A Parent’s Journey Into Autism

A Parent’s Journey Into Autism, Part 1: That Fateful Day

The life-changing moment of Alex’s diagnosis was a long time coming. In his first year, we were slow to realize that something was different about him. He did not take to breastfeeding right away and he had horrible colic, screaming unremittingly for hours every afternoon. He had a very difficult time transitioning to solid food, gagging and rejecting the tiniest amount of texture. Going from pureed to chunky baby food was arduous, and going from there to “real food” was excruciating. He was also slow to hit the milestone of rolling over onto his belly, but the doctor just said that was because he was big.

We didn’t see a connection between each of these challenges, and no one initially suggested that anything was wrong. But after the first year, the signs became more numerous. His childcare provider, “Tia,” noted at 15 months that he didn’t turn his head when she called his name. When we dropped him off at Tia’s apartment, Alex would cruise the perimeter, touching the walls, cabinets, and appliances, but showing no interest in Tia herself.

Alex acquired words rapidly, but only used them for one purpose: naming things. If you pointed to a chair and said, “What’s this?” he would respond, “chair.” That’s all well and good, but he never asked a single question or made a single request. Toddlers routinely request things, even if only using one word, such as “up,” “juice,” or “ball.” Alex never asked for anything. He also didn’t point to things, but that particular behavior wasn’t even on our radar screens.

Between 15 and 18 months, we started asking professionals and family members what they thought. Everyone assured us that he was just fine. Finally, when I brought him to a second pediatrician at age two, she acknowledged that his language use was a concern. He spoke dozens of words, but Mom and Dad weren’t among them. (I was so thrilled to hear him speak his first word that it never dawned on me that “cat” was an unusual choice.) She said if Alex didn’t start saying our names within a few months, we could have him evaluated by Early Intervention (EI) for free.

A couple months later we did just that. Two or three young social workers came into our house and spent hours running Alex through test after test. When they finished, to our surprise they appeared shaken. But when we pressed for a diagnosis (we suspected ADHD), they demurred, saying they weren’t qualified to diagnose. But we persisted. We couldn’t wait for yet another evaluation to have some clue about what was going on. They reluctantly admitted they had detected delays across the board. Pervasive developmental delays.

We almost laughed at this finding. Pervasive delays? This kid was walking, talking, laughing…what else did he need to do to prove he was practically normal? Besides, these therapists were so young, and they had told us they weren’t qualified to diagnose. But we made another appointment to be on the safe side, this time with a developmental pediatrician at LADDERS, someone who would indeed give us a definitive diagnosis. And boy, did she ever.

By the time we made it in to the LADDERS clinic, Alex was 2-1/2 years old. We had been wrestling with questions about him for over a year. Finally, the hammer was about to drop. The doctor spent a good bit of time with us, mostly asking about his development, but also interacting with him and observing him for a bit. Then she delivered the news. “Alex has autistic disorder.”

It was one of those rare moments when I knew – at the very instant it was happening – that my life would never be the same.

Autism. Autism. Wait, this was our kid she was talking about. Big, bright, and beautiful. Was this some kind of joke? I had seen autism at a graduate school practicum in Bellevue Hospital – pale, ethereal children toe-walking through the ward. We had read in the textbooks that the incidence was incredibly rare, maybe 2 or 3 in 10,000. Plus, tragedies didn’t strike me. Nothing terribly bad or difficult had happened to me in my first 38 years on the planet.

And yet. This doctor was an expert. And the EI clinicians had said he had pervasive delays. Did Alex really have autism? Good God.

The rest of the appointment passed quickly. The doctor said we might look for a behavior therapist and read a book, Let Me Hear Your Voice, to learn more about autism and ABA (applied behavior analysis). And come back in six months. Oh, and one more thing – we might need to put him in an institution.

We left the clinic in a daze. Autistic disorder…autistic…we were entering a whole new world. I might be a psychologist, but I was a neophyte in this area. Being the intense person I am, I attacked this new project with fervor, reading not one but many books on the topic, attending conferences, seeking out therapists, and more. It was December 1999, the beginning of a lifelong journey, and I didn’t have the faintest clue where it would lead.

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