The early days of an autism diagnosis

By Katie Read
@childshouldblog

“Well, at least he has one friend now,” I said, “so that’s a good sign!” My voice was a nervous octave too high. I was on the phone with a behaviorist I had never met, who had observed my son at preschool that morning.

And I was bracing for bad news.

“Well, he actually seemed a bit too obsessed with Jace,” she said. “He said ‘hi’ to him at least ten times in the hour I was there, and kept telling other kids that Jace was only his friend, like he wanted to keep them away.”

My shoulders slumped. I knew she was right. I knew my son’s obsession with this first little friend showed detriments more than strengths: that the flexibility of young friendships left him totally confused, and he was destroyed each time Jace played with other kids. He had no idea how to join in.

She paused for a second. “This is common with autism. We need a lot of work on his social skills.” She said this slowly, like she was educating a third-grader—like I had not spent the eight weeks since his diagnosis Googling day and night.

Moderate autism. The word moderate was like a pinball I kept bashing around in my head, refusing to let drop. Mild I could handle. Extremely mild I had hoped for. Moderate was something you didn’t want to research, as I had learned the hard way. Supported living. Unemployment. Bullying. Depression. 

I looked over at Mikey, zoned out to Curious George, hugging his little blanket to his chest. He saw me looking and climbed into my lap, his whole body tucking into my left side: our comfortable cuddling position. You’re crazy, I wanted to tell the behaviorist. He’s cuddling me right now and he’s sweet and cute and not even a little bit autistic.

“I know, I know he needs help,” I actually said, in weak agreement.

It was useless to protest. I had already tried with the diagnosing doctors. He points! He talks! He makes eye contact! He can’t be moderate!

“Mrs. Read, you are just used to him,” the Autism Clinic director had said. She was all soft brown edges, sharp brown eyes. “What you see as mild is really moderate. He meets all the diagnostic criteria. Not severely, but moderately.”

I had a strange out-of-body moment right then. Three things at once: I fought back tears, had a brief spell of dizziness—and felt a sudden pang of sorrow for this doctor. Such a terribly sad specialty to have. She probably did this two or three times a day: looked into a mother’s eyes, grabbed the book of dreams that mother had written for her child, and gently held eye contact while she tore out some pages.

Mikey had been beside me in the doctor’s office, oblivious, eating the fruit and crackers I had packed for this long, long morning. This before-and-after morning.

Back on the phone, in my living room, the behaviorist was outlining his treatment plan.

She knew nothing of my plans. She didn’t know that in my plans, my children would never be teased, would never feel sad, would get honorary doctorates from Harvard just because. She didn’t know that in my plans they would ace every test, have a host of gracious friends, star on Broadway, want for nothing.

Nowhere in my plans was talking on the phone to a stranger about teaching basic social skills. Nowhere in my plans was autism.

I hung up and Mikey looked at me. “Why did you say ‘preschool’?” he asked.

“Baby,” I sighed, “you can’t keep saying ‘hi’ to Jace all day long.”

“But I love Jace,” he said, smiling happily. Then his face fell. “But today he was not my friend because he talked to Benny instead of me. So then I had to walk alone outside, and I had so many things to tell! But he wasn’t my friend, so I had no one to tell.”

I don’t know how these behavioral therapies will teach friendship, teach flexibility, teach him to manage the crushing rejection every time little Jace talks to someone else.

My babbling on about the nature of friendships gets us nowhere. My psychotherapist license is useless here, in my own living room: I don’t know how to fix this.

“Baby he’s still your friend even when he talks to other people, remember?”

“Yeah. Hey, Mommy, look at my light saber.” He waves the green pool noodle with black and silver duct tape around the bottom.

“Yes, I see it, are you listening?”

“Yeah. Hey Mommy, do you want the red light saber or the green?”

I give up. I pick up the red pool noodle for battle.

I don’t know if he’s going to cure cancer. Lead a team to victory. Write angsty teenage songs on an old guitar in his bedroom.

His green light saber bumps my leg.

“Direct hit!” I yell, falling to the floor.

I look at my nails, peeled anxiously down to nubs. I look at the toy-minefield of my living room. I look at the deodorant stain I didn’t know I had on my shirt.

Let’s face facts: in this Pinterest-parent world, I’m barely managing my own life.

I think back on my faded childhood dreams: millionaire, astronaut, president. None have come true, except these: meet a nice man, have a happy family.

Mikey sits down on my stomach, beaming. “We can both be winners, Mommy!” And he is right, and I am happy, even if it didn’t turn out exactly as I’d planned.

Katie Read is a writer, Marriage and Family Therapist, and mom to two young boys with autism. She was 35 when she had her first son, and the doctor wrote the word GERIATRIC in big block letters across her file. Perhaps this explains her losing streak in light saber battles. She blogs here. Geriatrics welcomed.

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