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.