kinds of disagreements. In terms of awareness versus acceptance, I think that awareness often lacks some really 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 facts or alternative facts about autism in a scarier way as possible, like 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. And I don't understand why we're trying to make people scared of a kid that's looking away from the camera. And I think the consequence of a lot of awareness campaigns is that they do influence how people think about autism. And then when that person has an autistic child, they have already been sort of primed to be scared of their child and scared of that child's disability. And that's the kind of thing that's going to have a huge impact on the parent child dynamic on the kind of life that child has on the expectations that that parent has, and it sets things off just on a really, a really negative and really dangerous starting ground. Acceptance, on the other hand, is, tries to correct for a lot of that, I would say that acceptance is more active, and more clearly values driven. So acceptance means that you know, that I'm autistic, or you know, about autism, and you know, that that's okay. Acceptance is about respect, and 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, or all these other terrifying things. Does that make sense?
Oh, yeah, yeah, definitely. So what is the is it? I guess? What are the current I guess? rates of autism? I don't know how I don't know the best way to say that incidence of autism? Because I believe the CDC, I think the most current is one in 68. Do you feel? Do you feel that is accurate?
I think we're getting closer. So a couple of things that will usually say about rates. One, the evidence is pretty clear that we're not seeing like an increase in the percentage of people who are who are autistic, we're seeing an increase in the percentage of people who we are identifying as autistic. Right. And we know and I think this is important to know when we think about specific numbers, that diagnostic disparities are still a huge thing. So we know that it's much harder to get a diagnosis. Once you're an adult, even if you're an adult who's experiencing significant disability. We know that women and girls are dramatically under diagnosed. We know that children of color are dramatically under diagnosed and often a get diagnosed later, and B are more likely to be diagnosed with other disabilities incorrectly, like intellectual disability or mental health disabilities and so on and so forth. Or seen as just problem kids who get funneled into the school to prison pipeline. I think the numbers are better than they'd 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 bit more as we correct for those diagnostic disparities but one in 68 is a a lot closer to the only real population level study that was done in South Korea. And that suggested it was one in I think, 38 kids, I can find the study and send it to you. Oh, yeah. And so I think we're gonna get a little bit closer to that. But the numbers have stabilized recently. And I think that's just reflective of the progress they've made and understanding what autism is and identifying people correctly. Right.
So let's talk about, let's talk a little bit about recovery. That word recovery, because I know that it I don't know if you know this about me, but when I first got into working in special education, I actually was a behavior therapist, and I did that for a year. And this was zero, you know, experience working with anyone with disabilities at all. That that was short lived. And then, you know, fast forward a few years, and I wanted to become a teacher. And looking back on my training, a lot of the training that I was given was about recovery about students, how do we get our kids that we work with to be and there's this, there's this quote, and I think it's a low vos quote, actually, it's that these kids are going to be indistinguishable from their peers. Right? Yeah. Right. Okay. So it was a going through my teacher training, which was fantastic, because it was really more about more, much more inclusive, as far as how do we look at disability and disability is a natural part of the human experience and stuff like that. So looking back, and going, there's a strong, I guess, way of thinking that, that you can recover from autism. And if you do these things, whether it's, you know, behavioral training, or whether it's diet, or it's, you know, any other medical procedure, that you can get the autism out, or something like that. So do you, do you first of all, think, I mean, I know the answer. But I guess what would you say to people who believe that people can recover from autism, and then also for people maybe who have experienced it themselves and say, Hey, I, I recover from Autism? I don't know if you get that.
So as a matter of science, I think the evidence is fairly clear that that recovery is not a real thing, research on people who have, you know, quote, unquote, lost the label, as it tends to be said, still tend to describe these adults as dealing with anxiety and depression and attention and funk and executive functioning impairments and sensory issues. And a lot of other things that sound like a whole lot of autistic adults that I know. And in reflection of that, the DSM five criteria, also, you know, says explicitly that you can meet criteria based on past developmental history. So you don't have to actively be showing a specific trait in adulthood to count. And that's more in line with how people work. I think you're absolutely right, that recovery is the stated goal of a vie behavioral analysis. And that's one of the reasons that ASEAN and self advocates generally have such strong objections to it, because just because someone is able to put on a good show, and act indistinguishable from their peers doesn't mean that their quality of life has improved. Or that they aren't experiencing disability or that they aren't still autistic, and just really good at faking it. And that's also not like an ethical goal. And it's not a goal that we have for other people. I think it's worth pointing out that I have our law offices, other projects with something called the effeminate boys project, which tried to have those same goals of recovery for young men who were thought to who are thought to be gay, young, young boys. And as a result of that, that became you know, conversion therapy and our society has come a lot further. And I say this is a member of the LGBT community and saying, Well, that's not okay. And that's not ethical. And so it's very confusing to me. That is not necessarily agreed to be ethical anymore for someone to spend a lot of time training me to act straight, but it is okay for them to spend a lot of time training me to also act like someone I'm not and suppress really natural and fun Mental ways of interacting with the world and thinking and being and communicating, so that I can ask an autistic, that just, that just isn't an ethical thing to do to someone. Right. Right. In terms of I mean, you asked about individuals, and I would never argue with an individual who referred 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. That's
good point. Yeah. Why don't we, let's pivot to inclusion, and inclusive education. Because along with that discussion of, I guess, training students or kids to be, or act a certain way. I think that when we're looking at inclusive education, specifically for autistic students, there is a big baby. With them being included in any sort of general ed setting, behavior tends to be the thing that everyone is kind of up in arms about or afraid of, or tends to be the challenging issue. Because well, this student is either, you know, having, you know, quote, unquote, meltdowns, or they're making a lot of noise, or they're having a hard time with, you know, XYZ. And, and so, people will say, you know, to me as an inclusion advocate, wouldn't these kids be better served in a self contained environment where they're comfortable, you know, safe? You know, and stuff like that? What I guess what is your opinion about inclusive education? And do you feel like there's a any sort of reason why you would want to have a separate environment for autistic students?
Sure. So in terms of, of inclusion, we think, and I think this is a really important baseline for us, generally, there's not some sort of bar people have to meet before they deserve to have their rights honored. So inclusion is a civil right in this country. And we would argue that it's a human right. And so conversations about whether or not someone is x enough to be in an inclusive setting, we tend to find that a useful way of coming at that is people. We know that people who are having a lot of challenging behaviors, and so on and so forth, are reacting to something, they're not doing things for no reason. And that usually, what's needed is either medical support for an issue that's gone undetected and is causing someone to be in pain. And or, and it's usually access to a functional communication system to some alternatives. Besides speech, when people have those tools, they tend to be able to regulate a lot better and to participate more. From an advocacy perspective, we know that segregated or substantially separate environments just breed more segregated environment. And often these settings get introduced or excused as Playstations. And places for people to get more training and get up to some sort of bar. You know, we've seen that historically, but we also know, since we've been doing this for a while that it's exceedingly rare for someone once they've been segregated, to be permitted back end. That's just not a thing that happens when you look at the whole picture. So as a matter of public policy, as civil rights advocates, we really just have to be essentially unilaterally opposed to the separate environments, because it's really hard to ensure people's rights otherwise. At the same time, I mean, it's not a secret that most schools aren't 100% inclusive, and that students and teachers and families are often asked to make the best of a bad or even just an imperfect situation. And I think that's a more personal decision.
Yeah, yeah, I definitely see that. I mean, I see that every day. I've seen that every day since I've been an educator. And what I typically do is if if I am with a family who and we're looking towards more inclusive placement, or setting and the family is 100% and then then we're going to do do that. But there are also times where parents and families don't want that. And they select the system the way that it is. And they sit and they say, No, I don't want that. I want my student in a self contained classroom, and I want them to get, you know, X amount of attention and, you know, X amount of support. So as a as an advocate for inclusive education, in, I have a lot of cognitive dissonance, because I want certain things for my family. And I see, you know, like, like what you said, the bigger picture where, you know, I see a world where it's just not an option. So then, therefore, we have to make it work. And because it is working all around the country, and that you can point to certain schools and certain districts that are doing that. But you can't, you know, force, I can't force my administration or the district or the state to make the changes that I want to see. And so, so yeah, it's a very personal decision. And fortunately, we have I mean, we have the Individualized Education Program, which is supposed to be an individual and personal decision. Based on basic theory, it's a beautiful theory. That's right. Yeah. But, but no, that I think that clarifies pretty well, you know, your position on that. And I would say that we're very much aligned in that in that respect. So if you don't mind can maybe let's talk about, I guess your personal experience with autism. And so I mentioned an IEP. So is that something that you experienced when you were growing up as an autistic person? Or did you get diagnosed later? Or what was it like growing up?
I actually don't usually talk about that publicly on media just because often the self advocate, once you start talking about that, that becomes all you're allowed to talk about. So I've drawn that line, because I'd be happy to talk with you about that offline. Okay,
no problem. Can we talk about the maybe some of the other questions about about? So you don't want to talk about any of your personal experience with autism? Okay, that's fine. No worries. So let's, why don't we do this? Let's, let's, I guess, close our eyes and travel 20 years into the future. And let's say what kind of world would you want to see? We know when you open your eyes and you traveled with the work with ASEAN has done the work with other disability rights advocates? You know, what kind of world would you want to see in 20 years?
Sure. Okay. So, 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 and feeling safe in their bodies and seeing autistic adults living lots of different lives, and having lots of different kinds of job. I'm hoping for a world where autistic people living great lives and also meeting day to day support, or communicating without speech is unremarkable, and normal, and honestly kind of boring, where we've really gotten past that idea that you can't have a good life and also the support. And I'm hoping for a world where my community can live freely, without fear of violence, and the 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.
That is our show. We would like to thank Julia from the Autistic Self Advocacy Network for joining us. Make sure you check out their website autistic advocacy.org. And you can find them on Facebook and Twitter. Follow thing conclusive on the web at thinking cluesive.us as well as on Twitter, Facebook, Google Plus 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 third conclusive podcast. Thanks for your time and attention
