Category: autistic culture

Autistics Speaking Day 2015: Our Autistic Future

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.

Rainbow and red logo for Autistics Speaking Day with the words Autistics Speaking Day Nov 1 2015 across the front 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.

Surviving Life in Exile

In the Birkat HaMazon (ברכת המזון– Grace after Meals), the prayer Jews use to give thanks to G-d after meals, there exists a section known as Harachaman (הרחמן – “The Merciful One”). In it, those gathered begin by describing G-d, the aforementioned Merciful One, in various complementary terms, noting that He “shall reign over us for ever and ever…be blessed in heaven and on earth…be praised throughout all generations, glorified amongst us to all eternity, and be honored amongst us forever and ever”.

After this, in the finest of liturgical traditions, it quickly transitions over to requests. G-d is described doing many things in this section, but I would like to call attention to one line in particular:

הרחמן הוא ישבור עולנו מעל צווארנו והוא יוֹליכנו קוממיות לארצנו

The Merciful One, who will break the yoke from our neck and lead us upright to our land

I do not know precisely when this line was added to the liturgy. It was present 115 years ago, in the 1900 edition of the Authorized Daily Prayer Book of the United Hebrew Congregations of the British Empire, but 115 years is practically yesterday in Jewish history. While I couldn’t tell you the origin of the precise line, it echoes a sentiment that is present in Jewish texts as far back as Exodus and Isaiah. It articulates two things – an acknowledgement of present day degradation and a faith in eventual improvement of the Jewish people’s collective condition.

Passages like this one have always moved me, and not only as a Jew. While my work has always been secular, I’ve always perceived my relationship to my Autistic identity as similar to my relationship to my Jewish identity. When I was a teenager and autistic people talking about our own experiences was still something that professionals scoffed at, I was attracted to the incipient autistic community in part because I already knew how to survive life as a member of a minority in an often hostile world. I already knew that doing this was impossible – except by finding solace and identity with other people like me.

I bring this up not only because of my fond memories of late nights at Autreat, talking into the early hours with a group only for us to suddenly realize over half the room had more than one identity in common. I think there are things that the Autistic community can learn from the Jewish experience in exile. While there is no Autistic homeland from which we have been displaced (despite the occasional creative attempt in the early years of the Autistic community to create a fictional origin mythos), a common theme of alienation exists throughout disparate experiences of autism. Isolation from the majority culture and struggling with the difficulty of surviving a world where people like you are often reviled and rarely understood are both near universal experiences in most autistic spaces.

When I first came to the Autistic community, one of the first things I noticed was the sense of joy that came from connecting with other people like us. I cannot begin to describe the simple pleasure of being in a space where you could rock or pace back and forth, flap your hands, write instead of talk, echolaile (if there isn’t a verb form of echolalia yet, that totally should be it) wildly well beyond any intended meeting and just be okay. Those who have experienced this in their own autistic spaces need no description. It’s a feeling, a sensation, and I cannot shake the sense that it felt like home.

This was not politics – because what is politics, if not an extension of our common desperation? It existed parallel to political discourse, born of our desperate circumstances but also an escape from them. It was first and foremost community, but the longer it persisted, it began to be more than that. With the passage of the years, it became continuity, even ritual: a most delightfully autistic repetition of certain patterns of interaction over and over and over again with sublime predictability. And with that, it also became refuge.

When you feel comfortable in your own skin for the first time in your life, it can feel revolutionary. More importantly, it can make it possible to live life in the absence of revolution. Writing in their history of the first autistic-run organization, Autism Network International: The Development of a Community and Its Culture, Jim Sinclair, the founder of ANI and one of the earliest people to talk about autism in either political or cultural terms, talked about the impact of this autistic space:

Many (but, again, not all) autistic people have felt the same sense of homecoming at Autreat that characterized the early meetings of ANI members in small groups. At the first Autreat in 1996, JohnAlexis Viereck stated, “I feel as if I’m home, among my own people, for the first time. I never knew what this was until now” (personal communication). This sentiment is so widespread among regular Autreat attendees that it was addressed in an Autreat workshop comparing the autism community to a diaspora (Schwarz, 1999).

I remember feeling like this at Autreat, not only because of the difference between autistic communal norms and the broader society, but also because of the continuity represented in autistic spaces. The chance to see the same people every year, participate in the same activities, have the same experiences, go through the same process of decompression and safe equilibrium in an environment of peers. These are all things that I miss about those kinds of events.

Repetition created community. This is of course perfectly fitting for an autistic event – but it is also how community is built in any group capable of growing beyond a small group of founders. The more you do something, the more it becomes imbued with special meaning. The thing is not just itself anymore. It carries the weight of all that came before it and all that could come after.

It reminds me of going to synagogue.

It reminds me of welcoming in Shabbat.

________

Shabbat Candles — An image of shabbat candles lit in front of a covered challah, kiddush cup and bottle of wine.

Baruch atah adoshem alo-keinu melech haolam borei prei hagafen (Praise to you, our G-d, Sovereign of the Universe, who creates the fruit of the vine)

Baruch atah adoshem alo-keinu melech haolam al natelat yadayim (Praise to you, our G-d, Sovereign of the universe, on washing of ones hands)

Baruch atah adoshem alo-keinu melech haolam hamotzi lechem min haaretz (Praise to You, our G-d, Sovereign of the universe, who brings forth bread from the earth)

The prayers wash over me, offering more than just thanks for a meal or communication with the Almighty. They help us cross over to sacred space, sacred time. It gives us a connection to everyone else speaking or who has spoken the same words. And the sense of being at home in these moments, with continuity to past and future, can give us the strength to face an often intolerant world.

I happen to be a believer, but these moments aren’t so much about G-d as they are about the community we find with each other. I know of many Jewish atheists and agnostics who continue to find this time meaningful independent of faith in a higher power. To paraphrase an old joke, those who believe come to synagogue to talk to G-d and those who don’t come to talk to the rest of us. Both are a part of my community.

When I travel abroad, I have found great joy in going to Friday night services in new parts of the world. Jewish life is very different in many parts of Europe, for instance, where it is not uncommon for a synagogue to be hidden away or for a security guard at the door to ask you a few questions about Judaism before allowing you to enter, to screen for those seeking to do the congregation harm. Still, there are some delightful similarities. I have sang the same words from the same liturgy in Washington, Budapest, Paris, Adelaide, Jerusalem and other cities around the world. Even the differences affirm connection, because they throw into more stark relief the common root from which such divergence sprang.

When I enter Jewish space – when I have access to sacred time – I am rejuvenated and I take strength. I know from where I come and to where I can find comfort in dark times. I have a home base, a foundation, and as a Jew I know that there will always be people who will share with me the moments of sorrow and joy that both persist in the Jewish historical experience. I can have hope that the world will be better for people like me, because I am part of an unbroken chain that will continue long after I am gone.

This is essential to living life in a diaspora. It is something that I have as a Jew, and it is something that I need more of as an Autistic person.

________

I have probably contributed to the politicization of the Autistic community as much as anyone over the last decade. I believe that this was necessary, and that we are now far more capable of protecting ourselves and our fellow Autistic people as a result. Still, I have certain regrets.

There are some things that are lost with the shift towards politics. Clausewitz wrote that war is the continuation of politics by other means. I have never seen war, but I can attest that the inverse is most certainly true. Political life is very much akin to war, especially for a people as frequently under siege with stigma, torture and misery as the Autistic people are. And in war, people take sides and turn every part of themselves towards mobilizing for victory.

They look for any sign of disloyalty, and seek to impose discipline and a vision towards a common goal. They make heroes and villains, and leave little space for exploration, confusion or mistakes. This is understandable, but it comes with very real tradeoffs. Communities that emerge solely out of political conflict reflect the worst realities of politics – the picking sides, the use of people as tools, the constant purity tests.

Looking back on the autistic community I remember as a teenager, I recall a certain communal spirit that seems less common as we have become more political. I would like us to find a way to get it back, and I think ritual can help us do that. Sometimes it was somber, a remembrance and solidarity that I still find every year at the Disability Day of Mourning. Other times it was playful, a willingness to poke fun at ourselves or develop elaborate games around special interests, stims or echolalia.

Color Communication Badges — Green, Yellow and Red Communication Badges, intended to allow event attendees to signal social interaction preferences

There was also a creativity there. All of us had our own accommodation needs, and we had to navigate ways to address them on more than just an ad hoc individual basis. Accommodation and accessibility were still new-ish concepts in the autism world, and systems developed that over time were just as much collective cultural norms as they were individual promises of equal access. Some of these things persist and have acquired new life outside of their places of birth. The Color Communication Card system, first promulgated at Autreat, has become commonplace at many Autistic community gatherings and has even begun to see adoption in the broader world.

In the last few years of Autreat, one of the things I found particularly interesting was the introduction of a new ceremony for children coming of age in the autistic community. Alliteratively called the Autreat Amazing Annual Adulthood Acclamation Ceremony, the ceremony was an opportunity for autistic young adults (and allies with a long history in Autistic community) to have their adulthood recognized and recognize mentors who had helped them in their communal experiences.

I never had the chance to participate in this as a young person, but having led one of the Acclamation ceremonies, I have a very clear memory of the meaning and power that it held for many who went through it. Like an autistic Bar or Bat Mitzvah, it affirmed the right of those who participated in it to be part of the continuity of the autistic community. I think we need more of that. More of the Autistic community’s time and energy should be given towards experimenting with these kinds of ways to build community, identity and continuity.

What comfort might it give us, to articulate words that countless others like us have said in the past and countless others may say again? To be part of an unbroken chain, reaching back from today into the far distant future? How might knowing that others before us survived them make our present struggles more bearable? How might it motivate us to further improve our condition, knowing that we can bequeath any benefits we win to those who come after us?

And how might ritual give us a chance to make promises, of what we might do and who we could be in a better world? Who among us hasn’t struggled to balance being true to ourselves with the demands of fitting in in a neurotypical world? Ritual and communal tradition does not just make living with the yoke on our necks easier – it lets us imagine a future where we stand free, and urges us to envision our lives in a world that accepts neurological diversity as natural, commonplace and respected. It can help create space for us to figure out who we might be, when a better day finally does arrive. And it lets us live with ourselves, until that day comes.

I have been playing with these ideas for a while now, mostly in my own head. It is difficult to talk about the limits of advocacy when you run an advocacy organization. 🙂 I continue to believe that the work done by ASAN and the political Autistic self-advocacy movement is indispensable. But I also know that it is not enough. We need ways to attend to each other. This isn’t giving up on politics – but it is an acknowledgement of their limits. We have other needs.

Diaspora is hard. We have to build a culture and identity that can acknowledge that while giving hope in a better future for our people. I believe this is something that may serve to unify the many kinds of autistic experience around something we can all hold precious enough to sustain us in dark moments. I hope to see more of it as the Autistic community and culture continues to be shaped and grow.