Introduction by Steve Silberman: Six years ago, the United Nations declared April 2 to be World Autism Awareness Day. For most of the 20th Century, autism was rarely talked about in public, because the psychiatric establishment — led by a psychologist and popular author named Bruno Bettelheim, considered the preeminent authority on the subject in the 1960s — blamed the condition on the emotional trauma of being raised by a cold, unloving mother. The “refrigerator mother” theory was utterly discredited long ago as an elaborate fraud, and autism is now understood to be a life-long disability caused by complex interactions between genes and the environment. Autistic people and their families are still subject to stigma, however, in part because many of the organizations that view Autism Awareness Day as a fundraising opportunity use fear-mongering language like Autism Speaks’ oft-repeated refrain that “more children are diagnosed with autism each year than with juvenile diabetes, AIDS or cancer, combined.”
In an age when it’s common to make the casual, even flippant observation that the guy in engineering or the socially awkward character on TV is “on the spectrum,” it’s hard to imagine that just 40 years ago, few pediatricians, special-education teachers, and therapists had even heard of autism. There was no spectrum. “Infantile autism,” as the condition was known at the time, was considered a very rare malady of childhood, in part because it was so narrowly defined. Children with intellectual disability (then called “mental retardation”) were excluded from a diagnosis by Leo Kanner, the child psychiatrist that discovered autism in America in the 1940s. Autistic children who could use speech were often diagnosed with something else, like childhood schizophrenia. Adults were never considered for a diagnosis of infantile autism, and teenagers who would now be diagnosed as having Asperger syndrome or PDD-NOS were said to have “residual autism” by the handful of specialists in the country who could recognize it.
That landscape changed radically in the 1980s and 1990s, when the diagnostic criteria were dramatically broadened to include the full breadth of what we now call the spectrum. The debunking of Bettelheim and his ilk freed families to talk about autism candidly and openly, and a brave generation of parents took up the cause of advocating for their children’s needs. In those days, promoting autism awareness was an effective remedy for years of silence and shame.
But that’s not where we are now. Our society is not only “aware” of autism, it’s obsessed with the subject. Unfortunately, though, this obsession is often misdirected. Instead of worrying about what families of autistic people are supposed to do when the services and support devoted to children run out after high school, or how autistic adults themselves are supposed to lead happy and productive lives without access to employment and health care, we perseverate about the latest theories of autism causation. Did you see the news that older grandfathers may contribute to autism risk? Have you heard the rumor that living near a freeway is somehow related to autism? Did you see the thing about mothers who take antidepressants or fail to take folic acid supplements? Have you read the story in the New York Times about that new inflammation theory? It’s enough to make young couples think twice about having a kid at all.
If you even skim autism headlines, you’re familiar with all of these things. But here’s something you may not have heard: only a tiny fraction of the money donated to fundraising organizations like Autism Speaks in April goes to making the lives of autistic people and their families happier, healthier, and more secure. Most of the money raised during high-profile promotional campaigns like Light It Up Blue goes to major universities and laboratories to fund research into the latest cause du jour.
I’m in favor of funding smart and ethical research. By studying autism, we’ve learned very valuable things about genetics, human development, and how the brain works. But if the hidden cost of this education is panic-inducing language that further stigmatizes autistic people and their families, it’s a bitter pill. That’s why I recently signed a pledge from the Autistic Self-Advocacy Network to only participate in public events that include autistic people offering an inside perspective of the reality of their own lives.
Three years ago, a professional book indexer and choirmaster at her church in Virginia named Paula Durbin-Westby, who is on the spectrum herself, decided to “take back” April 2 and devote it to autism acceptance, rather than mere awareness. By promoting the notion that autism is a life-long disability rather than a “disorder” or an “epidemic,” and stressing the fact that people at all points on the spectrum have valuable gifts to offer society as well as significant challenges in daily life, she hoped to refocus society’s efforts on initiatives that will help autistic people and their families succeed, such as the development of new, affordable technologies to enable communication for people who have difficulty using speech.
Last year for Autism Acceptance Day, I yielded this space to autistic self-advocates like Paula, blogger Lydia Brown, and aikido instructor Nick Walker, and parent-allies like Forbes science writer Emily Willingham, to make suggestions for social changes that could dramatically improve the lives of autistic people of all ages. This year, I am proud to feature a prominent parent blogger with a background in health law, Brenda Rothman, to talk about what she’s learned by raising her son, Jack.
When Jack was a baby, he was diagnosed with classic autism, and is still developmentally delayed in many ways. But at 8 1/2, he is a handsome, sweet, tirelessly curious boy who notices minute details in keys, cars, and architecture, and can recall them easily. He enthusiastically designs and directs family projects like building a replica of Lincoln’s funeral train car, and loves bowling, old fire engines with no cabs, Kubota tractors, horses, cats, dogs, steam trains, propeller planes, presidents, and traveling.
I admire Brenda’s frankness in sharing her difficult journey of coming to peace with her son’s neurological differences. She blogs at mamabegood.blogspot.com. Brenda has also published essays in The Thinking Person’s Guide to Autism, Huffington Post, BlogHer, and Mamapedia, and advocates for supports and rights for autistic people to legislators, service providers, and educators. Please follow her on Twitter as @mamabegood.
What I Learned from My Autistic Son
Autism is part of my son Jack’s biology, as much as the shape of his nose and the color of his skin. I want the world to welcome him for the beautiful person he is. As a parent, an activist, and an ally of the autistic community, I want public acceptance of autistic people, not just autism “awareness.” I don’t want my son or any autistic person to be feared or pitied for a fundamental part of their being. I don’t want Jack to feel ashamed of himself, or to have to hide who he is, to be included. That’s why I support the autistic community’s celebration of April as Autism Acceptance Month.
I didn’t come easily to this place of acceptance. My experiences of becoming a parent and my friendships with autistic people led me to it. So let me share with you my journey of raising my son Jack. I’ll start way back, in the early days of my marriage.
Like every couple, my husband and I transitioned from the honeymoon stage to the reality stage, complete with arguments about toothpaste tubes and dishwasher loading. Our ideas of what should be happening, and what was actually happening, were compounded by infertility. After trying to work through these difficulties on our own, my husband sought professional help. He sat on the couch with a psychiatrist who asked him, “How can I help you?” My husband replied, “It’s my wife. She’s having a really hard time. She’s very focused on having children. She doesn’t want to do anything fun. Even when we see a movie, she ends up crying.” My husband looked at the psychiatrist holding his pen and pad. The psychiatrist replied, “Well, now we know why your wife should be here. Why are you here?”
This flawed perception that this other person has a problem, and that we have to fix them, became the central focus in my experience of marriage, parenting, and disability. The moment we identify the problem as residing in the other person is when we need to examine ourselves. I had to go through that lesson many times before I got it. Back then, I thought all I needed were the rules on how to fix the problem. Tell me the rules, I’ll learn them, and then I can fix what’s wrong with that person.
With my rules in one hand, I sat down in my first college philosophy class. If you really want to mess with a rules-based person, put them in a philosophy class. The professor began discussing different ways of perceiving the world. Should we follow Plato’s theory of perfect forms or Aristotle’s concept of a happy average between bad choices? Should we subscribe to Descartes’ theory of knowing only through our minds, not our bodies, or to Hume’s theory that we can never know anything for certain? I sat at my desk, completely confused, thinking desperately, “Those aren’t rules! Where are the rules? I just need the rules!”
Philosophy gave me an initial glimpse of the truth that life isn’t about learning the rules to fix other people’s problems, but I soon got over it. I went to law school, which made sense for someone who wanted rules and control. The law is a finite set of rules and lawyers just tell you what those rules are, right? Wrong. Law school teaches you to question the rules. It demands that you think critically about rules, about behavior, about authority. It requires you to question yourself, your own thinking, and your own beliefs.
After this kind of education in critical thinking, you’d think I would have finally got it. I didn’t. But life was about to give me a big lesson.
After years of trying to conceive, my husband and I got lucky and I gave birth to a baby boy. What we didn’t know was that our baby had been struggling in utero. By the time he was born, he had lost a lot of blood and was very sick. He couldn’t breathe on his own. For weeks, he was in a coma while the doctors applied medicines and machines. Our precious baby boy was in such bad shape that we weren’t allowed to hold him, touch him, cuddle him skin-to-skin, or any of the other lovely things that usually happen when a baby is born.
One day, after Jack had been in the NICU for four weeks, we went into the unit. All of the doctors were sitting near the windows, a few feet away from our beautiful boy. I thought, “This is strange. Usually it’s just us and the nurses.” The doctors told us to sit down while the head neonatologist spoke. “What we’ve seen in cases with these kinds of breathing issues is that babies either get better in four weeks, or they don’t get better,” she said. “It’s been four weeks. So it doesn’t look good. He’s not going to make it.”
With tears streaming down our faces, we stumbled over to Jack’s bassinet. The nurse handed us a card with his little footprint on it. An inscription in the card read, “Happy Father’s Day — love, Jack.”
But that night, a miracle occurred. It’s not just me, a mother, calling it a miracle. The doctors called it a miracle too. Babies like Jack usually don’t make it. But my child did. His breathing improved dramatically. He was going to survive. We were profoundly shaken, thankful, and happy.
By the time we left the hospital two weeks later, however, the doctors had delivered more difficult news: Jack would have moderate to severe disabilities. I called my mom, crying on the phone. I wasn’t crying for what I expected of my child, or for a dream not being realized, or any of those things. “I just don’t want Jack to feel different,” I sobbed.
When our son was eight months old, we started him on physical and occupational therapy. We were taught how to manipulate Jack’s body so he would learn motor skills. To teach him how to crawl, for example, I’d move Jack’s left hand, and then his opposing knee, then his right hand, then his opposing knee again. I was completely comfortable because, here I was again, learning the rules about fixing another person’s problem. This was how it’s done, right? You learn the rules. You work on your child’s problems. Or so I thought.
As Jack passed his second birthday, I began keeping track of the ways that his development differed from what I expected. He loved playing with doors, opening and closing them, but didn’t like playing with toys. His use of language lagged behind that of his peers. He reacted in ways I didn’t expect to noises, crowds, crying babies, and children. He seemed happy, but he was also extremely anxious. When I questioned the service providers who worked with Jack, they stated categorically that it wasn’t autism, because he was too social (a myth). Another professional said it wasn’t autism because Jack responded to his name (another myth). A third thought we would have to wait to find out anything (also not true).
When Jack was three, he spent a brief, tearful stint in preschool. His anxiety increased exponentially in that noisy, motion-filled environment. The teachers told us they had never seen a child so anxious. We talked about the developmental differences we’d noticed with the neurologist who had worked with Jack since he was born. When he delivered a diagnosis of autism, we weren’t very shocked. We had already guessed. As the diagnosis sunk in, I thought – how can I fix this? What are the rules? I knew how to manipulate Jack’s body to teach him how to move. How could I reach into my baby’s head and fix his brain?
The neurologist referred us to a developmental psychologist who put me through six weeks of training in a form of therapy called DIR/Floortime. The aim of this therapy was not to enable me to “fix” my child, but to learn more about him: How Jack processes sensory input and responds to the world, how he uses language, what makes him laugh, what frightens him. This philosophy laid the foundation for how I think about autism.
At first, I’d go to the training session and tell the psychologist what I thought Jack’s problems were. “What about him playing with doors? That’s a problem, right? Kids don’t play with doors.” She would turn to me, tilt her head, and say, “You know this is about you, right?” That kept happening. I’d bring up what I thought was a problem, and she’d tilt her head and say, “You know this is about you?”
I thought autism was Jack’s problem and I was going to learn the rules of fixing him. Instead, what I learned was that the problem was with me. I would need to question every assumption that society had taught me about my son. Me — the lawyer, the critical thinker — I needed to challenge everything I had ever learned about autism.
We need to challenge how autism is defined — as a set of behaviors and deficits – because this description leads us inexorably to “fixing” autistic people. Autism is a way that the brain takes in, processes, and responds to information. This way of processing results in variations in the way the world is experienced and the ways that learning, communication, and movement occur. Autistic people develop skills on a different timetable or in a different order than expected.
But autism also comes with a set of strengths – a deep passion for interests, the ability to recognize visual, musical, social, or emotional patterns, and a strong individuality. When we ignore autistic strengths, we ourselves become stuck on fixing autistic people, rather than building on their natural talents.
We need to challenge how autism is portrayed in the media. Using fear, sadness, and pity to generate donations devalues autistic lives and terrorizes parents. Imagine never seeing a positive image of yourself or your child in the media. Imagine always being seen as an object of pity. The negative portrayal of autistic people and their families sends the message that their lives are joyless, worthless, and powerless. Instead of this unrelenting image of fear, we need to hear more stories of real autistic people’s lives – their joys, successes, and what helps them thrive.
We need to question the perception that disabled lives are pitiable. Our history and culture defines “normal” and anyone different is seen as less than. We are programmed to see those who are not white, male, and heterosexual, with certain physical and neurological characteristics, as not normal. This view explains why white skin is seen as the default and black skin is seen as different. It explains why women in business are told to think like men, and why any display of emotion is labeled a sign of weakness. It sends a message that anything different from “normal” is not good enough.
This is why I cried when I first learned that my son would have disabilities and be perceived as “different.” In that moment, my child’s potential was erased by my unconscious biases. Unknowingly, I had bought into the idea that anything other than a certain set of physical and neurological characteristics is a life of less than, a pitiful existence. What did that say about how I thought of as myself as a woman? What did that say about my relationships with black people? Gay people? About people with other disabilities? What did that say about my relationship to my own child? We need to challenge the belief that difference is less than. Our ideas about what is “normal” need to change.
We need to examine our response to autism. When we start with the incorrect premise that autistic people don’t understand or misbehave, we end up with behavioral programs directed at training them to act in “normal” ways. By recognizing that they already communicate and understand, we can identify the obstacles that make it difficult for them. We can move from trying to fix the person to giving them the supports they need. These supports include sensory-friendly environments, devices to assist communication, acceptance of moving around and stimming, and methods of learning that come most naturally to them. Creating supports like this are like building ramps for autistic people, instead of forcing them to climb stairs that exhaust and exclude them.
The Grand Lesson
After my child was diagnosed with autism, the grand lesson finally got through to me. Life isn’t about finding sets of rules. It’s about seeing my own child, other people’s children, and other adults behaving in ways that I didn’t expect, and then challenging my own prejudices and reactions. It’s about learning to broaden our narrow perceptions of normal, thinking carefully about what we mean when we say “different,” and how we define happiness.