Remarks from Julia Bascom at United Nations Autism Event

Flags of member nations flying at United Nations Headquarters. 30/Dec/2005. UN Photo/Joao Araujo Pinto.

On April 5th, ASAN’s Executive Director, Julia Bascom, gave the keynote address at the United Nations event on empowering autistic women and girls. You can view a recording of the event here. The keynote starts at minute 48. 

Good morning! Thanks so much for having me here today. I want to start by acknowledging the sheer number of self-advocate speakers the UN has brought together today. I believe every panel has at least one self-advocate speaker, at least one authentic voice, and several are 50/50. That’s the kind of thing that should be commonplace. That should be the baseline assumption we have about autism events. But unfortunately it’s still very out of the ordinary. So I want to recognize the leadership the UN is showing, not only in bringing so many outstanding autistic women together, but in working so closely with us to set today’s agenda. This is an exciting time, and a promising change. And more importantly, I want to recognize all of the other autistic women in this room! Hi everyone. Can you believe we’re here?

I’m supposed to give a general overview of the state of the world for autistic women and girls today, but to be honest, I don’t think I’m going to be saying anything that the women here today don’t already know. The reality is autistic women have always been here. We’ve always been everywhere. We’re being noticed more now, which is new, but our existence and our strength and our vibrancy and the complexities and trials and joys of our life have always gone on regardless of who sees us. What I’m going to say might be new to people who haven’t been paying attention, but we know that autistic women have always had a lot to say about our lives and our communities and our world, and we’ve been saying it for a long time.

So, consider this a CliffsNotes version.

As a society, we still see autism as a negative, sad, scary thing. But for autistic women, an autism diagnosis can be a tool for empowerment. It’s an answer and an explanation, it’s a way out of cycles of self-blame and guilt, it’s a passport to an entire community, and if we’re lucky, it’s a connection to the understanding, supports, and services we need in order to truly thrive, sometimes for the first time in our life.

Access to diagnosis, however, is still deeply inequitable. Autistic women and girls are diagnosed much less frequently than autistic boys, and we’re often diagnosed later in life, or after we’ve gone through a roulette-wheel of other labels. One of the most common ways for autistic women to get diagnosed, in fact, is after we bring our own children in for assessment. The diagnostic criteria for autism are normed off of 4-year old white boys in upper-middle class families in the US, so anyone who doesn’t fit in that box has an uphill climb.

I’m most familiar with the US, so most of my examples are US-centric, but we do see common patterns globally. We still talk about autism as an “extreme male brain,” as though autistic women and girls don’t exist, as though autistic people aren’t more likely to inhabit the whole range and complexity of the gender spectrum, as though trans autistic women and girls aren’t a crucial part of our community. We still see significant underdiagnosis in communities of color, and we still have yet to truthfully confront the role racism plays in that. A diagnosis is still far too often dependent on access to certain resources and income, and the end result is that all across the globe, autistic women and girls are missed, overlooked, and ignored.

When we look at these kinds of persistent diagnostic disparities, it is hard for me to agree with theories which hold that women and girls are just genuinely less likely to be autistic. Maybe! But none of the studies meaningfully account for these kinds of systemic inequalities, and as an advocate for civil and human rights, I can’t unsee all of the ways autistic women and girls are swept under the rug. Instead of resting easily on statistics which claim only one autistic woman exists for every 2, 4, or 9 autistic men, we should be working relentlessly to close those gaps and make sure that everyone who needs a diagnosis is connected to equitable support. Then we can have a count, I suppose, if we still think we need one. My concern here isn’t really about data. It’s about justice.

Because as a society, all across the globe, we tell narrow stories about autism, and they hobble us. Ideas and stories have real world consequences. The stories we tell about autism may have expanded slightly in recent years, but they are still incredibly restrictive. We tell stories that say that being autistic and being an adult or a woman are incompatible, that autism is irreconcilable with strength or competence, that autistic people lack empathy or emotions, that autistic people are burdens on our family and psychically harm those around us, and, above all else, we tell stories that say that autistic people are voiceless and powerless. We tell stories that say, over and over again, that an autistic life is a frozen post-apocalyptic hellscape. We tell stories that pit autism and happiness as fundamentally opposed.

And all of these stories place enormous limits on the lives and futures of autistic women and girls. We have to spend our whole lives speaking up, speaking out, and finding ways to cut through these overpowering, disempowering narratives and find our truth. The only way to change this is to listen to autistic people. Listen to autistic women. Stop speaking over us, stop trying to help, stop insisting that we are the voiceless in need of a voice, and just listen.

Just listen.

Because we know what we need. We’ve got this.

It shouldn’t be surprising, but the needs and struggles of autistic women and girls are very similar to the needs and struggles of women and girls broadly. We need our voices to be heard and honored. We need access to education and employment, we need access to the tools that empower everyone to be a part of the world and in charge of our own destinies. We need equal pay, not segregated employment and subminimum wages. We need real education–not 40 hours a week of behavioral modification, not compliance training, not forced normalization, but a real education. I want to spend a second on this, because it’s important. The goal of the most popular autism therapy in the US is to render autistic women “indistinguishable from our peers,” and there are those who would export this model all over the world. But I didn’t wake up today dreaming of being just like everyone else–I woke up today and thought about how I was about to go flap my hands inside the UN. My life, in many ways, looks different from that of other women and girls–but in the essentials, it is exactly the same. I deserve that same endless possibility. I deserve that same support. I deserve to be my own best champion. I deserve to be my own sun, my own moon, my own stars. And none of that depends on how well I can make eye contact or how still I can sit or how fluently I can speak. This is my birthright as a woman. Autism shapes what it might look like, but it doesn’t change a single one of my rights.

As an autistic woman, however, my rights are less likely to be taken seriously. As an autistic woman, I’m more likely to lack access to comprehensive sex education, contraception, and reproductive health care. I’m less likely to be recognized, legally, as a person and a full citizen. I’m more likely to be subject to eugenic sterilization, even today. If I do have a child, but need support to be a parent, that support might specifically not exist for me, because of the ideas people have about my disability. In many places, that child can be taken away from me forever solely on the basis of my disability. The vast majority of autism research funding is spent on biomedical research, particularly research seeking to understand the cause and genetic underpinnings of autism. This research is often referred to as “prevention.” No price tag is too high, to ensure that no other children are born like me. The genetics of autism are complex, but we all know what happens next. We’ve seen it play out in the Down Syndrome community. It does not escape my notice that the voices of women with Down Syndrome are often missing entirely from that debate, and I fear the same for autistic women. Women with disabilities have some of the most relevant and most important voices in discussions about eugenics, reproductive rights, and women’s rights–but where are we being heard? What do we have to do to be heard?

Listen to us.

Listen to us. Women with intellectual and developmental disabilities, including autistic women and girls, are subject to sexual assault at a rate of over 83%. It is impossible to talk about autistic womanhood without talking about violence. Autistic women have been talking about this for decades. But when we make those conversations public, people draw back, because it is impossible to talk about the violence we experience without talking about how that violence is facilitated by the systems that are supposed to serve us. Lifetimes of behavioral conditioning and compliance training groom and victimize us. Inadequate service systems trap us in abusive marriages or family situations without escape, because who will take care of us if we leave? Domestic Violence services often aren’t ready for us and don’t know how to help. There are those who would try to turn this into a conversation about social skills, proposing that our disability itself is to blame. What a devastatingly cruel myth. We don’t project some kind of aura that compels people to abuse us; we are subject to violence because we are devalued and our abusers know this.

I say this not to bring us down, but to be clear about the road ahead. None of this is inevitable. All of this is changeable. Family life, education, and service provision all present with hundreds of opportunities to change this narrative every day. We can teach autistic girls, from the moment that they are born, that they are in charge of their bodies. We can teach autistic girls that their boundaries matter, that they are in charge of what happens to them, that their no means no and that their feelings and experiences and preferences are important. We can ensure that autistic women and girls are not segregated and isolated, but supported to live full, rich lives in the broader community. We can create service systems which enable all disabled women to live free of coercion, where we are in charge of who helps us and what help we receive and how. We can eliminate every barrier, every closed door, every narrow gate. We can create a world that values and supports and celebrates autistic women and girls. We know what we need to do.

The mother of the disability rights movement, Judy Heumann, famously said that independence isn’t about doing things on your own–it’s about being in charge of how things are done. As autistic women, we know that truth better than most. Most of us need support in order to get things done. Very few of us can live our lives on our own. That’s okay. Working out how that support can be provided can be tricky, but our needs and our disabilities are never in conflict with our rights. Our rights as autistic women are the same rights as any other woman, even if we need help all of the time, even if we can’t speak verbally, even if, even if, even if. Yes. Even then. The Convention on the Rights of Persons with Disabilities doesn’t come with a qualifying test. These rights are for all of us. This future is for all of us.

And the future is incredible. The things autistic women can do when we are supported and free are breathtaking. I have met women who have written books, women who have started companies, women who have invented new ways of seeing the world. I have met women who can’t speak but who type some of the most incisive commentary I’ve ever read, and I have meet women who produce works of art that render me speechless. I have met women who are taking on the world, and women who looked at their local communities and thought, well, I’m going to start here. Last month, I was at a dinner where an autistic journalist and the first Senate staffer with an intellectual disability haggled over how to place a piece of news coverage. None of this is dependent on the level of support we may need. We are changing what is possible, and we will bring everyone in our community along.

The women here today are incredible, and there are so many more of us. We are everywhere, and we are making our own future. We aren’t waiting on the rest of the world to catch up, but we’d love it if you came along. Thank you for bringing us together here. Thank you for listening.

Let’s get to work.