Sharing Our Child’s Diagnosis With Him – A Parent’s Perspective

By Benay Josselson
In A Parent's Perspective

We never had a plan for how or when we would tell R that he was on the autism spectrum. It was not something we spent a lot of time considering because it almost seemed beside the point. R was diagnosed when he was two, but the only difference it made was that it opened doors to getting R additional therapies. Before and after his diagnosis, the only thing that mattered to us was giving R the tools he needed to live a happy and fulfilling life.

To us, R is not his diagnosis, he is just our son. He is funny but also serious, just as interested in, and hyper-focused on, history, geography and maps as he is in Star Wars, Skylanders and Legos. He craves routine, he needs to be reminded to be flexible and he doesn’t like to try new things. At times, he is excited and out of control and at others he craves quiet and being alone. He dislikes playing team sports but loves watching baseball, basketball and football games. He loves his friends but he is not always interested in having playdates. He melts down when he is overwhelmed or overstimulated. He is anxious, sensitive and has powerful emotions, but he does not always recognize everyone else’s feelings. He gets upset if he thinks people are talking about him, or if he thinks people are upset with him.

Needless to say, we were unprepared to speak with R about being on the spectrum when he was 7 years old. Yet that is what happened, and I am thankful that it did. It turns out that while having a diagnosis seemed inconsequential to us, it made a world of difference for R.

R had a difficult time in second grade. We don’t know why, but we suspect it was a confluence of factors which, together, resulted in a perfect storm of hating school, acting out, attempting to exert control over every situation and seeking sensory input wherever and whenever he could get it.

Toward the end of the school year, R seemed to get slightly more comfortable in his skin and his good days started to outnumber his bad days. This meant that when he had a bad day, he really felt it. He wanted to do better, and would get frustrated with himself for having reacted a certain way. One day, R started to cry. He wanted to know why things were so hard for him but easy for his friends. Why did certain things upset him but not his friends? Why does he cry in school but his friends don’t?

As R let his feelings spill out, we realized that R thought he was the only one who felt the way he did, the only one who experienced the world the way he did. We knew this wasn’t true, and our reaction was to make sure R knew he was not alone.

We taught him that; quote for MatanWe had spoken with R in the past about everyone having strengths and weaknesses, but during this conversation, we went a step further. We explained that there are other people, young and old, who have similar strengths and weaknesses as him. That like him, these people had a much easier time with learning how to read and do math, but needed extra help in reading people’s faces and dealing with surprises. That like him, they use different tools like counting and breathing when they feel anxious and overwhelmed. And we taught him that there was a name for this – Autism Spectrum Disorder – and that no two people on the spectrum were identical. If he met someone else on the spectrum, he might find he has things in common with that person, but he might also discover differences, too.

It was as if a light bulb clicked for R. He wanted to know if he knew anyone on the spectrum, which he did. He wanted to know if there was anyone famous on the spectrum, and there was. Together we navigated Amazon to order a variety of books that R wanted to read about different people in history with autism and what it means to be on the autism spectrum.

In retrospect, I’m glad we did not plan for how to tell R about his diagnosis. Our explanation was organic and I am proud of how we handled it. And I am proud of R, too. Yes, there have been times when R has tried to use his diagnosis as a reason for a particular reaction or inappropriate behavior – “It’s my AS!” – but he also quickly learned that AS is not an excuse. We learned that having a diagnosis is another tool in R’s toolbox.

Benay Josselson; MatanThis post is a part of an ongoing series called “A Parent’s Perspective”. The author, Benay Josselson, is an attorney who lives in New City, New York with her two children. We are proud to have honored Benay with the Matan Torchbearer Award at our 2016 Annual Event.