OPINION:
It was July 2006 when a child psychologist visited our home for a fifth and final evaluation. After two months of tests administered by a variety of experts, she was going to tell us why our two-year-old son was not talking yet, and our plan of action to remediate that.
Only minutes after trying to interact with him, and getting scratched and pinched in return, she unemotionally said to her assistant, as if I weren’t there: This is neurological, he’s got autism. At that moment I loved my son with the deepest, most overwhelming affection I had ever felt. I did not hear much of the rest; I just wanted them to leave so that I could cry, hold my son in my arms, and search the word autism on the Internet.
Not even two years later, in part because of the mildness of his case, our little boy has responded exceedingly well to the intensive therapy he’s received. Some questioned my decision to publicly disclose a diagnosis that could eventually be reversed and that ultimately belongs to him. To me, this is no longer about my son. As the poet Andres Blanco wrote, He who has a child, has all the children in the world. Sixty-seven children will be diagnosed with autism today in the United States, and in the faces of those children, I see my son.
I see him in the faces of the thousands of children that could have been diagnosed today, but were ignored for lack of awareness and resources; I see him in the face of those who are diagnosed, but whose parents are too proud to accept it, and fail their own children by depriving them of the services they need, and the social acceptance they deserve.
Autism Speaks, the leading advocacy group on autism spectrum disorders, says that children can usually be reliably diagnosed by age 3, though new research is pushing back the age of diagnosis to as early as 6 months. Parents are usually the first to notice unusual behavior in their child or their child’s failure to reach appropriate developmental milestones. Some parents of autistic children describe a child that seemed different from birth, while others describe one who was developing normally and suddenly lost skills.
People with Asperger’s syndrome share many of the sensory issues, comprehension difficulties, and social interaction barriers in a similar way to those with autism. Their intellectual giftedness helps families and clinicians, as they provide invaluable insight into their condition. Nowadays, many of these self-proclaimed Aspies are even redefining their syndrome to the point of calling it a way of living.
Some parents of young children on the spectrum hide their diagnosis and instead say that their children have a speech delay. They reckon that since their child’s condition may improve, it’s better to steer them clear of the shame and social rejection that autism might bring. If that were the case, it is about time we educate the community on what the condition is really about. Let us call a spade a spade, but let us not allow ourselves, or others, define our kids by what makes them different. Let us instead celebrate our children’s existence, focus on their strengths, and teach them how to overcome their difficulties.
A mother told me about her son who, despite her early concerns, was diagnosed at age seven. He was immediately moved from mainstream, to a special school. That was the day, she said, that the phone stopped ringing. And it wasn’t the kids… it was the parents. Her little boy never saw his old friends again; he had a label now. What should matter to the community is who our children are, not what they are called. My son is highly personable, expresses his emotions appropriately, speaks in long sentences, likes playing with friends, loves traveling, and is learning to swim and roller-skate. And by the way, he has autism.
By designating April 2 as World Autism Awareness Day, the United Nations has responded to our call to bring autism to the forefront. It is now up to all of us to fully embrace their diagnoses with dignity, for if we hide them, we perpetuate the stigma.
My wish is that one day, when my son goes to school, makes new friends, or meets the girl that is out there for him, it will be okay for him to say, “and by the way, I have autism.
• Jacqueline Aidenbaum, a national of Argentina, is on leave as an information assistant with the United Nations.
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