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.