I'm a writer, but my autistic child can barely speak

At 20 months old, my son, Henry, could spell “elephant” with alphabet magnets. Now five, he can read Green Eggs and Ham or The Very Hungry Caterpillar. In fact, he can read almost anything you put in front of him. My sister-in-law once held up pages with Shakespearean quotes on them: “To be, or not to be: That is the question” and “Now is the winter of our discontent.” My son read them aloud—and yet he can’t talk. Not like other kids. I don’t get to hear about how his day was or what he wants to do next. He’s never told me what he was dreaming of when he woke from a nightmare. To even say “I’m hungry” or “I’m tired” can be a huge effort for him.

As a parent, you have some simple, universal expectations: Your kid will walk and talk at the same time as others, learn to socialize, imitate you. But what happens when he doesn’t?

I was a gregarious kid who excelled at everything, especially reading and writing. From an early age I wanted to become a writer, and I pursued it resolutely. I rounded up my classmates and put them to work making our own newspapers and magazines. By 28, my first story collection had been published; by 32, my first novel. Now I live in New York, and my fourth novel, Men Walking on Water, has just come out. So when I imagined my child, I assumed he’d be like me—a communicator, even if he was a bit dreamy—or like my husband, Brian, a one-time teenage delinquent-turned-artist. Would my son and I cuddle under blankets and read the whole Lord of the Rings trilogy together before he was eight, as my mother had done with me? Would we have long, sweet conversations? When you realize your child’s path will be vastly different from yours, it wallops you.

By 18 months, I noticed Henry wasn’t meeting some of his milestones. He didn’t wave or point. He didn’t always look at me when I spoke to him. He had trouble using his spoon. He had developed a large enough vocabulary and then seemed to lose it. People assured me it would be fine; he would catch up. At two, when I put him into daycare so I could write, I was certain mine was the “difficult kid,” and I quietly blamed it on his father’s genes. Henry was hyper, required more attention and wouldn’t nap or sit still. The novel grew, and so did my son, but every day was a challenge and the daycare struggled to accommodate him. We had a very serious meeting about napping. “He’s a wanderer,” they told me. “He keeps disturbing the other kids, preventing them all from taking their one o’clock nap.”

The only way he could stay was to attend in the mornings only. The daycare also suggested we have him evaluated. “What does that mean?” I asked. “Evaluated?”

Soon people who were abbreviations began filling up our life: PTs (physical therapists), OTs, (occupational therapists) and STs (speech therapists). They tested and ranked Henry. His scores weren’t high. If he didn’t want to perform a task, they marked him down as not being capable—even when I interjected that, in fact, my son could stack 10 blocks and was just ignoring them.

We received reports from these evaluators: Henry was a special needs kid. But what did that mean? The numbers said my then three-year-old had a serious disability—that his IQ was very low and he was behind physically and socially. My eyes welled up when I looked at those numbers. Given his early reading abilities, I knew Henry must have some spark: He understood how words worked, even if they eluded him when he most needed them. He could make what we called “small sentences” (“Where’s Dad?” or “Go home”), but if he was stressed, language left him. In those moments, at best, he relied on scripts—repeating meaningless phrases picked up from Super Why (“And the answer is: night light!”) or the Sesame Street final credits and list of sponsors. At worst, he resorted to tears, howls and throwing his body.

I still wanted him to have a “normal” childhood. I wanted him to attend a mainstream school that fall. When Brian and I moved to Brooklyn, we’d chosen a neighbourhood with good public schools and dreamt about our kid attending them one day. The school nearest us had an arts focus, French immersion and put on Shakespeare productions by fifth grade. It seemed so unfair.

While at a café one day, another writer and I made small talk about our children. To avoid comparing their accomplishments and activities, I just told her: “My son is different.”

“What do you mean? Is he an alien? Is he blue?” she joked.

I realized the truth in her words. Henry is, in some ways, blue. He’s unlike the others. I stared into my coffee in shame. I, too, was losing my language, my ability to talk about him.

At four, Henry began attending that mainstream school with an IEP—an individualized education plan—which meant he worked one-on-one with a special teacher as well as being in the regular class. But it wasn’t enough. “I hate school,” he told Brian, a very big statement for Henry. After school, he’d collapse on the sidewalk, wailing. He once went two weeks without eating even a cracker from his lunch box. Audrey, Beatrix and Harlow all tried to befriend him, but Henry pushed the girls and their hugs away.

I volunteered to teach a story session in Henry’s class. He was uninvolved, just as his teachers had told me, but seeing it first-hand was heart-rending. Because he avoided eye contact, I was convinced he paid no attention at all. He wandered, while the others sat rapt. He didn’t respond to his name when I tried to draw him back into the group. I left at the end of the story hour, went home and cried. I was stunned the next morning when he took my hand and asked me with just two words if I could come back and “teach story” again. He had been listening, in his own way.

Not long after, we raised money from family and friends so a neuropsychologist could formally diagnose Henry. She could do what the other evaluators couldn’t: name Henry’s condition. His diagnosis was autism spectrum disorder, Level 3, with language impairment. This meant that although he needed the highest level of support, he had no intellectual impairment that could yet be seen—a big difference from what the previous scores had said.

Once we had the official word, acceptance was as simple as water. He was my autistic son.

We enrolled him in a therapeutic school that pioneered the DIR (Developmental, Individual-differences, Relationship-based) model, also known as the Floortime method, and we trusted. This approach means bonding with and respecting the individual, getting down on the floor with the kid at his level, and letting the child lead. Henry’s first day was also his fifth birthday. I sent him off with a new plush dragon for bravery.

Six months in, Henry smiles as he waits for the bus in the morning. He smiles when he comes off the bus after a long day. He’s learning to talk more and tell us his needs, his wishes. He speaks of himself in the third person (“Henry wants to watch his videos on YouTube”). As a writer, I’m just fine with that. It took me until my twenties to realize point-of-view changes could help a story.

Will he ever interact with his peers the way I did? Will we pick apart a novel, sharing our favourite moments? Will we ever have a dialogue longer than a few minutes? It’s possible. I see changes in him daily. For instance, he has a sense of humour he can now express: “Mommy, this is a little book,” he tells me, picking up my 500-page novel. But his being like others doesn’t matter to me as much as it once did. Our language is ours—mine and his.

Recently, we were out for a walk, when suddenly he asked, “Mommy feels proud?”

I couldn’t think of a reason for him to ask me this, but I leaned down and took his hands in mine.

“Yes,” I said, “I’m very proud of you, Henry.” As I said it, I knew it was true.

As I become a better writer and a better mom, I’m learning to abandon expectations. You can’t write the ending before you arrive there. Stories, and children, go where they need to go.

Please note that special-needs schooling, and diagnosis and treatment options, differ greatly between the US and Canada. Autism Speaks is an organization in both countries that can assist and inform parents. autismspeaks.ca

Read more: Is there a better way to integrate kids with special needs into classrooms? 5 ways to advocate for your special needs kid The cost of raising a special needs child