After a very long week, my husband and I met up at a non-profit organization’s social hour on Friday evening to support their efforts. With how busy last week was, he on a business trip and me managing the kids and all of their afterschool activities, it was also a nice date night for us. Several times during the evening, together, we had the opportunity to share Ronan’s story. When I find myself in a situation where I can talk about what happened to my son with a roomful of strangers, I make a decision – tell them some of what happened to him, or tell them every single, little detail of his life story.
This time, I kept the story simple.
Those who asked about him were told that Ronan has quite a few medical complications that require on-going care and treatment. Some were sympathetic and wanted to know more. So I shared a little bit more. But not everything. That meant, this time, I kept vaccines out of the conversation. In the past, I’ve been much more descriptive like in what I recount below. It’s an older story that I’ve shared elsewhere. While I easily could’ve had this same exact conversation over the weekend, I wasn’t ready to go into every detail. They’ll be other opportunities for that. I’m sure of it.
You subscribe to that? Really??
I’ve witnessed a few camps in the autism community over the years. There are those who adamantly believe that autism is caused by one contributing factor. Some believe that it's many factors. And there are others still who choose not to focus on the cause at all and instead call simply for more awareness. Those in the first and second camps rally around education and prevention. Those in the third prefer to focus their energy elsewhere. Certainly other camps exist. As far as I know, not one cause or treatment has been identified as yet.
I don’t fall into just one camp. Autism is a spectrum disorder. I believe that several factors can lead to an autism diagnosis. The more I’ve read over the years, the better a perspective I’ve gained about those factors and about the disorder. When I'm asked about what happened to my own child, I share what I've read. I also share what I know happened to Ronan.
I had a conversation with someone about autism about two or three years ago. After some small chit chat, the person I was speaking to asked me about my son. He’d noticed that something was different. The more curious he was about Ronan’s diagnosis, the more questions he asked.
So, Ronan was typical at one point?
When did he change?
What did the doctor do?
Can you trace it back to something...like an allergy, an illness? Did he fall? Did he hit his head?
For each question asked, I offer an answer.
Yes, he had stellar APGAR scores and had reached several milestones as a baby.
But…Ronan changed over time.
The doctor? Oh, we got the let's-wait-and-see attitude. When Ronan was still struggling, we got the boys-are-slower-than-girls excuse.
Yes, I can trace it back to something. After each vaccination, some *thing* happened...
Before I could finish that thought the last time it was part of a conversation, I was interrupted.
“Wait. You think it was vaccines? You…you subscribe to that?"
Without hesitating, I replied, “Yes. Yes, I do."
And then I got the look. I’m used to the condescending look, but I still don’t like seeing one shot in my direction.
“Yes. Vaccines did some *thing*. It was shocking for us to learn that.”
The look, that look, stayed on his face. I added, “If you’d like to see his shot record and a medical timeline of what problems started when, I can show you.”
“No, no…I, uh, don’t…so. The vaccines? You know they’ve done so much for modern health care.”
Clearly we were in different camps.
I wanted to respond with, “Oh, I know all about what vaccines have done,” but I held back. Through this fellow’s non-verbal communication – the look, the disbelief, the now folded arms, I knew our conversation could go one of two ways. It would either fizzle into an awkward, “Well, um, thanks for sharing,” or it would turn into a debate. Not wanting a debate, I steered the conversation into another direction.
“Yeah, so that’s what’s going on with Ronan. It hasn’t been easy. He’s got more medical issues now than he did before. His therapy, the frequent doctor’s appointments…it’s tough. But, gosh. We do everything we can for him.”
The gentleman looked around and sipped his drink. I could tell he was planning his exit strategy.
He raised his glass. It wasn’t a Cheers to YOU, Cat! sort of gesture. It was a reason to walk away.
Looking at his glass and then at me, he said, “Well, Ronan’s a lucky kid.”
“Yep. He sure is.”
"I’m getting a refill…do you want one?”
“Nope.” I smiled. “I’m all set, thanks.”
As he walked away, my smile faded. I repeated his question in my head, “You subscribe to that?” I do. I do because I know what I saw. I do because I can confirm what I saw because of the reactions Ronan had. I could’ve told him that some of our doctors agreed that some *thing* happened also. But some people don’t want to hear that. They refuse to see it, too. As much as I had thought that telling Ronan’s story would make a difference for that man, it didn’t. He and others have their reasons for not wanting to hear it, for not wanting to see it, and for not “subscribing” to it.
We don’t all fall into the same camp because we each have our own opinions. People have strong opinions about certain issues: religion, politics, money. Many more now have strong opinions about vaccines, too. We have the right to form our own opinions and to focus energy on issues we feel most passionate. My energy will always be focused on Ronan. For Ronan, and for the other children whose parents also subscribe, I’ll continue to do whatever I can to help.
Cathy Jameson is a Contributing Editor for Age of Autism.