On the Grammar of Hope
Reflections on Autism and Public Identity
“The medium is the message.”
- Marshall McLuhan
It was only last December when members of the Autism community— individuals and families—turned on their televisions to discover a national tragedy that defied belief.
Twenty children and six adults had been senselessly murdered in an event that seemed beyond explanation. In the aftermath, a traumatized nation began to search for answers; and as the news media shifted its gaze from fad diets, celebrities and faux experts peddling pipe dreams of fame and fortune, our community soon found itself in trouble. Despite numerous studies that irrefutably indicated otherwise, the media began to consider the possibility that Autism Spectrum Disorder played a key role in the shooter’s motives. Soon enough, people on the Autism Spectrum across the country who were already frequent victims of harassment and bullying were now being psychoanalyzed on CNN as if they were ticking time-bombs, just waiting for the right moment to commence a similarly emotionless slaughter. All of the sudden, a time of national mourning that should have been about the shooting victims and their families—whose loss had touched the heart of every community in America, including ours— had become about us, and in the worst possible way.
Fortunately, this is not how the story ended. Indeed, thanks to the help of countless researchers, families, and self-advocates willing to put their experiences on display, the hysteria surrounding the Adam Lanza shooting has died down. But all is not well in the Autism community. Despite the breakthroughs ushered forth by the Americans with Disabilities Act, our society’s institutions continue to fail us profoundly. Across the United States, both private and “nonprofit” insurers are finding ways to deny access to medically necessary treatments that can have a profound impact on the future lives of autistic children. Meanwhile, those of use who are lucky enough to be diagnosed early face a public school system filled with teachers and staff who do not understand the nature of our challenges and often confront us with demeaning accusations of laziness or stupidity. Even when parents have been blessed with an economic situation that makes it possible for them take the task of educating the educators into their own hands, success can be very elusive for students with ASD.
For families affected who exist outside of this minority, the situation is even more disheartening. Unable to secure medically necessary treatments or services, parents try to make the best of a difficult situation and help their children as much as they can from home. But the enigmatic nature of ASD means that this is never as straightforward as it seems. Down the road, the enormous stresses of trying to handle the challenges of a complex neurodevelopmental disorder can be too much for many marriages to withstand, and families in this situation break apart at an alarming rate. Their children often find themselves in the maw of a foster care system that is often just as unprepared to deal with their challenges as their parents were. Between our society’s scant social safety net, and the yawning knowledge gap among educators and policymakers alike, these individuals often find themselves even more isolated, with many of them developing mental health issues as a direct result the depression and hopelessness instilled in them by their situation.
The tragic nature of the situation that befalls our community certainly begs the question of exactly what brought us here in the first place; indeed, on could probably spend a lifetime in pursuit of an answer to that question. But while the question of what got us into this position is complicated, the question of what keeps us here is not. Our community is plagued by cynicism and infighting. Across the United States—and perhaps the world— the Autism community is consumed with bitter arguments.
We argue over the symbols we use to represent ourselves. We argue over whether those of us who have been highly impacted are really as challenged as they seem or if they are really being misrepresented by malevolent and controlling parents. We argue over whether there is even a slight possibility that we can ever win over enough of the general population to make the lives for non-neurotypicals like us better. We even get in visceral and seemingly non-stop fights that take aim at the people and the organizations that are working to help our embattled community. Even exasperated parents are fair game.
It is in this fashion that an undesirable medium becomes an undesirable message—the message being that our values and our stories are but relative and trivial, and that we don’t in fact deserve to be treated or perceived any differently than any other members of our society. We all know this is not true. But this will not matter if we are so hung up on what divides us that we cannot educate the world about what draws us together. It is certainly true that because we bring with us a wide variety of experiences, there are—and will always be—disagreements as to the exact nature of what it means to be on the Autism spectrum in a world that all too often sees differences as liabilities and not assets. But so long as our society does not recognize the worth of those who think and communicate through unconventional means, we will continue to experience the gap in services that has plagued our community. It is one of the unfortunate truths of the human condition that while human dignity itself is innate, the perception of human dignity comes from stories— the kind of stories that permeate barriers and entice human beings of all shades to see a perspective as if it were their own. But our stories will never be audible if they continue to be drowned in the acidic chorus of our acrimonious dialogue with our peers.
Of course, it is true that there are narratives on ASD that have crossed into the consciousness of the general public. Indeed, if there is one thing that Rain Man, Sheldon from The Big Bang Theory, and Adam Lanza have in common, it is that they have defined the public image of who we are. But the late Kim Peek, the man upon whom Rain Man was based, was never diagnosed with Autism, despite the extensive battery of diagnostic tests underwent by his extraordinary mind. The creators of the Big Bang Theory have repeatedly denied that Sheldon’s character was inspired by ASD. And while it may be a long wait before Adam Lanza’s psychological file will be made public, the very idea that it was Autism that motivated his actions shows a profound knowledge deficit regarding the public’s understanding of who we are. It shares a common denominator with most other images of Autism in the public consciousness: a lack of any real connection to our community.
These misperceptions are not harmless. In the minds of our peers in work and in school, they can lead to everything from misunderstandings to bullying and harassment. In the minds of teachers, they multiply the difficulties of students who learn and see the world differently. And in the minds of our leaders, bring forth bad public policy that magnifies the challenges that I have mentioned above. I need not ask you to imagine a world in which we must suffer the consequences of being branded with public images that do not accurately reflect who we are or what experiences we bring to society. We already live in such a world.
All of this begs the question of what one can do. To answer this question, I personally draw inspiration from the civil rights movement— where a population that had once been repressed in the worst sense of the word gained recognition as being part of the very fabric of America. How did they get from there to here? It took the stories of crusaders for justice like Martin Luther King and Frederick Douglas. It also took the work of musicians like Miles Davis, John Coltrane and BB King, poets, artists, the musings of great intellectuals as well as the tales of the everyday lives of the people who knew well the yoke of oppression. It took the “I Have A Dream” speech on the steps on the Lincoln Memorial, and “Guess Who’s Coming to Dinner.” It took stories, and the courage to tell them to an audience that could not have been more hostile. Racism remains very real in many parts of the country, but the narrative has changed—and with it, the fortunes of Americans who had once been regarded as property and not human beings.
There can be no that doubt our experiences provide ideal substance for narratives that cross cultural and social geographies. Some of the most moving and profound observations about society come from people with whom it has a complex and convoluted relationship; and the struggle for civil rights is a case in point. However, the content of our stories—and the relevance of our insights—will cease to matter so long as they are conveyed within the context of our conflicts with each other.
Simply put, our community’s fixation with friendly fire must end. It is not a coincidence that the self-advocates themselves have been the worst perpetrators of this damaging practice. No one can experience life as an “other” and remain unscathed. There are few stigmas harsher than the recognition that you are someone who does not communicate in the same capacity as the general population does. It makes employment harder. It makes real friendships more infrequent. It affects our emotional lives profoundly. It complicates our efforts to navigate the educational establishment, which remains deeply intolerant of people who work and think in ways that are against the grain. These are realities that have defined our lives as people who are dealt a difficult and unconventional hand— one that involves learning the unacknowledged truths of the world from the ground up.
Though these are nearly universal themes among us who are on the Autism spectrum, this does not mean that they manifest themselves in the same way in every individual. For this reason, there will never be unanimity on every principle, word or symbol of AS, because the story of autism is too complex and too profound to be told by one voice. It deserves to be told in many ways by many voices, political persuasions, cultures and perspectives. It deserves to be told by individuals with ASD as well as parents and siblings who have sacrificed so much to improve the lives of the people they love. Certainly, there are trademarks; puzzle pieces, Greek characters, graphical representations of brains. The label of ASD is itself is a trademark of the psychological establishment and its ever-fluctuating lingo. But the story of ASD does not belong to any institution, formal or otherwise. It belongs to each and every one of us.
So if the character of our stories is what unites us, then the way out of this mess is to start telling them. Tell your story to the people you respect. Tell it in your neighborhood. Tell it to your classmates and the coworkers you trust. Tell it in the halls of power. Tell your story in your own way, as only you can, in a way that shows respect for others whose stories are almost certainly different than your own. We are dreamers, artists, outcasts and intellectuals— we are different, disabled and gifted, parents, siblings, sons and daughters, but what unites us is that must learn to become our own ambassadors to a world that desperately needs to hear what we have to say. Not all of us can become activists or wade into the details of public policy, but every single member of our community should tell his or her story.
I understand and empathize with the difficulty that many of you will have in fulfilling this request. It is never easy to discuss a neurological difference that has affected your life so profoundly, regardless if it is you or someone you love. It is not easy to find the right way to tell it, either. All I ask is that you try.
I should note that as the stories of our community begin to emerge, it is possible that some of us will treat them with an attitude of disbelief. However, it is rare to find someone who would assume the mantle that we bear by choice. For this reason, we really have no place doubting the intentions of our peers for whom things have become so bad that they have taken the personal leap to act. But while the issues we face may have made it extremely difficult us to treat each other in a way that does not reflect the way that we have been treated by society, it is precisely these problems that make it as important as ever that we focus on the many things that unite us instead of the few things that divide us. It is when communication is most difficult that it is most desperately needed. We are all in this together, after all.
My friends, as someone who has personally helped fight public policy battles on behalf of the Autism community, I have to deliver some bad news. We have been out-fundraised, outnumbered and outgunned, and while we have been consumed with defining each other, the rest of society has been defining us. But the secret of public policy is that to win minds, all you need is a message. Let us thus abandon our squabbles and our infighting, and join together so that we may take control of our public identity and achieve real victories that may improve the journey—for our families, for ourselves, and for future generations.
With that, I will leave you with my own story.
….
I have always been fascinated by history, politics, religion and art, believing them to be intertwined. My obsession with these subjects, and the questions they pose about humanity, constitute the fabric of who I am. At age seven, a psychologist at Seattle Children’s Hospital diagnosed me with severe Asperger’s syndrome—a discovery that in many ways has defined my life, as I have struggled to learn to communicate in a way that bridges the gap between the general population and myself.
I remember well the anger I felt when my first grade teacher took my inattention for a lack of motivation and decided that humiliating me in front of my peers was the best way to get me to learn material that I had figured out ten minutes into his lecture. I know what it’s like to be dismissed by your classmates as a freak and a persona non grata simply because I did not understand how to dress and act in a way that they understood. I’ve been physically assaulted in a public swimming pool. I’ve had fair weather friends who liked me in theory but abandoned me when the “cool” kids, believing me to be an idiot without feelings, decided that I was an inviting target.
Despite these challenges, I made it to college, eventually graduating with an award from my department, a feat achieved thanks to a loving family that worked harder than I could ever describe to help me along the way. I now earn my living in public affairs, which is more than just a line of work. Though there are aspects of my profession that come naturally to me, the social nature of the field has made my career the most challenging undertaking I have ever done. I’ve had friends and acquaintances, lovers and enemies, romance, elation, depression and heartbreak.
Seeing where I am at this stage of my journey, it may never occur to the people I meet just how hard it was to get to where I am today. But my challenges remain very real, and despite my progress the question of what is and is not possible remains a complicated one. Though I cannot say where my road will end, I have vowed never to forget where it began, in the hopes that someday I may ease the journey—for myself, and for those who come after me.
Too often ours is a lonely path to tread. But it does not have to be this way. If we must swim upstream, then let us swim together.
In love,
N.S.B.
On behalf of Washington Autism Alliance & Advocacy