The Autism Question

12 years later

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It finally happened. 

The question that I’ve been waiting for the past twelve years.

Julian, my 14 year-old-son, asked me if he had autism.

Now there are different opinions on when to tell your child that he/she/they have ASD (Autism Spectrum Disorder). There’s one school of thought, proffered by the likes of Andrew Solomon, author of Far from the Tree, that parents should be talking about autism frequently and openly around the child, so that the question of this diagnosis is never a surprise. 

On the other end of the spectrum, so to speak, is the view that you wait until the child asks about autism. This is the view of Margaret Poggi, head of the Learning Spring School in New York City, which Julian attended from kindergarten through 7th grade.

I asked both Solomon (via webinar) and Poggi (in person) many years ago for their thoughts on this, and ultimately opted to follow the advice of Poggi. Her view resonated more with my own, and though Solomon, a celebrated writer and lecturer, has done on-the-ground research, he doesn’t have the day-to-day interactions with ASD kids and their families that Poggi possesses. 

I had asked Poggi a decade ago—at an open house before Julian started school—when she’d suggest telling him about his diagnosis. Would starting kindergarten be a good time, I asked, given that he would now be attending a school exclusively for kids with ASD? He was coming from a therapeutic nursery school setting, but one that included kids with a range of diagnoses, not just autism. 

She cautioned me not to do that. “Is he really going to understand what autism is,” she asked me, urging me to wait until he came to me and my husband with questions.

Well, for all the years he attended a school for autism, he never once asked. While social and emotional growth strategies occupy a significant part of the curriculum at the Learning Spring School, talking to the kids about autism was never part of the agenda—at least for Julian; it may have come up for other kids in their 1:1 therapy sessions. Likewise, at home, we concertedly avoided using the “A” word in conversations in front of Julian, so much so my younger daughter once asked me in private, “Does Julian even know that he has autism?”

If he did, he kept it to himself. 

Until last Thursday night when Julian asked me, quite suddenly and simply, “Do I have autism?” I was in the middle of Zooming my synagogue’s Yom Kippur service, so it took me a couple seconds to answer honestly, “Yes, you do.”

I walked away from the screen to continue the conversation with him, which went something like:

Julian: “Why do I have autism?”

Me: “It’s how you were born.”

Julian: “Why do I have to be different?”

Me: “Your brain works differently. There are certain things that come easily to you, like navigation, and other things that are really tough.”

That seemed to satisfy him, but I delicately raised the topic later, when I was breaking my fast, at which point I asked how he learned about his diagnosis.

“My IEP,” he answered succinctly.

That’s his “Individualized Education Program,” a multi-page document detailing his classroom setting and “classification,” as well as a myriad of goals for the year that are unique to the student’s own trajectory. There are goals for each core academic subject as well as social, emotional, and behavior goals such as “the student will display appropriate coping skills to deal with changes or disappointments.” The IEP is a living document that can be amended, if necessary, throughout the year and one in which my husband and I, as well as Julian, have full access. Every year, we have been asked to contribute to the process of drafting the IEP and are invited to attend the annual “IEP meeting.” 

Last year, for the first time, Julian attended part of the meeting. He had made it clear that he wanted to be there, and his fervent wish to attend the local high school was granted at that meeting.

This was not at all how I had envisioned his high school years. After all, we had toured other schools in the greater region that were more explicitly therapeutic in nature, but Julian made it clear that he was not interested in sitting on a bus and traveling “out of town,” when our town’s high school, which sits picturesquely atop a hill surrounded by mountains, is five minutes from our home.

Fortunately for him, it offers a program that serves students with similar “classifications,” and during our spring visit to the school, Julian fell for the spirited vibe permeating the halls and classrooms. It’s an academically rigorous program with both academic and social support, and while it’s too early to know how it’s all going to go—school just started last Monday!—we are impressed with the teacher-parent communication and the sheer desire by the staff to set the kids up for success. 

Now that Julian knows that he has autism, I’ve started calling it out more: during a meltdown after we took away the family iPad; when he engaged in him some forward-backward repetitive motion upon leaving his bedroom, as well as to help explain why befriending other kids his age is so tough.

After all, it’s only when we’re truly aware of our respective challenges that we’re able to begin to work on changing them. When used in this spirit, knowing one’s diagnosis is helpful. At the same time, in functional nutrition, we never treat “the diagnosis”; we help the individual person in front of us. This makes perfect sense because how one person manifests “autism” is often starkly different from the next person.

I think the main reason I’ve refrained from telling Julian about his diagnosis all these years is because he’s so much more than his diagnosis—we all are. “Autism" might define parts of him, but not all of him. That’s something I want him to know, and I’ll be sure to tell him that as we continue to talk--because there’s never just one talk--about what an autism diagnosis means for now and for the future.