April 20, 2012
If you’ve met one person with autism, you’ve met one person with autism, the saying goes. It’s hardly a one-size-fits-all disorder. That makes it tough to understand the one in 88 people who have the diagnosis today, as compared to one in 150 in 2000. Hence efforts continue globally by individuals and organizations to inform, particularly during April, Autism Awareness Month.
No one knows for certain what causes autism, though we’re told it’s likely a combination of genetics and some type of environmental insult. There’s no blood test or imaging procedure. Practitioners use a behavioral checklist to confirm a condition that involves significant challenges with social interactions, communication and behavior. As a spectrum disorder, the same diagnosis can apply to children who cannot speak and peers who talk incessantly. It includes some adults who wear diapers and others who hold professional jobs; adolescents who live in supervised group homes; and teens who drive and date.
Unlike the 1990s, when my son was diagnosed, information abounds for those who seek understanding. Traditional media outlets report on research developments and herald personal successes of autistics. Autism has become part of our vernacular.
As autistic children become adults, their parents are writing books and blogging about what they’ve learned in the trenches. “The Thinking Person’s Guide to Autism” is a collection of resources and essays by parents, professionals and autistics. Topics include what to do after the diagnosis; acceptance and inclusion; causation theories and dubious therapies. One writer explains her preference for being called “autistic” instead of “a person with autism.” Recently babble.com released a list of the top 30 autism blogs by parents and autistics (www.babble.com/baby/baby-development/top-autism-blog-big-daddy-autism/).
Locally, the Autism Society of Minnesota provides resources to parents and professionals through regular workshops and a lending library (www.AuSM.org). Staffed by many with a personal connection, AuSM’s role is to help people get the information they need; access services; learn how to talk to their families and teachers; and set their kids up for success, says Luann Quayle, AuSM education specialist and mother of a son and daughter on the spectrum.
Next Wednesday through Saturday (April 25-28), AuSM will host its annual conference in St. Louis Park. Local and national speakers will address topics ranging from making the diagnosis to developing strategies for daily success to preparing adolescents for adult life and much more. “Autism spans a lifetime, so people need information for the entire journey, not just for early childhood,” explains Quayle.
One goal of the conference is to provide tools so participants leave with something tangible they can implement. Another is to offer perspective of veterans like Quayle through presentations such as “How and When to Talk About Autism.”
While significant efforts are under way to increase awareness, an interesting phenomenon is afoot. Last year, Paula C. Durbin-Westby of Virginia started a Facebook campaign to change Autism Awareness Month to Autism Acceptance Month. She explained her rationale in a blog post: “Acceptance of real human beings, with all our quirks, disabilities, gifts, personal preferences for how we live our lives — that is what has been missing from the big picture. The efforts of those of us who see autism as something other than a set of dire statistics to be aired out once a year are steadily gaining ground. My hope is that one day people will approach autism and autistic people with more understanding and more respect for our differences and disabilities.” (www.autismwomensnetwork.org/article/autism-awareness-month-nothing-about-us-without-us).
Others, including Shannon Des Roches Rosa, co-founder and editor of “The Thinking Person’s Guide to Autism,” have weighed in. “Autism Awareness doesn’t really help autistic people in general, and kids like my son Leo specifically. It makes it too easy for well-meaning people to feel they are ‘doing something’ about autism if they wear a blue ribbon or buy a blue light bulb — when neither of those actions translate to real-world benefits and support for autistics and autism families,” she wrote. “(M)y autistic son doesn’t need awareness. He needs people to understand him and his needs without stigma or pity…” (www.blogher.com/april-autism-acceptance-month).
It’s a compelling position that strikes close to home. My 20-year-old son recently offered astonishing insight into how he views his autism. Asked if he would opt for a cure for autism if one became available, he replied, “You can’t cure autism because it’s not a disease. It’s not a tumor. It’s the fact that your brain is different. Curing autism sounds like it’s a bad thing. It’s a way of life. I’m proud of it. It’s who I am.”
In the years since his diagnosis, I’ve made the journey from despair to acceptance by listening to people like my son and Durbin-Westby. The more insights I glean, the more I reconsider my own views and responses. What looks, through my lens, like quirky behavior – hand flapping or covering one’s ears – is actually an adaptive response for one whose brain functions differently than mine. Yet the tendency is to label or judge another’s behavior as outside the norm.
People with autism have much to contribute, notably their unfiltered insight. While it’s important and timely to have the discussion, I don’t think awareness and acceptance are mutually exclusive. Awareness is about opening one’s mind; acceptance is about opening one’s heart. Ultimately, awareness is the conduit to acceptance.