One of the hardest decisions I had to make as a parent of a child with Aspergers was what to tell people when they met him. Should I let them form their own opinions of James perhaps wondering about his lack of eye contact, but charmed by his incredible vocabulary, and a little confused by his volatile anger all on their own? Or should I interject my pat phrase, “James has Aspergers, which is high-functioning autism. He’s very intelligent, but he has emotional problems.”
It seemed prudent to tell his teachers and tutors what to expect from him. I wanted them to be sensitive to his moods, to be empathetic with his frustrations. I wanted them to understand that he was on an IEP, that he needed help with writing, hated loud noises, and often wanted to play alone.
But should I tell his friends? Or rather, should I tell his friends’ mothers? For little boys ages five or six did not really care if James wanted to keep his coat on inside because it makes him feel safe. But the friend’s mother who struggled to get him to take off a wet raincoat before walking on her newly-refinished floors, probably should have been warned.
Because James was a “borderline case,” and I didn’t want him to be labeled, I did not tell his soccer coach. I thought I was doing the right thing. I hoped that James would be just another kid on the team, that he would learn cooperation and group skills along with passing the ball and guarding the net.
But in the first game, James became frustrated that he couldn’t run as fast as the other children. He wasn’t able to keep up with the fast pace of the game and wanted to quit. I remember my husband yelling at him from the sidelines, the edge in his voice as he screamed, “Get tough!”
But my son never got tough. Fifteen years later, he still hates soccer, he’s still afraid of loud sounds, he still wears his jacket 24/7.
In fact, he wore it into the doctor’s office last week, only taking it off when the nurse had to take his blood pressure. He winced as the cuff tightened, and he rubbed his arm angrily when she took it off. I’m sure she wondered why he talked so loud as he described his symptoms, and I know she grew frustrated as he droned on and on.
When the doctor came in, and James flinched and fussed as she palpated his glands, I finally intervened.
“He has Asperger’s,” I said. “He’s extra-sensitive to touch.”
I watched as the news registered on her face, as she stepped back and then tried again with a gentler touch and a more-patient manner. I know that James should have told her himself. We’ve talked about the term, “self-advocate.” He knows what it means, and he believes that it’s necessary.
But I know that tomorrow, when he interviews for that part time job stocking shelves, he won’t disclose that he has Aspergers. He says that he doesn’t want any special treatment.
And as much as I admire him for that determination, I know I will wonder if it’s my fault when he says that he wants to quit in a month or two. I will certainly feel guilty when I wish he were “tougher,” and I will hug my husband tighter that night as we wonder what’s next for our son.