By Dwayne Ballen
Author of Journey with Julian
One recent morning I watched my son, Julian, walk down our driveway and get into the van that takes him to school every day. As the van disappeared from view, my thoughts ran to how far he has traveled in his brief 19 years. From a diagnosis of autism at age four to high school graduate, it's been a journey of twists, turns, reversals, forward leaps, and ultimately triumph. All of it, I strongly believe, has been made better because my wife Martina and I made the decision when Julian was a toddler to address obvious signs of his slower than typical development.
Unfortunately, our situation is not the norm in the black community. The reality is that African-Americans lag behind greater society when it comes to dealing with autism. The facts make this very clear. According to a study by Florida State University professor Martell Teasley, black children with autism are diagnosed on average at age five, compared to age three for their white counterparts. Those two years are crucial to the well being and quality of life for the children. One of the first essential truths any expert will tell you is that early intervention is vital. A child with autism is going to start his or her formative years with certain developmental deficiencies; therefore, the sooner parents and caregivers find out what the areas of need are, the sooner a plan can be put in place that helps the child make the most of their strengths.
As I travel the country delivering talks, giving media interviews and visiting with people about autism, I've come to the realization that there is an overall lack of awareness in the black community. Certainly much of this can be attributed to inadequate access to educational information and affordable healthcare. May I suggest that there is also a cultural component that figures in the equation? We blacks are traditionally conditioned to overlook the obvious early signs that something is not quite as it should be in children with developmental issues.
I recall the reaction of my late mother-in-law, a woman for whom I still hold the highest regard, when Martina first informed her that Julian had autism. Her response was one of slight puzzlement, followed by outright dismissal. Her reply to this news was, "There's nothing wrong with that boy, he'll be alright." Exceptional in so many other ways, she was unable to ever come to terms with fully acknowledging Julian's autism. This idea that he or she is just grandma's slow baby and it will work it itself out is, simply, wrong.
A couple of months ago I gave a keynote address at the Center for Disease Control's annual Autism Awareness Day. Afterward, I participated in a more intimate discussion with a much smaller group. There was one black couple in the room-out of respect for their privacy I'll refer to them as Mr. and Mrs. Smith. Over the course of the free-flowing discussion I noticed that each, when asking questions or talking about their young nephew, used phrases such as "He's probably borderline" and "It may be something else." Finally I pointed out to them that neither one would even say the word autism in reference to their nephew. This avoidance of labeling because of what it may do to the child serves no purpose in helping to address the child's real needs. What I'm hopeful that the Smiths (again not their real name) took away from the discussion is that most important thing is getting an assessment done for the child. Find out what you're dealing with-and if it's autism, which it certainly sounded like to me-then at least you know and can take proper action.
I have vivid recollections, from my childhood in a small town in South Carolina, of overhearing adult conversations about one neighborhood child who had considerable developmental challenges. In hindsight it probably was autism. There was such a sense of shame attached to the family that it was rarely addressed in public and the child lived a sequestered existence at home. In our (black) community it was so important that only the perceived best and brightest be presented as representatives of the race that children like this were mostly viewed as liabilities and embarrassments. Surely we have moved beyond that in 2013.
You never know what gifts that child, with autism, may have to share with the world. Julian is an exceptional artist, he specializes in animals and Disney animated characters. Last summer he volunteered at the local arts council. His charge was to work with small children. I arrived early one day to pick him up and witnessed a beautiful scene. There he was seated at a desk, with all the children gathered around him in rapt attention. He was, by request, drawing Disney characters for them and offering interesting bits of information about each one. I could see on his face a combined sense of worth and joy.
Don't we owe the opportunity to experience that to all our kids? If you or anyone you are close to has a child who is displaying developmental characteristics that don't appear typical, please take action. That child deserves every chance to have a successful life.
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