I Did My Own Research On My Son's Autism Diagnosis, And I Don't Regret It

Going to kindergarten is a major milestone in a child’s life, and we took time to prepare our son for his first day of school. He’d always been a bundle of energy, and he was whip-smart. He had talked early and had learned how to read when he was 3. He also was very imaginative and got lost in pretend play. He was excited about going to school. 

He was a bit rambunctious and unfocused, and he’d been diagnosed with ADHD. But aside from taking medication to help him focus, there was nothing we thought was out of the ordinary with him. So, I was unprepared for a phone call I got after my parents had visited shortly after his 5th birthday that July.

“I talked to my doctor, and he says my grandson is autistic.” My mother said this authoritatively despite never having discussed the possibility with us before. My parents had just visited us, a rare event given our fraught relationship and their stringent and judgmental approach to parenting and grandparenting, and Mom apparently had an opinion on their observations during the visit.

My gut reaction was to reject the whole notion. I screamed at my mother that she was wrong and that I knew my son. They lived four hours away and didn’t see him much. Surely, I knew his state of mind better than she did.

My reaction was partly because of the dismissive way she’d made her proclamation and the fact that she’d discussed it with her doctor but never with my husband and me. Besides, I’d worked with autistic adults, and our son’s behavior didn’t line up with what I’d experienced. He loved meeting new people and interacting with people on an almost adult level despite his age. We never saw his behavior as anything outside the norm.

Our son always had his own unique approach to life. He loved books and pretend play and could tell amazing stories. He didn’t enjoy sports or running or climbing on the playground equipment much, but we didn’t push the issue. We worked closely with his teacher to help him make the most of his talents. 

We continued with this approach throughout his elementary school years. He thrived academically and always followed the rules. We worked with him to help him feel more comfortable in social situations, believing that his limited attention span was at the root of any challenges he faced at school. 

We were very hands-on parents. We researched everything about ADHD, but in our dealings with his teachers and school administrators, there always seemed to be something left unsaid. It was like there was an elephant in the room that we didn’t know about. 

Autism still didn’t make our radar, though, until he was 11 when we saw a story on the news about what was then called Asperger’s syndrome, which is now referred to as being on the autism spectrum. Suddenly, things clicked into place. Children with Asperger’s connect well with adults but have trouble forming close relationships with their peers. They often struggle with coordination and engage in repetitive activities to soothe their anxiety. The story described our son to a tee. We felt like we had some answers, like we finally understood him.

We took him to the psychiatrist to confirm the diagnosis. She explained some interventions that would be helpful, and they seemed a lot like the techniques we’d been researching all along. I wondered if we could have done anything differently had we started these interventions when he was 5. Still, all the research and strategizing and close contact with teachers and other parents on our son’s behalf had gone a long way toward helping him with what he’d needed all along.