April is Autism Awareness Month. Celebrating Autism Awareness Month would seem to be a slam-dunk. That is, who could object to something like this? And yet, there seems to be a difference of opinion. Should we celebrate autism awareness, given the lack of awareness in this country? Is Autism Awareness Month an excuse for fundraising? And why are we focusing on awareness, when in fact awareness is only one piece of the puzzle so-to-speak?
A while back, I read a blog by a parent of three young women with autism, whose ages range from 14 to 20. The title of this parent’s blog was “My three daughters are autistic. I despise Autism Awareness Month.” For this mother, the word “celebration” rubs her the wrong way. In her blog, she discusses how her life is consumed by the needs, worries, stress, and challenges of raising her daughters. She questions why we celebrate a global crisis. Autism Speaks, the world’s leading autism advocacy organization, bills Autism Awareness Month as an event “that celebrates the unique talents and skills of persons with autism.” This mother takes issue with those who see these unique talents as a gift and leave it at that. Last year, Jerry Seinfeld commented that he thought he was on the autism spectrum, and characterized it as an “alternative mindset,” not a disorder.
As the father of a child with autism, I can feel this mother’s anguish and pain. I too have issues with some of the ways in which we celebrate Autism Awareness Month. Too often, we sugarcoat autism. As caregivers and parents, we tend to keep our frustrations and anguish to ourselves. Autism Speaks’ “Light It Up Blue Campaign” becomes a substitute for taking a hard, real look at this developmental disorder. Congressional declarations, online activities, and National Autism Awareness Month Posters give us a false sense of accomplishment. Large amounts of money raised by T.J. Maxx, Toys “R” Us, Walgreens, and other corporations for research diverts attention away from the fact that people with autism are in dire need of social programs, educational and employment opportunities, and quality health care.
Instead of celebrating, let us acknowledge how far we have come and how much work needs to be done. Autism is not the “death sentence” some people perceive it to be. Like anyone else, a person with autism can be a productive, caring, contributing member of society. When my son Jimmy was born nearly four decades ago, the public’s awareness of autism was virtually nonexistent. Autism’s public profile in contemporary society is something to build on. But instead of simply becoming aware of this thing called autism, let us work at understanding the wide range of differences among people along the autism spectrum. Let us move beyond putting autism puzzle magnets on our cars, wearing blue bracelets, and holding rallies and other “events” in our communities to celebrate autism awareness. Let us do the small but significant things that make a difference in everyday life. For instance, invite a child with autism to a birthday party. Take a moment to provide some type of relief to parents and caregivers of children with autism. And finally and perhaps most importantly, do what is necessary to help someone understand that people with autism have feelings, talents, and a need to feel loved just like anyone else.
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