Autism and Etiquette. Should you tell a stranger when you think their child is autistic?Amy Lutz
At first, I thought he was just excited to be there.
He ran right into the middle of the circle, beaming, as if to announce: now the music class may begin. And we, the adults waiting with our babies and our toddlers for the teachers to start the “Hello” song, couldn’t help but smile back.
It wasn’t my usual music class. Because we had missed a session, my sister Keri and I had decided to take my year-old twins and her sixteen-month-old son to a make-up class on a different day. We didn’t know any of the families. But of course we cooed at the babies, and clapped for them when they proudly put their sticks away without help, as they were all starting to do.
Except for Ben, the boy from the beginning of class. He wasn’t following along with the teachers like the other children. Instead, he spun wildly to the music, or ran in happy circles around the room. Sometimes he would drop into his mother’s lap for a hug, but he wouldn’t come when she called him. I recognized this pattern of behaviors immediately: Ben was autistic. And what was also apparent was that his mother didn’t know yet.
My eight-year-old son, Jonah, the oldest of my five children, is also autistic. Watching Ben was like watching Jonah at music class when he was two, when I still thought he spent most of the class playing with the window blinds because he just wasn’t as interested in music as my friend’s daughter. I knew nothing about autism then. But after six years with Jonah, even my sister recognized the signs; when Ben started vocalizing in a consonant-free, almost shrieky way, she leaned over and whispered, “Spectrum?,” a shorthand way of asking if I thought he was on the autistic spectrum.
“Definitely,” I whispered back. Then, “Do you think I should say something?”
“No,” Keri said emphatically. Maybe, she added, the mother already knew.
But I was positive the mother didn’t know. I had overheard one of the music teachers observing that Ben reminded him of his grown son, who had ADHD as a boy. “Don’t say that,” Ben’s mother said, laughing nervously. That’s why I was so sure. To mothers of autistic children, an ADHD diagnosis would be nothing, a minor bump in the developmental road they would swap for in a heartbeat.
Keri was so alarmed by the possibility I might approach Ben’s mother that I didn’t say anything. Ben was twenty months old. He would be back to the doctor for his two-year checkup in four months. Surely his pediatrician would notice such a classic constellation of symptoms and refer his mother to a specialist for an evaluation.
Not necessarily, Susan Chaplick, Jonah’s speech therapist, said when I asked her what I should have done. Despite the astronomical increase in the number of autistic children – American figures generally hover around 1 in 150 – there are still doctors, Susan said, that tell concerned parents that boys often don’t talk until past their second birthdays; who don’t ask whether those children can point or imitate or make good eye contact. I was shocked. If there’s one thing that all the different factions within the autism community can agree upon, it’s the importance of early intervention. Some studies have claimed that up to fifty percent of autistic children achieve a full amelioration of symptoms through early intervention. Given this, it seems terribly negligent for pediatricians to overlook indicators of delayed development.
And maybe it’s not just the pediatricians who are being negligent. My husband thought my silence in the music class represented a “moral failure.” He didn’t care how awkward it would have been to approach a total stranger, or how unlikely it was that she would take my word over that of her doctor, who obviously had never suggested a problem of this magnitude. “You have a responsibility to the child,” he said, simply.
But is it that simple? What, exactly, do we owe other people? Clearly, if I saw a burglar breaking into a home, I What, exactly, do we owe other people? would call the police. I would pull a swimmer who was struggling out of the water and cry out to a person about to step into traffic. And not only would these people be grateful for my assistance, but I have no doubt I would suffer the full judgment of society if I allowed these events to proceed without interfering.
And yet:”Never again,” my friend Stacey Tanenbaum – whose son Jordan was in an autistic support class with Jonah five years ago – announced, when I asked her if she had ever suggested to a parent that her child might be autistic. “Nothing good has ever come from it.” She said that her observations have been met only with anger. One acquaintance never spoke to Stacey again – even after official confirmation that her daughter was on the severe end of the autistic spectrum. Another friend of mine with an autistic son, Stacey Fliegelman, admits that she has been reluctant to confront parents because she knows “they don’t want to hear it.”
For some reason I don’t entirely understand, when it comes to autism, the analogies fail and the gratitude disappears. “It’s not the same,” Keri said, when I pointed out I would want someone to tell me if that bruise on my child’s leg was actually a tumor, or if those few seconds of blinking were really an epileptic seizure. But why isn’t it the same? “You could be wrong,” Keri said. And I agree – it would be unbearably cruel to unnecessarily send any parent into the emotional tailspin that follows such a diagnosis. But in Ben’s case, I wasn’t wrong. When a child exhibits delays in language and socialization, along with quirky behaviors like covering his ears and repetitively touching his hands together, there’s no doubt an evaluation is in order.
One explanation may be that parents who have been insulated from the autism epidemic tend to hold many false assumptions about the disorder. They’re utterly unable to reconcile their happy, affectionate child with the rocking, head-banging, withdrawn autistic of their imaginations. A second factor may be offense at the perceived implication that the mother is a bad parent for not noticing problems obvious to a complete stranger. Whatever the reason, it’s really too bad. Because who better to help identify the tens of thousands of undiagnosed autistic toddlers and preschoolers out there than the parents who know autism better than any general practitioner – parents who have read the books, examined the research and seen firsthand the different manifestations autistic spectrum disorders can take?
So what happened with Ben? When I couldn’t stop thinking about him two I do believe we are all, in some ways, responsible for one another. weeks later, I went back to his music class. Only his mother wasn’t there. Instead, Ben was under the care of a nanny. As the teacher was wrapping up, I mentioned that Ben reminded me of my oldest son at that age. I didn’t mention autism at all, just that Jonah was a late talker – an approach my sister recommended as being least likely to be met with hostile rejection. I asked the nanny to tell Ben’s mother that, because of his language delay, he qualified right now for free speech therapy from the county, and the nanny said she would.
In all likelihood, this will have no effect on Ben’s immediate future. I know if someone told me, when Jonah was twenty months old, that I should call the Early Intervention Unit, I would have thought, he’s not even two yet. But maybe, if Ben’s mother already has her suspicions, this might prompt her to pick up the phone. In any case, I carried my babies out to the car relieved that I hadn’t let that family pass out of my life without at least planting a seed of concern. Because I do believe we are all, in some ways, responsible for one another, and that we need to share our experience when necessary – even if, especially if, it’s experience we never wanted.