Shortly after the diagnosis, I remember making small talk with acquaintances, gabbing about our children, school, and other typical suburban parent dialogue.
I decided to test it out and see what it would feel like to guide the word from the realm of my personal thoughts to the ears of the unsuspecting listener. I wanted to witness their reaction. I longed to know if I was brave enough to say it out loud.
I imagined that by saying it out loud, it would make it more real, not just something I was imagining or hoisting upon my child.
The word “autism” seemed to flow steadily and calmly from my mouth. My heart, on the other hand, could have jumped out of my chest at the rate it was pounding.
I braced myself for a reaction. My feelings were still raw and tender. I still doubted myself and the diagnosis. The reaction I received was not unlike what I had been expecting. A flippancy, as if it was no big deal, as if a diagnosis was unreliable and even unnecessary, and this from a person who had never met my child.
As I tested it out on people who knew me better, I received mixed opinions ranging from “He seems fine to me,” “All kids have their quirks,” to the judgments of “Why does it even matter?”, to the sentiment that labels should be avoided at all costs. It was shortly after the diagnosis, sharing with people, and enduring their reactions and judgments that I decided it was better to keep it quiet. Better to not share this part of my life.
Maybe they were right. Life would be better for my son without labels or diagnosis. Besides, according to the public school system, he was not in need of extra services or considerations. I must have over-exaggerated on the surveys and questionnaires at the Developmental Pediatrician for whom we waited over six months to see. Six long months of wondering if we were crazy, yet knowing deep down that something was different about this little one.
You see, you weren’t there when he would only wear shorts to preschool even in the biting cold. You haven’t noticed his raw hands and arms from where he wipes his nose because his aversion to tissues is so great.
You weren’t looking out the window at a little boy on the curb fascinated by his fingers dancing in front of his face while all the other kids biked, scooted, and ran about him, and your husband said, “I think there is something distinctive about him.” I bet you didn’t know he could spend hours sorting and arranging M&Ms at the kitchen table. You weren’t by his side when the broken taco shell brought tears for over an hour.
All these seemingly disconnected moments added up to the conclusion that perhaps neurotypical did not describe him. In all honesty, I guess I was seeking a diagnosis—something to assuage my guilt of being a terrible parent, of not being able to get my child to listen and adhere to the guidance being given.
I was searching for a reason why everything was exponentially different and difficult with this one. Every morning getting ready for preschool was exhausting; getting him out the door and then in the door was a challenge each and every day.
There were times we just slumped together—one in tears, the other choking them back—in the corner of the hallway desperately trying to get what each of us wanted: me for him to go to class, and him to return to the safety and familiarity of home.
It has been two years since the diagnosis. Two years since we left traditional school for something more manageable for the both of us—the whole family, really. With the steadiness of a comfortable environment, predictable routine, and much fewer times of transition, it almost seems as if the diagnosis was wrong.
There is nothing atypical about my child. Yet, I watch his beautiful mind interpret the world in a unique and atypical manner. I remember the year of bi-weekly occupational therapy to assist his fine and gross motor skills that were way behind a child of his age. I relive the totally unexpected meltdowns that could last for hours.
Conversely, I observe him drawing and creating for hours on end with steadied focus. I know the diagnosis is not wrong. I know that without it, I would have parented this extraordinary child differently, in a detrimental sort of way. I know a diagnosis is not carte blanche for any sort of behavior but, without it, I would be sorely lacking in empathy, patience, generosity, and gentleness. In short, the diagnosis made me a better parent and human being.
What I don’t know is if when I meet you and we become friends, if I would tell you this because it feels so deeply personal. And, to be honest, I probably care too much what you will think of me. Will you think I’m making this up? That I’m over-exaggerating? That labels aren’t necessary?
Or, perhaps, that because his case isn’t severe it’s not worth mentioning? Maybe you will, but I’m learning to be okay with that because whether you believe it or not, care or not, I have a son on the autism spectrum and that touches every aspect of our family life.
Perhaps even more greatly, I care about how you will see my son. That you will look at him with eyes of pity, examination, or judgement and miss the creative, focused, gentle child who interprets the world in his own beautiful way. But, I don’t think you really will. I believe we live in a time endowed with such incredible knowledge of language, understanding, science, and psychology that we are better equipped than ever to regard our fellow humans with generosity of spirit and dignity.
We know all too well that everyone has an untold story and deserves to be handled with love and care in vulnerable, volatile, and mundane moments. So, while we have fleeting moments of judgements, those almost involuntary perceptions do not need to become final rulings and grace can be generously doled out, creating a world where we don’t need to be afraid to share our thoughts, our dreams, or even our diagnosis.
This article was featured in Issue 104 –Transition Strategies For Kids With Autism