Last week, I had the honor of delivering remarks at the 10th anniversary celebration of the Autistics Association of Greater Washington, one of the largest independent Autistic-run social groups in the United States. For my 2015 Autistics Speaking Day blog post, I’ve decided to share those remarks:
Thank you so much for having me, and I have to say that it’s an honor and a privilege to speak to AAGW. I am profoundly grateful to Mark and Chuck and the other founders, leaders and members of AAGW for pulling this group together and making it a reality. This being your 10th anniversary, it’s important for us to take a moment and realize that the Autistic community has grown a lot over the last 10 years and Autistic people in all of our diversity are a lot more visible. A decade ago, it was a really scary and unprecedented thing to try and pull together a meeting of Autistic adults. I remember what that was like – you do too.
Autism was something that was only thought about in the context of children. When they thought of autism in adults at all, it was Dustin Hoffman in Rain Man. The level of stigma and prejudice – while still present today – was even greater for our invisibility ten years ago. So let me start by extending my own round of flapplause for all of the founders of AAGW and for all of you who are creating and sustaining Autistic-run groups in the area and throughout the country.
I think it is a mark of the strength of our community that this weekend we have three DC area Autistic-run events, including one that even conflicts with this one. I find that really exciting, because I remember when you couldn’t find even one Autistic-run event for months on end, so the fact that we now have many vibrant and growing Autistic cultural and community activities in our area is something truly inspiring and speaks well for the future of our community.
I also think that as we start to look at a much broader Autistic community, and a community that includes people that have grown up knowing they are Autistic and are much more comfortable in their Autistic identity than we were when we were growing up a decade ago, it comes time for us to spend some time thinking about who we are and where we’re going as a community. And these periods of reflection often come up after periods of really intense change. Sometimes that’s negative change. I think about the way, for example, that my own religion and ethnicity was shaped by things like the exile of the Jewish people and the destruction of Jewish sovereignty two thousands years ago. I think about how many of the modern victories of the gay rights movement came out of a wave of political activism that was driven by the HIV/AIDS epidemic in the 1980s and how that shaped the modern LGBTQ movement in many ways.
Sometimes it’s also because of positive change that we start to think about who we are and how our culture is going to respond to things. Many elements of the vibrant African-American culture that has been so important to the history of our country was heavily influenced not only by the legacy of slavery’s terrible toll but also by the debates that characterized the period after emancipation and beyond, into the discussions on how best to confront the oppression that was Jim Crow and its more modern incarnations.
And for us in the Autistic community, we are facing both some very positive and also some very challenging kinds of change. We know who we are now, in a way that we would not have 50, 75 years ago. We have this word – autism – that connect us, that brings us together and makes it possible for us to have meetings and get togethers like this. We know that we are not alone in this world – and that is a very important and exciting thing.
At the same time, because we know who we are there are also a lot of negative things that come from that too. The rest of the world doesn’t always respond to us the way that we would like to. Many of you here join ASAN and other disability rights groups every year at our Day of Mourning remembrance in March as we gather to mourn and speak the names of disabled people murdered by family members and caregivers. There are a lot of Autistic names on that list.
So in our new knowledge today, we have both great joy and great sorrow. I would argue that with those things comes an obligation to think about who we are and where we’re going to be in another ten years time.
There’s a school of thought that says that autism is exclusively medical. It’s something that’s between you and your doctor. There’s no real connection between Autistic people – we’re just all too different a group of folks. If we followed that school of thought, none of us would be here tonight. Many of us benefit from the help of doctors and medical professionals and service-providers, but we also see autism as something more than that too, as evidenced by the fact that we want to connect with other Autistic people about more than just the things that we struggle with. We want to connect about the things we have in common too – like our special interests, or how we interact with the world from a sensory standpoint, or how sometimes it’s easier to spend time with someone when you don’t have to worry so much that, “Oh my goodness! Am I making that right level of eye contact?” all the time.
And there’s another school of thought that says that autism is this unequivocally great thing all the time and look at all the dead famous people without history who we’re totally positively sure we can posthumously diagnose as Autistic. I think if you listen to some people every great figure in Western Civilization somehow manages to meet the DSM-5 and DSM-IV criteria, which seems a bit of a stretch to me, but there are some folks out there saying that. And I understand why some people try and make that stretch. A lot of that happens with every disability community. Sometimes I look at the lists of those who are posthumously diagnosed with dyslexia or ADHD and I imagine us sitting down at a table with those disability groups and saying, “Okay, okay, we’ll give you Thomas Jefferson, but you have to give us Jeremy Cavendish! Come on! That guy never made eye contact! I’ll tell you what – I’ll throw in Thomas Edison for free. We’re totally keeping Tesla though. He was our first pick in the draft.”
And this tendency, it’s understandable because we all want to have a sense of history, a sense that we come from somewhere. Like a lot of Autistic people, I engaged in this kind of posthumous diagnosing a lot myself as a teenager, in the years after my diagnosis. But in another sense, it’s counterproductive, not only because you can’t always prove it, but also because we shouldn’t have to be one of the great lights of world civilization in order to be comfortable in our own skin. We shouldn’t all have to be great inventors or intellectuals in order to feel like we are a People with strengths and challenges and part of a culture and a community that deserves to exist and grow and thrive. You don’t need to be Einstein or Newton to take strength from and enstrengthen the Autistic community.
So when I think about these things, and I try and think at a basic level as to what we are and where we’re going fairly often, I aim to look beyond both the strictly medical view of autism and even some of the ways in which we respond and occasionally overcompensate to that. I try and find a place in between those two poles – and I want to share what I see. It isn’t what everyone sees. I would never presume to tell an Autistic audience that mine is the only way to see autism or even the only way to see the neurodiversity or self-advocacy movements that so many of you in this room have worked as part of for many years. But I can tell you what Autistic community is to me. I can tell you what my neurodiversity movement looks like, confident that each and everyone one of you has your own and need not settle for mine if it is incomplete or incompatible to you.
I see a community that is going to be relating to each other very differently in ten or twenty years time. Most Autistic people who are in our community today were not born to Autistic people or at least not to people who know that they are Autistic. That’s not necessarily always going to be true.
There are always going to be Autistic people to families who don’t have any idea what autism is. But it’s also the case that most of us can look at our family histories and say, “There’s that parent or uncle or cousin who nobody quite knew what was going on with, and I recognize.” And what’s interesting to me is that in the next generation, you’re going to be that parent or uncle or cousin. And you’re going to know what’s going on – you’re going to recognize it in the next generation of Autistic children. Because of that, they’re going to get to grow up with something that we never had. They’re going to get to grow up with a sense of Autistic identity that acknowledges the challenges, but is also positive and affirming and supportive from the very beginning.
I think many of you know the depth of importance that finding your community carries. That’s why we all come to events like this. That’s why communities and cultures and groups are so important. We’re going to get an opportunity to bequeath that to the next generation. This is not just about how we’re going to have to more knowledge about autism for younger Autistic people. This is also about how cultures tend to build, through repetition, a growing sense of connection and comfort for those within them over time.
Next week, a lot of Autistic people are going to be celebrating something called Autistics Speaking Day. Autistics Speaking Day is this really cool holiday that started a number of years ago in response to a rather obnoxious fundraiser an Australian autism group had launched called Communications Shutdown, asking non-Autistic people to go stop using social media for the day to simulate “the silence of autism”. Of course we all know that we Autistic people never use Facebook or Twitter or anything like that!
The response to that, organized by grassroots activists in the Autistic community, was to get folks talking about their experiences. To talk about what it means to us to be Autistic. And we’ve kept on doing those things. We’ve kept Autistics Speaking Day going long past the demise of Communications Shutdown. These Autistic holidays do a lot of things for us. Sometimes, as with Autistics Speaking Day and Autistic Pride Day, they give us a chance to come together in our community and stand up for it in a joyful way. These holidays give us a chance to celebrate ourselves. Other times, we come together in order to be sad and to remember, as with the Day of Mourning vigils. But for either, the repetition, the opportunity to come together again and again in each year for a common purpose, a common mission, to see people, to see the same people, grow older and to learn and grow with them, these things help shape who we are and where we’re going as a community and as a People.
There is a lot of politics in the autism world. As many of you know, I am as responsible as anyone else for a lot of that politics. Many of you know that over the course of the last nine years, my work at ASAN has been focused on aggressively prosecuting the case for a certain sense of views associated with the neurodiversity movement in the world of autism politics. I have my own views on autism services, autism research and autism policy. As was mentioned earlier, I spend a lot of time working with those in the government around those views to try and turn them into policy. I’m proud of that work.
But I have to tell you, when I talk about Autistic culture and Autistic community, I’m excited about belonging to an Autistic community in which I share customs and events and spaces and a larger sense of identity and belonging with people who don’t agree with me or who don’t feel like they have to agree with one sense of politics in order to feel comfortable within Autistic culture. AAGW has always been a group that’s really brought together the DC Autistic community in a consistent way. You’ve always been a group that’s been focused on welcoming people in, in a big tent. I think we need more than that.
Some of you know that ASAN and AAGW are going to be working together as you prepare to become a tax-exempt non-profit, to help AAGW find more funding, more projects and more of the tools it is looking for to continue to thrive and grow. But I have to say, I’m also very excited not only for the chance to help you but also for the chance to see you guys help Autistic communities all over the world. I’ve been to Budapest, to London, to Israel, to Australia, I’m about to go to Germany, I’ve been to places all over the world and all over the United States and seen Autistic people coming together to do exactly what you folks have been doing over the course of the last ten years. Exactly what we’re all going to have an opportunity to do more over the course of the next ten years to come and many decades beyond that. I see people coming together to build a space where we can all feel like we belong, where we can all feel welcome. The Autistic community and the Autistic People are going to go great places over the course of the next ten years. So let’s hear it for AAGW and everything you have done to bring us here over the last ten.