The Diagnosis that Stopped My World from Spinning
In May 2006, on an ordinary day at work, I learned over the phone that my son had autism.
That day, my world fell away and I started a painful descent into depression.
Most people who knew Evan, including me, couldn’t believe that he had autism. But then most people, including me, didn’t know there was a spectrum that included “high-functioning” autism that looked nothing like Dustin Hoffman’s character in Rain Man. After Evan’s diagnosis, there was the occasional look from a teacher or educator that showed me that they knew, but were just not brave enough to tell me, or to suggest that we have him evaluated.
I couldn’t stand those looks. In fact, I couldn’t stand most anything.
In the weeks that followed his diagnosis, I began to unravel.
I am an extroverted person – the one that will always stop and chat with co-workers, friends and even strangers in the store. Yet, I couldn’t bear conversations, especially with people who’d heard about Evan’s diagnosis and wanted to talk about it or offer support.
Everyone meant well. Everyone said it would be okay. “Evan’s so smart and so sweet…you have nothing to worry about,” they’d say. But, everyone did not just have a son diagnosed with autism. The disease that had no known or proven cause…the one with no cure. The one that his evaluation said put him at high risk for isolation, depression and suicide as he reached adolescence. Suicide. My world and the one I’d dreamt about for my son was collapsing.
I was mourning the loss of the future I had envisioned for Evan. Nothing had changed, yet everything had changed. Evan was still Evan…loving, smart and quirky…only now he had a diagnosis. And I was so shocked by it I couldn’t function. I was paralyzed by fear and grief, but I put on a strong face, so no one could see how badly I needed help.
Except for my family doctor – he received copies of Evan’s evaluation and diagnosis and, seeing me in his office one night, asked me how I was handling everything. I don’t know if he could see the pain in my eyes or the strain on my face, but he knew instantly that I was not okay. I burst into tears and sobbed in his office. Even though it was 8:30 pm, and I was the last person on his schedule that night, he just let me cry as he handed me tissues.
He suggested an anti-depressant/anti-anxiety medication. He said it would ease the weight of what I was feeling so I could start to function again and think clearly.
I was anti-medication at first. I’d heard stories from friends about the side effects of anti-depressants, and I just didn’t think I could handle anything more. But my doctor revealed himself to me in a way no doctor had done before. He told me he took the very medication he was prescribing, and that the side effects would decrease in time. I asked him why he took it – he seemed cool as a cucumber all the time. He said his teen kids drove him CRAZY and that the medication curbed his anger and anxiety so that he could deal with them with a clear and level head.
For the first time in months, I felt like someone could relate – and for the first time in a while, I didn’t feel crazy. I desperately needed help, and when it was offered, I took it. This is really important for anyone dealing with a diagnosis – whether it’s their own or their child’s. While asking for help is not easy, it’s essential and gives you strength when you most need it.
Within a few weeks of starting the medication, I felt calmer and I could think clearly again without constantly thinking of how daunting “autism” sounded. While I don’t preach medication to every person dealing with tough life issues, I can say it was a tremendous help to me.
As my pain eased, my passion ignited. I spent weeks searching reputable medical websites for all the info I could find on autism. I bought books on how to cope and read them almost overnight. I called every child health expert I knew to make sure I was doing the very best for Evan. I consulted with education teams in the county and learned about individual education plans (IEPs), least restrictive environments (LREs), applied behavioral analysis (ABA) and a dozen other autism-related acronyms.
I went from being a barely functioning mess of a mom to a mother warrior taking on autism for the sake of my son. And I soon realized that I was far from alone.
Read my previous columns to see how we started our road to Evan's autism diagnosis, and follow over the next few months as I share what we learned along the way.
The Beauty of a Brass Doorknob
God (and an Autism Diagnosis) is in the Details
How Ketchup, Mustard & Relish Helped Me Make Sense of Sensory Processing Disorder
Autism and its Puzzling Pieces