I am pleased to announce this is the 100th interview on the Learn From Autistics site! I’m especially excited to introduce Julia Bascom, Executive Director of the Autistic Self Advocacy Network. Julia is a leading voice in autistic self-advocacy and currently serves on the Centene National Disability Advisory Council, the advisory board of Felicity House, the board of the Consortium for Citizens with Disabilities, and the board of Allies For Independence. Julia is also the editor of Loud Hands: Autistic People, Speaking, an anthology of writings by autistic people. This week Julia discussed autistic identity, autistic representation, and how The Autistic Self Advocacy Network (ASAN) advocates for all autistic individuals.
In an interview with Haley Moss for Geek Club Books, you explained how you have multiple identities (autistic, multiply disabled, white, cis, lesbian), but you don’t always get to express all of them in public, and, sometimes, you are conscious of how expressing one interferes with how the people around you are perceived. This conscious self-expression appears much more complex and tiresome than it would for a heterosexual, non-disabled individual. What kind of self care is necessary to prepare for (or recover from) such public outings? What environment/setting are you most comfortable in?
I think this is something most multiply-marginalized people deal with! Autistic people of color, for instance have written about how the masking that some autistic people use to get through the day becomes even more complicated for them. A lot of autistic people report high levels of fatigue, and there are a lot of possible reasons for that (sensory overload, anxiety, inaccessibility, etc.), but it’s also worth considering how much energy we have to spend just dealing with a hostile world. I think a lot about how much energy I might get back if the world were more accepting. So I’d say it’s less about self care, and more about trying to fight for a world where we can all just be our full selves.
I first started following your work after reading Loud Hands: Autistic People, Speaking, which was an incredible celebration of autistic voices, and, I hope, a wake-up call to many parents, educators, and therapists. Has there ever been a marketing initiative to make this book required reading in university courses, therapist training programs, or other spaces where non-autistic “expert” autism training occurs? What were the obstacles and/or successes to this?
We haven’t done a formal marketing initiative–the main barrier there is just capacity. We’re a small organization, and we’re trying to do a lot on a shoestring budget. That said, I know several colleges do use it every semester, sometimes for disability studies classes and sometimes as teacher/therapist training.
I think, in order to really change how families and educators think about autism, we need something much bigger than a book. We need pervasive, positive portrayals of autism and disability in the media; we need special education classes co-taught with disabled people; we need easy-to-digest, concrete, hopeful resources that can be handed to parents in the same breath as a diagnosis. Most of all, we need autistic people and people with significant disabilities to be visibly and meaningfully included in our communities. That’s really the only way to get a generation of parents and therapists who don’t need to be trained to see us as a normal part of human diversity.
One of the largest groups of opponents to the Neurodiversity Movement or to public autistic pride is parents of autistic children who are exhibiting the most disabling symptoms, often referred to as “severe” and “unable to advocate for themselves.” They tend to feel that their children are being left out of the recent public conversation on autism. What advocacy tips do you have for this group of parents?
It’s important to point out that many self-advocates do in fact experience significant disabilities, and that many parent supporters of the neurodiversity movement have high-needs children. There’s a belief that anyone, or any family, who says they experience both autism and happiness must not really be disabled, and that’s just demonstrably not true.
I think one of the factors leading to this false dichotomy is that a lot of people don’t know of many examples of people with intellectual disabilities or intense support needs who are leading self-determined lives. It’s hard to imagine possibilities for your child that you haven’t seen before yourself. So I’d encourage families to get plugged into groups like The Arc, or TASH, which have been blazing a trail for full inclusion for the last half-century. I’d also encourage them to look at supportive autism parent groups, like the Thinking Person’s Guide to Autism.
Finally, the most important thing any parent can do is to make sure their child has access to an effective way to communicate. If your child is nonspeaking, this should be priority #1. ASAN has a guide for families trying to navigate this here.
Are there any drawbacks to advocating for neurodiversity and autism acceptance (for example, some advocates claim an emphasis on autism pride and acceptance diverts public and private funds from the needs of the most “severe” on the spectrum)? If someone makes a reference to funding such as this, what evidence should neurodiversity advocates point to that suggests otherwise?
I’d encourage them to look at the advocacy work ASAN does, which is overwhelmingly focused on people with significant support needs who rely on publicly-funded supports. Our work on fair wages, supported decision making, communication rights, organ transplant discrimination, and home and community-based services are all examples of this.
The fact is, the ideas that the neurodiversity movement tries to advance–inclusion, bodily autonomy, self-determination, human rights–are the most important for autistic people with the greatest impairments. The self-advocacy movement was founded by people with disabilities who were institution survivors. The modern disability rights movement was put into place by people with disabilities like polio and muscular dystrophy who often needed 24/7 assistance. That’s not an accident. Disability rights is for all disabled people, and it is most critical for those of us who are pushed farthest to the margins.
What are some of the most important public policy initiatives ASAN is currently advocating for?
In the last couple of years, we’ve unfortunately had to be very focused on protecting the Affordable Care Act and Medicaid, which are of life-or-death importance to millions of us. Those attacks have settled down a little, but we’re still keeping an eye on them, and talking about ways to make our health care and services system work better.
This year, we’re doing a big advocacy push to end subminimum wage for people with disabilities. Right now, a couple hundred thousand people with disabilities, mostly people with intellectual disabilities, are being paid literally pennies on the dollar for the work that they do. These folks are also typically in segregated workplaces, isolated from their broader community. We think that’s wrong, and we’re hoping to help pass the Transformation to Competitive Employment Act to end the practice for good.
We’re also very focused on ending the use of contingent electric shock at the Judge Rotenberg Center. Advocates have been fighting this fight since before ASAN was founded, and we’ve been putting pressure on the FDA to issue a ban for five years. I’m hoping that this is the last year we have to explain that torturing disabled children is wrong.
What mistakes do well-intentioned, neurotypcial autism advocates make?
I think some folks get so excited when they encounter self-advocates that they start bombarding us with questions about our lives and their children, who we might not have even met yet! It’s understandable to want some insight, and often self-advocates will try to answer some questions because we want the next generation to have an easier time than we did. But it’s important to remember that we aren’t walking autism dictionaries, that we get to have our own personal boundaries, and that every autistic person is different.
Do you know of any resources (books, videos, infographics, etc.) designed for young autistic children or adolescents that define and discuss autism in a positive way?
I know a couple folks who are working on this, but there isn’t much out there yet. We’re currently in the process of overhauling our materials to make them more accessible, which should help some adolescents, but there’s still not a ton out there for kids. It’s a huge need!