[image description: looking out into space from planet Earth during daytime. In the upper left corner of the picture, tree branches are silhouetted against an ethereally glowing sky. The late morning sun is hidden behind a low-hanging bank of clouds, illuminating them against a sky that ranges in intensity from clear aqua to dark lapis. Photograph copyright 2016, Sparrow R. Jones, Taken in southeastern Gainesville, Florida.]
I winter in Florida, because it’s warmer and where my mailing address is. Although I am nomadic, my official state of domicile is Florida.
I winter in Gainesville, because the city has laws to protect people like me. So long as I am legally parked, it is not against the law for me to sleep in my vehicle in Gainesville. This may seem ordinary if you’ve never tried living the way I do, but most clement places enact measures to keep “undesirables” under control. Every major city in California now has anti-homelessness laws on the books that were written to protect the people who do not like to see homeless people in public (rather than being written to protect the actual homeless people, themselves.)
If I wintered in California, I would regularly be at risk of having my van impounded as punishment for living in it. I know, I know. It makes no sense to fight homelessness by taking away someone’s shelter. But it’s a real risk in many places. As for Texas, I have been hassled by the police after spending 18 hours at a designated campground. I’ve never been bothered here in Gainesville for openly living my mobile lifestyle.
Gainesville is also a safe place to transition my gender expression. The mayor of Gainesville, Lauren Poe, recently wrote on Facebook: “If you are trans and feeling under threat, come to Gainesville. We respect you, love you and if need-be, we will protect you.” In a nation that seems obsessed with which bathroom I use, it is a great comfort to spend my winters in a city that added “gender identity” to their anti-discrimination laws in 2008. Gainesville is a safe place and I can feel my spirit grow when I spend time here.
This winter, I read (in audiobook format) Andrew Chaiken’s epic 1994 book about the Apollo missions, A Man on the Moon, as I drove around Gainesville’s streets filled with murals and quirky folk art. When Mr. Kitty and I take a night trip down 8th avenue, through the Solar Walk, I like to imagine that we are traveling through space in our Escape Pod. The sculpted concrete stars and planets on the sidewalk beside us are heavy echoes of the originals, gleaming high above. We are surrounded by stars.
It was on one of those night runs down the Solar Corridor that I realized my current life motto: What would an astronaut do?
I have been on a quest the last several years to improve my emotional self-regulation. I have progressed tremendously as anyone close to me will readily attest. What would an astronaut do? An astronaut would remain calm, particularly in a crisis. An astronaut would not give up when faced with a problem, but rather think things through, logically and carefully, finding tools in his environment to achieve his goals.
The Apollo 13 mission nearly ended in as much tragedy as the Apollo 1 mission. A cabin fire in Apollo 1 killed all three astronauts — Grissom, White, and Chafee — on the launch pad in 1967. For a time, it appeared that the pilots of Apollo 13 — Lovell, Swigert, and Haise — would suffer a similar fate after an oxygen tank exploded, two days out from Earth, damaging the Service Module, thus also rendering the Command Module useless. The interior of their spacecraft began losing life-sustaining heat quickly, water was in short supply, and the astronauts were at risk of asphyxiation from their own exhaled carbon dioxide.
What would an astronaut do? Get on the radio and calmly announce, “Houston, we have a problem here.” Troubleshoot the problem along with help from Houston. And build a carbon-dioxide scrubber out of a flight manual cover, parts from their space suits, and a pair of socks.
I have been working to incorporate the lessons of the Apollo astronauts into my daily life:
Maintain logic and problem-solving skills such as flexible thinking and improvisation.
Focus on the mission.
I’ve particularly been spending a lot of time thinking about what it means to focus on the mission.
Focusing on the mission means that the activism and advocacy work we Autistic adults and non-autistic parents of Autistics are doing is more important than interpersonal squabbles. Sometimes we have goals so incompatible that we cannot work together, but whenever I am seeking the same goal as someone else, it is important for me to promote their work, no matter whether we get along as individuals. Focusing on the mission means trying to get along with everyone, but also staying socially detached enough to avoid allowing my feelings about a person affect my respect for their work.
I was writing something the other day, in which I mentioned “my mission.” I have been thinking about my mission for a long time and, more and more, I have been wanting an actual mission statement. I talk about being on a mission, but I don’t always communicate that mission in specific, clear terms.
So I would like to take this opportunity to share my mission statement:
All people have inherent worth; human life cannot be valued in the coin of productivity. What makes people matter is that they exist.
There are no “special needs.” All humans have needs and by calling some needs “normal” or “ordinary” and other needs “special,” we set one group of people aside as potential “burdens” who should be grateful for the “special treatment” they get.
Access is crucial for full participation in society. The principle of universal design must be extended to all, making all public access accessible to people regardless of mobility, neurotype, physical appearance including race and size, gender, communication style, support needs, and more.
Respect autonomy and presume competence. The children of today must not be forced to suffer tomorrow the things we endured yesterday.
I yearn to hand an oxygen mask of survival and a flotation device of self-worth to every human being. I can only achieve this work if I keep one oxygen mask and one flotation device for myself.
My mission is to work every day to maintain my own survival so that I can help others maintain theirs. My mission is to add more love to and remove more stigma and misunderstanding from the world. My mission is to join every day in the effort to shift society’s views to a more compassionate, understanding, accepting position from which diversity can truly be celebrated rather than feared.
This is my mission and every time I ask myself, “what would an astronaut do?” and the answer is “focus on the mission,” this is the mission. This is what I am striving to draw more of into my life and, through me, into the world: more love, more understanding, more thriving.
And now I must carry on with the mission. Do carry on with yours and insofar as our missions intersect, may we always merge our efforts and achieve greater success than we each could have grasped alone.
This is a re-post of a blog post that was originally posted on January 13, 2014. It has been slightly edited from the original: I have come out as transmasculine since this essay was first published and so I have changed my pronouns in the essay accordingly. I have also added a clarifying side note to make sure readers know that I do not believe any human being at all, ever, is a tragedy!
[image description: A green bordered meme tile for #boycottautismspeaks and #PosAutive Action for Social Justice that quotes this essay, saying “My life is far too complex — and far too beautiful — to ever be mistaken for a tragedy.” – Soarrow Rose Jones]
I am a person who tries my hardest to give everyone the benefit of the doubt. I realize I have a strong streak of suspicion in me, so I aim for the best possible view of others and attempt to judge them innocent until proven guilty.
Lately, the organization named Autism Speaks has worked really hard to provide me with that proof. Exhibit A: The “Call to Action” by Suzanne wright (the co-founder of Autism Speaks) that said that I and those like me are unspeakable horrors to our families who live in despair and depletion, ill and broken, because we are so awful to cope with. Exhibit B: the latest documentary film from Autism Speaks, titled, “Sounding the Alarm.” For an organization that tries to claim they are not alarmist, that is a pretty fishy film title, right?
Those of you who have followed my blog for a while know that I was an incredibly difficult child to raise. I’ll be honest: I pretty much did deplete my mother (although she has bounced back quite beautifully these days.) And you know I’ve had a hard life, with bullying, abuse, poverty, homelessness, and chronic unemployment. But you know what else? I would estimate that 90% of my difficulties in life were not caused by being born Autistic — they were caused by other people not coping well with who I am. People who don’t like the way I move, the way I speak, the things that catch my interest end up pushing me and bullying me and excluding me in ways that make my life miserable. Most of the “tragedy” of my life was completely avoidable if everyone around me had been encouraged to be a little more open-minded and discover the incredibly loyal friend or the hard-working and dedicated employee behind the quirky behavior and different way of viewing the world.
You see, my life only becomes a tragedy when someone else chooses to frame it that way. And that is objectifying toward me and people like me and I will explain to you why I feel that way.
Human beings — at least those living in industrial “Western” culture — have basically two ways to view lives. There are lives, plain and simple. These are what they are living, what their friends and family are living. Regular lives have ups and downs and long, welcome stretches of “boring” everyday stuff. There is no overarching framework because they aren’t stories; they are lives.
Stories are the other way to view lives. We view imaginary lives that way all the time when we watch television and movies. We also frame certain people’s lives as stories when we write about real people in books or magazines. Stories do not have long stretches of everyday “boring” regularity, because stories are about heroes and villains — stories are drama and drama is shaped by our theatrical forms that box everything up as Comedy or Tragedy.
You’ve seen the masks, right? The iconic symbol of the theater with one mask laughing in hilarity and the other weeping openly. This is how we frame stories and this is why people who want to box me up and objectify my life so often strip all the complexity out of my “story” and try to fit it into comedy (“look at that ridiculous ******!!”) or tragedy (“Poor thing, he’s so pitiful. It’s inspirational to me that he even gets up every morning and goes on living day after day!”) People who want my life to be a story and not just a life are required to objectify me and amputate most of my actual life to get the essence of me into that little box they need to put me in so they can make their point.
Autism Speaks’ point is that autism is evil, Autistic people are a tragedy, families of Autistic people are broken on the wheel of autism . . . oh, and give us lots of money. They try to claim that I can’t be upset about the things they say because they aren’t talking about me, they’re talking about “those Autistics.” You know, the cardboard cut-out caricatures of Ultimate Tragedy that never mature beyond infancy and thus grow up to be Useless Eaters and Burdens to Us All. I am “too high functioning” (meaning I continued to grow and develop and change throughout the course of my life and am now able to type words and lift a spoon to my mouth unassisted) and I am not who they mean. (side note: No Autistic person at all ever is that reductionist tragedy. We all grow and develop and strive to flourish in our lives. None of us are a one-dimensional tragedy, regardless of who we are and how our humanity manifests.)
Well, if they aren’t talking about me, they need to stop counting me in order to make their massive “tsunami” declarations of millions and millions of us who are struggling and suffering (unless you give lots of money to Autism Speaks, of course. That will somehow magically stop our suffering . . . . well, no, it won’t. So they need you to give them some more money. Don’t stop yet! There are still MILLIONS AND MILLIONS of Autistics out there! Tragedy! Alarm! Crisis! Pandemic! . . . keep that money coming.) If there are so many millions of us, then they *ARE* counting me and people like me so how dare they say I have no right to be distressed by their rhetoric about ME?
Would you like to know how *I* read the story of my life?
Sure, there are hard times. I struggle a lot. But I also accomplish and achieve a lot. I would like less struggle. I would like a LOT less struggle. But I would not like no struggle at all, because having something to push against adds to my strength. I want to have some challenges so that I can have some accomplishments. I want to have some difficulties so that I can have some growth. As Robert Browning said, “a man’s reach should exceed his grasp”. I would like my grasp to come a lot closer to my reach (wouldn’t we all?) but I want there to always be something just brushing my fingertips, tempting me to press on. I never want to fulfill all my dreams, unless I grow new dreams in the meantime. I want there to always be someplace new to go, something new to strive for. I would like those things to be new skills, new arts, new travels and people. Right now, some of those ungrasped things are more fundamental. Right now, some of those ungrasped things are unmet needs, not unlived dreams. There are hard times and things I would like to improve, but that doesn’t make my life a tragedy.
If I had to define my life in one word, it would not be “tragedy.” It would be “joy.” I have an abundance of joy in my life. I have always had joy in my life, even during the hard times. I believe I could be left sitting in a garbage heap and manage to find something beautiful there.
Suzanne Wright painted her picture of what our lives are. Let me paint a few vignettes of my own, one, single, Autistic life:
It is summer and I am walking. The brush is scrubby and dry and tiny black-and-white checkered lizards bake in the sun on flat rocks. Raptors wheel high in the sky, nearly invisible against the glare of the sun. The trail I’m on dips lower, into a grove of evergreens, and suddenly I am wrapped in the sound of scores of little birds, singing in the trees. A swarm of dragonflies seemingly materialize from nowhere and I stop walking, transfixed by the beauty of the sun glinting rainbow sparks from their diaphanous wings as they circle lazily around my head.
I am tucked away in a dusty corner of the library, reading. What am I reading? It must be a comic book of some sort, because I read intently, then suddenly burst into laughter, nodding my head and shaking my hands with excitement and happiness. Then I go back to intently reading with furrowed brow before bursting again into childlike laughter. Curious to see what is causing such reactions in me, you draw nearer to discover that I am reading a collection of dozens of mathematical proofs of the Pythagorean theorem. That beautiful moment when all the pieces fall into place is so glorious and profound to me that I am helpless to do anything but laugh with delight when I get to that point in each mathematical proof.
I have a new musical instrument and I am exploring the sounds it makes. I am comparing it to every other type of instrument I have played before — and there are many — to see how it is similar and how it is different. Within five minutes, I play my first simple song. Within five days, I am playing as if I have been working with that instrument for months. I do the same things with languages — writing letters and poetry in grammatically correct Swedish three hours after I opened the parcel containing a Swedish-English dictionary and began studying the sentence structure of the language. I do the same thing with anything that is based on patterns because I am a pattern thinker. I do not think in words. I do not think in pictures. I think in symbols and patterns. Any process or thing that succumbs naturally to pattern thinking is an easy delight for my pattern-seeking mind and heart.
I am exhausted, so I lay down to listen to music and maybe sleep for a couple of hours. My cat gets excited to see me recline because I am creating his favorite place in the whole world — I am becoming his cat mattress. He runs to me and climbs on top and we adjust ourselves to find the spot of maximum comfort for both of us, the two of us so in tune with one another that words are unnecessary. We go beyond communication; we commune. I wrap my arms around him and bury my face in his kitten-soft fur and he purrs and wraps his paws around my head. We lay there together, two souls breathing as one, rejuvenating each other with the priceless love and trust that connects our gentle spirits.
This is my life. This is not a tragedy. I am not a statistic. I am not a pawn to be used to manipulate you into giving money to a charity that gives about 4% of its income to actually helping Autistic people and our families and gives 44% of its income to researching ways to wipe me and my kind off the face of the Earth. (And another 22% to fundraising efforts that paint us as a tragedy so that they can bring in more money to find more ways to create a world where people like me are extinct.)
My life is not a tragedy. My life is far too complex — and far too beautiful — to ever be mistaken for a tragedy. This is why Autism Speaks does not speak for me. I am Autistic and I can speak for myself. (And on those days when I can’t, I can write for myself. And on the days when I can’t even do that, I’m still not a tragic pawn to be moved across the board of someone else’s political and financial agenda.)
I am not a horror. I am not a destructive force. I am not a tsunami or an epidemic. I am a human being, living my complex, messy, sometimes boring, sometimes gloriously beautiful, everyday life.
My life is not a tragedy. I am a human being and we are too complex to be reduced to such abject objects. See us . . . really see us. We are priceless beyond measure. We are not tragic. Please do not assist any person or organization in attempting to reduce our beautiful and complex lives to little more than a theatrical stage show.
[image description: a black and white tuxedo cat lounges sleepily in the sun on a plywood table inside a minivan, with bright blue sky visible out the window. The cat is viewed from below so all the viewer can see is his little face and his legs sprawled out into space, darling little toe pads at the end of his soft feet. Photograph copyright 2016 Sparrow R. Jones]
I want you to be happy.
You have been weighed down for too long with cares and concerns. Your body has been heavy with worries for the future and your heart races with fear. You feel like you are clinging to a cliff and your fingernails will give way any moment. You just can’t see how anything will end well.
I’ve been there. And I’m not talking about the distant past. It’s a cold, dark pond I go wading in on a regular basis, this murky fear and muddled worry. The things that weigh my limbs down, paralyzing me with fear, might be different from the things you are being dragged under by, but we both know that pond pretty well, right?
But I want you to be happy. I want us both to be happy. I want all of us to be happy. That’s part of why I’m still here, treading water. I know I can help if I can just keep my own head above the surface long enough. I know I can help you be happy. And if I succeed, I know it will help me to be happy, too.
But what is this happiness I’m talking about? I see a lot of cynics shooting down the very idea of happiness as some kind of bliss-ninny fantasy completely divorced from reality. “I don’t go around grinning all the time. Happiness is a lie,” they say. “Being pleased with my work is the best thing I could hope for. I hate the word happy because it’s just an illusion to dangle in front of people to try to control them.” “Happy? That’s some future that will never come. Don’t talk to me about happiness.”
It took me a long time, myself, to understand what I mean when I say happy. I haven’t had a lot of happiness in my life, so even understanding what it is has been a challenge for me. I was born into a family that had already established a long history of abuse before I ever hit the scene. I was hit, insulted, set up, molested, kicked, and hit some more. I was blamed for everything that went wrong in my life, including those things other people chose to do to me. Less than a decade into life, I watched my brother lose his battle with cancer. Many more years of sexual and physical abuse followed me out of the family home and years of homelessness were capped by watching my daughter die the day she was born. By that point, life had been so hard for so long that I wondered if she weren’t the luckiest one of us all, getting to take a pass from the mire we all work so hard not to drown in.
Life is still hard for me. I am houseless — I would call it homeless, but I made a conscious decision to live in my minivan and I prefer to save the word ‘homeless’ for those who didn’t ask for the burden and are treading water harder than most of the rest of us because they ended up in such dire straits. I am poor, but I am slowly building income from my work and hope some day to be completely self-supporting. In the meantime, I am so grateful for the SSI benefits that keep me alive and above the waterline. I am lonely, but again that is by choice. I wanted to be able to travel around to try to spread a message of love and autism acceptance far and wide. Loneliness is just part of the ticket cost of this glorious ride.
But I am beginning to see happiness and just starting to understand what it’s made of — for me, anyway — and I am learning that it is not some kind of constant overwhelming joy or even a huge grin. It’s something deeper and more solid than ephemeral emotions that drift across the surface of my being like stormy waves or sunny seas. When I talk about happiness, I’m talking about something deeper than being pleased at a pretty birthday cake or excited to see a loved one again. I’ve come to a point where I no longer even think of happiness as an emotion.
When I was seventeen, I landed in a mental hospital for a time. While I was there, a family friend gave me two books to try to help me sort things out. One was a Thomas Merton book and it was interesting and soothing. But the other, an Alan Watts book, went straight to my bones. Since that time, I return to Alan Watts regularly. He barely had his own life together at all — many would say he didn’t have his life together whatsoever. He was a lifelong alcoholic who died at the relatively young age of 58, most likely from a heart condition and the complications of alcoholic excess.
Alan Watts is what Jungian thought calls a wounded healer. The ultimate wounded healer in mythology was Chiron, the centaur who received a fatal wound from a poisoned arrow but, being immortal, could not die. Instead, he suffered tremendously and, unable to heal himself, gave up his immortality and died. Zeus could not allow such a healing teacher to pass away from the world entirely and so promised that as long as Chiron’s wisdom is needed, his teaching will live on.
Alan Watts is a Chiron for me. I was only six years old when Watts died, but he left behind words that still teach me about life. Listen to what Watts says about happiness:
I have found happiness in vocation. Watts talks about finding that thing that is yours to do, “because you would do that thing whether it paid you very much or whether it didn’t. Because that’s the one thing you have to do.”
For me, happiness is not about smiles or laughter or excitement. Happiness is about having finally found the place I am supposed to be and the thing I am supposed to do — the thing I could not stop doing. As Watts says, “I am a writer; I have to write, whether it makes me money or whether it doesn’t, I would still have to be a writer.” Happiness comes from doing what one is shaped to do and could not do otherwise. Happiness comes from being that which is inevitable.
I see this in some of the parents I know. They are very clearly living their dharma by growing strong children into adults who do not doubt their inalienable right to exist and thrive, to love and be loved. Although the bills weigh heavily and the future looms and they are not sure how their child will continue to live and eat when they have shuffled off this mortal coil, they are living their dharma and they are happy. They are focused and they are doing exactly what is theirs to do.
The Autistic Happiness Project is not about birthday parties with ponies and balloons. It is about this happiness of dharma — the happiness that comes when every Autistic feels to their core that they are where they should be. That means the Autistic Happiness Project is as well-suited for fighting depression, abuse, and injustice as it is for celebrating the beauty of infinite human diversity in infinite combinations.
I want you to be happy. I want you to feel your immeasurable worth. I want your feet to be firmly rooted in the unshakeable confidence of your place in this world. I want you to find your dharma and become so immersed in it that hours pass like minutes.
Does happiness mean you will never again feel the cold water closing around you? No, because finding your place in the world does not make the world go away. But a deeply-rooted happiness will remind you why you keep treading water. A strong and solid happiness will feed your will to keep swimming, even when it seems the shore is receding. This is what my happiness gives to me: a determination to keep dog paddling through the darkness because I need to continue doing that thing I am shaped to do. My dharma awaits on the shore and that keeps my head up and my limbs moving. That is what happiness means to me.
My nametag as Keynote Presenter at the Autism and the Pursuit of Happiness Conference
This is a re-post of a post from February 13, 2016. What follows is the complete text of the keynote address I presented at the Autism and the Pursuit of Happiness conference. This conference was significant for me because it helped me realize my mission: spreading Autistic Happiness.
As a result of that realization, I launched The Autistic Happiness Project. If you would like to become a patron of my work to help increase the amount of Autistic Happiness in the world, please have a look at my Patreon Page:
The text of the presentation is below, or you can watch this video of the Keynote Presentation, with CC subtitles:
AUTISM AND THE PURSUIT OF HAPPINESS
Today I presented at the Third Annual Autism and the Pursuit of Happiness conference, hosted by Empower Autism. Asheville, North Carolina, has become one of my “spiritual homes” because it is a beautiful, laid-back city with a vibrant and thriving Autistic community, thanks to the tireless efforts of more people than I could count.
Despite the cold temperatures and snow (my nemesis!), I feel so blessed to have been able to participate in this terrific conference. The organizers were welcoming, friendly, and meticulous in seeing to every detail to maximize the comfort and safety of us Autistic presenters. My fellow presenters are an amazing, wonderful, honest and lovely group of people. The audience was attentive, eager to hear what we had to say, and approached the whole event with open minds and open hearts.
I was asked by more than one person if the text of my presentation would be available online. I promised I would put them in my very next blog post, so here it is. Also, most of the conference was filmed and I will have a video of this presentation at some point in the future, although the specific date is an unknown to me.
I hope you enjoy my transcript and I look forward to being able to share the recording with you all soon.
Autism and the Pursuit of Happiness, Keynote Address, February 13th, 2016
What is happiness? We are bombarded with messages every day addressing that question. The answers range from the classic white picket fence family with two children and a dog to owning the perfect shade of lipstick or sports car to savvy investments to eating a decadent ice cream treat. Happiness is promised in advertisements nearly as much as sex (which is also a culturally approved route to happiness.)
But with all of our culture’s near obsession with happiness, who is talking about Autistic happiness? I hear so much talk about therapy and meeting milestones and being table ready. Socializing with one’s peer group and developing coping strategies. Addressing medical needs and finding good solutions for people with high support needs as their parents age. So many important aspects of autistic lives are discussed every day, but who stops to ask if we are happy, fulfilled, and enjoying our one and only precious lives?
Today we are the ones who will talk about Autistic happiness. You will hear from people discussing elements of happiness such as self-acceptance and love, harmonious family life, sexuality, empathy, relationships, and more. Today is the day we answer back to society and talk about our Autistic views of happiness and its pursuit. Today we do not wait for society to tell us what will make us happy. Today we take charge of our own lives and we will tell society.
Autism is filled with happiness. Our joy is like a bubbling spring that comes from deep within the earth, from deep inside of us. When that spring is allowed to flow, our happiness is visible, palpable. We are, like all humans, born to rejoice.
Happiness is when everything is arranged by color and size. Happiness is when the last number fits and the puzzle is perfect. Happiness is when a special, trusted person is near. Happiness is a feast for the senses that is just right, not too little, not too much. Happiness is a delighted squeal, a flapping hand, a leap, a twirl. Happiness is the gentle sawtooth edge of a cat’s purr. Happiness is the sparkle of water, the tickle of shifting sand, the squish of mud. Happiness is emptying the can of shaving cream and the entire roll of toilet paper just to see how they look and feel.
Happiness is when the hard things get accomplished. Happiness is feeling competent. Happiness is learning new paths to success. Happiness is making and keeping friendships. Happiness is being able to help others. Happiness is sharing the things we love, talking about them, words tumbling out of our mouths like carbonation. Happiness is not talking, holding words and thoughts inside and not being required to dilute them by sharing them with others who might not get it anyway.
I often describe myself as a fundamentally happy person. Happiness is my default state. It surprises me when others do not agree with that description, but one day I realized that the people who do not connect with the idea of me as a basically happy person are the people who rarely see me happy, often because they, themselves, are sources of unhappiness in my life. It has taught me to re-examine my relationship with anyone who does not share my view of myself as being a naturally happy person.
That was such an important revelation for me. You see, happiness comes first from within, but the things and situations and people we are surrounded by can amplify or squelch our happiness. This is true for everyone, of course, but experience and observation suggests to me that we Autistic people are much more vulnerable to the input or interference of others for many reasons. We have to protect our precious happiness from those who would steal it from us. And it’s hard, because not all of our happiness thieves are intentionally stealing our happiness. Some are even trying to increase our happiness, but in misguided ways that end up accomplishing the opposite effect. Others decrease our happiness because they weren’t even thinking about us or they weren’t thinking about us in supportive, understanding, and nurturing ways. So it’s not just about looking for the bad people, because a lot of very good people can diminish our happiness without ever intending to. They can drain our happiness away so innocently that they are as confused as we are about where our happiness went and why it has gone away.
So we develop shields to protect us – and sometimes those shields are helpful but sometimes they block out new happiness along with the risk of losing the happiness we already have. And we look for happiness allies, people who love to see us happy and do what they can to foster our happiness. In return, we can seek their happiness as well. Because one beautiful thing about happiness is that it can build on itself, spiraling upward higher and higher, just the same way that misery can twist backward on itself, spiraling us further down into the depths of despair. But it is much more wonderful to soar higher and higher on updrafts of happiness, so we seek out our happiness companions and help one another learn to fly together.
At a conference dedicated to the pursuit of happiness, it feels contrary to talk about the things that inhibit or diminish or even crush happiness, but it is an important part of knowing what something is to understand what it is not as well. The darkness that snuffs out happiness can reveal the shape of the light that happiness is. Understanding those things that we Autistics are trying to shield our happiness from will help others to add their strength and love to our shield walls. Understanding the enemies of happiness helps us avoid innocently becoming one ourselves. Our goal is to help everyone to drink fully from their personal springs of happiness, chasing away the things that drill holes in us and let the happiness drain out until our buckets are empty.
So often, it is a balancing act. For example, loneliness can empty a person’s happiness bucket. Loneliness is different from being alone. Being alone can be soothing, familiar, friendly. Loneliness is when we feel forced to be alone. Loneliness is isolation and alienation. In loneliness it is easy to forget that we are loved and lovable. It is easy to forget that we are not alone.
But loneliness cannot be eradicated simply by being around other people. I don’t know about you, but when I am around the wrong people I feel far more isolated, more alienated, and more alone than I do when I’m by myself. Well-meaning friends, family, and therapists have encouraged me to “put myself out there” when I’m feeling lonely and low. It is the universal remedy to loneliness and depression after all.
For years, I marveled because that advice really does seem to work for some people but it didn’t work for me. When I am lonely and I go someplace where there are people, I feel worse. At first, I thought it was just me – a sign that I was hopelessly broken. Then I learned that I am Autistic and I decided for a while that it might be an autistic thing – being around people helps make loneliness and depression better, except not for Autistic people. But now I realize that’s not the full truth, either. The reason we are advised to go out in public when we are depressed is that connecting with people is what helps us feel less lonely and less depressed.
The more difficulty a person has in casually connecting with people, the less helpful the advice to “put yourself out there.” Being with others helps Autistic people feel less lonely and depressed, too, but we have to be more careful about who we choose to be around when we want to feel less lonely. Being around people who don’t understand us, people who blame us for things that are out of our direct control, people who laugh at our differences, people who treat us like children even if we’re adults … and, honestly, let’s face it, even children don’t like most of the ways that children are treated … these people will make us feel more lonely, more isolated, more depressed. And so the person who encouraged us to “get out there and meet people” has innocently contributed to draining our happiness even when they were trying to help patch and fill our bucket. This is one of the reasons many of us become afraid of going to therapy – if we get a well-meaning but clueless psychologist, they can innocently steer us in directions that turn out to be very bad for us.
But I noticed that the times I didn’t feel good and needed connection and specifically chose to go someplace with familiar people, people I knew understand and love me, people who feel happier when I am happier, people I am happy to see become happier, it really did lift my spirits and make me feel less alone. It really did patch my bucket and help me get it filled again from that mysterious inner spring from which so much happiness flows when it has not been blocked by loneliness.
So finding happiness and helping others find happiness is a balancing act. Sometimes we all need to be alone, but sometimes we are lonely and in those lonely times someone can blunder when they try to help us by encouraging or even coercing us to go to the wrong places. Happiness is a balancing act and autistic happiness even more so. And because our happiness is filled and drained in ways that can be subtly different (or, really, hugely obvious) it is so much more important that we learn how to protect our happiness and seek out our happiness allies to support one another and to cherish happiness together.
Our happiness thieves are not all so innocent and well-meaning, though. Some of the big bads we need to protect ourselves from, and often need support and assistance from others, are injustices and oppressions that disproportionately affect Autistic people and other vulnerable groups of people. Many Autistic people are in more than one vulnerable group, making so many of us even more vulnerable to the big bads.
Three of the biggest of the big bads are abuse, poverty, and lack of healthcare access.
Abuse is obvious – of course it drains happiness. What I was shocked to learn was how much more vulnerable we Autistic people are to abuse than the general population. Disabled people, in general, are at three times the risk of physical and sexual abuse compared to the general population and Autistic people are among the most vulnerable of all disabled people. Just one example: a study found that 83% of women with developmental disabilities have been sexually assaulted at least once in our lives. The same study discovered that 49% of people with intellectual disability experience sexual abuse or assault at least ten times over the course of their life. If these figures shock you, they should. I have faced repeated abuse in my own life and still it shocked me to learn how widespread the experience of abuse is among people with autism and other disabilities.
There are other kinds of abuse, too. Twenty percent of disabled people using a third-party payer system are passed from person to person, used as units of commerce by people who collect their disability money and give very little care in return, if any. That’s one-fifth of those on third-party who are only cared for the very minimum amount required to keep them alive so the money keeps coming in. And, at the risk of overwhelming you with the big bads, I also want to remind you that so much of what gets reported as “abuse and neglect” is actually rape, assault, and even murder, the crimes verbally downplayed by a system that views disabled people differently and, as a result, often fails to protect us.
Poverty is another big bad that drains happiness away. A British study found only 15% of Autistics had full-time employment. Many of us struggle on disability benefits that leave most of us surviving at 20% below the official poverty threshold. And I have known several Autistic people who have no income, no disability, no family to support them. Their lives can only be described with phrases like “crushing poverty” since merely saying “poverty” does not begin to convey their experiences. For many years, I knew them because I lived among them, crushed under the weight of lack myself. Twice the number of Autistics, per capita live in poverty than the poverty percentages of the general population.
Transitioning from one’s family of origin to independent living is so difficult. Finding and keeping employment is a huge challenge. Struggling to keep a roof over one’s head with no or very little income feels like a losing battle every day. These hefty challenges leave little room for personal growth, rest, creativity, socializing, and, of course, happiness.
The big bad of healthcare access drains happiness away through frustration, overload, and poor health. Too many Autistics had spotty healthcare, at best, before the Affordable Care Act and the ACA hasn’t significantly helped increase access. Look at Mel Baggs and Paul Corby to see especially grievous cases of Autistic people being denied lifesaving medical care. Baggs had to fight for a feeding tube for zir gastroparesis due to being a non-speaking Autistic adult. Corby is still trying to get on a heart transplant waiting list despite being young and in excellent health other than his heart disease but he is being denied access to a transplant solely based on his autism. Our healthcare system is failing our most vulnerable citizens.
These are the battles we have to fight in our pursuit of happiness. These are the big bads we must all be joined against if we are going to be one another’s happiness allies.
In this battle, the strategy that works for each of will necessarily be different. We are divergent in many ways and there are many different flavors of autism and many different support needs and combinations of support needs. There are many different skill sets among us and many different challenges. But all of this can be said of the entire collection of human beings. We are as much similar as we are different – similar to other Autistics, similar to other human beings. To find happiness, we must be understood in both our similarities and our differences, not just one or the other.
I have found happiness. Most of my life it seemed impossibly elusive and I still struggle to protect my precious joy, but I am here to tell you that the Autistic pursuit of happiness is not a futile quest. I have had to color outside the lines and think outside the box in order to find happiness. As a matter of fact, I don’t just think outside the box – I live outside the box. I did my research and weighed my options and as a result I moved into my van because it is much more affordable than an apartment and gives me the freedom to move around, meeting other Autistics and working to increase understanding and acceptance of our different perceptions, our different lives, our different needs …. and our commonalities as well.
I know the life I have chosen is not for everybody, Autistic or not. For starters, I love driving and am pretty good at it, if I can say so myself. Most of my friends are not able to drive. Nearly all of my Autistic friends are unable to drive for a variety of reasons. I live in a very small space, which is also something that doesn’t appeal to everyone (although I like to joke that my home may be small but my yard is three million square miles. How can I feel cramped with that much space to explore?) I have a lot of variety in my life, but I have found ways to build in the comforting routines that keep me grounded and happy.
The main point of mentioning my alternate life style is that it is a way of living I chose for myself. I found the strength and courage to make a change. I found the power and autonomy to choose for myself. I surrounded myself with supportive people who were also excited about my choice and could help me sort through questions and problems that arose. This is what fosters happiness. Happiness is not a specific lifestyle, it is the ability to make decisions for yourself and be treated with respect and dignity, as a person who is capable of knowing what they want from life. Happiness is the freedom to choose and the support to make those choices into reality. This is what I want for all Autistic people: To have our competence respected, to have our support needs met with dignity, to be encouraged to build a life that serves our needs and wants. It seems to me that these are small things to ask for but so often it feels as if we are asking for mountains to be moved. Why are such basic things treated so often as unreasonable?
But they are building blocks that are fundamental to the pursuit of happiness. Yes, a person can find happiness in the most extreme circumstances. Viktor Frankl taught us this in his classic book, Man’s Search for Meaning. But if we are committed to fostering the Autistic pursuit of happiness, we cannot dismiss the importance of smoothing the way for happiness to flow freely. Just because humans are capable of finding happiness in the deepest pit doesn’t mean it is right for us to leave even one person lacking in the freedoms and supports that so many other people inherit as their birthright.
Many of the things you will hear from presenters today will elaborate on themes I have barely touched on this morning. Listen with an open heart and open mind. These discussions of pursuing happiness are long overdue in the autism world. They are inextricably intertwined with issues of health and safety, survival and growth.
The Reverend Doctor Martin Luther King, Jr. quoted the prophet Amos, speaking of “justice rolling down like waters and righteousness like a mighty stream.” When that righteous flood of justice roars through our valley, sweeping away the stones of restriction, oppression, stereotypes, and obstacles that crush us and dam our fountains of natural joy, we will be free to unfurl our tender roots. Nourished by our own flowing happiness, we will stretch our arms high, like branches growing upward, grasping the very rim of the sun. Our laughter will tumble down like birdsong as we pull ourselves and one another higher and higher still, rising on our tide of happiness, reaching ever toward an unlimited sky of dreams beyond today’s imagining. The pursuit of Autistic happiness begins right here, today, as we uncap the well and drink joyously together. Thank you for joining us today.