It took the neurologist all of five minutes to diagnose my daughter with what I had spent three years wondering about. She is the one in every 58 kids (or whatever the statistic is today) with autism. I was ready for it, but yet not. I kind of knew it, but sort of didn’t. This diagnosis changes nothing and everything.
Society is not made for people with autism or any differences for that matter. It took me four days after the diagnosis before I even cried about it, and it’s taken me a couple weeks to sit down and write about it. The bottom line is, things will be harder for my daughter, and as her parent who wants the best for her, that is a hard pill to swallow.
As I have struggled through processing my feelings about her official diagnosis, I have been reminded over and over that society isn’t ready to accept people who are different.
I heard a mom complaining that there were too many kids with autism in her daughter’s summer camp.
I read an email that had been written to the mom of a child with autism in which the author wrote that it wasn’t her problem that she (the mom of the child with autism) had reproduced a defective child.
And when I told a very close relative about my daughter’s diagnosis, she responded by saying she didn’t agree with labels. Autism does not make someone “less than” or defective, nor is it a label. But how can I convince someone who otherwise seems to have already made her mind up?
I have also read things written by others in which they wax poetic about autism – how it’s a “superpower”. People use words like “beautiful” to describe it. It’s not those things either.
Autism is defined as a neurodevelopmental disorder characterized by an impaired ability to form social connections and to communicate with others. It’s a spectrum disorder.
The mom with a daughter in an inclusive camp, the author of the email, and my relative are all stories that drive the point home that things will be harder for my daughter, as someone with autism. Other people’s antiquated knowledge and lack of compassion contribute to the stigma that surrounds the diagnosis. These things are what keep me up at night, not autism.
At one point in our assessment with the neurologist he looked at me and said, “You knew. You knew she had autism, right?” I said, “Well sort of.” The truth is I didn’t know. I wondered, sure, but always hoped it was something that we could get past. Her developmental delays were less significant, and she crushed her IEP goals last year. Cognitively, she is functioning on par with her peers and with some things like colors and numbers, she has scored in higher ranges for her age.
But there is no denying she goes into her own world, and she does it often. She disappears into conversations with herself often with a stick in one hand, during which time her speech becomes rhythmic, almost musical. She goes there and stays there while we walk through the zoo or along a nature trail. She is happy there, and those are the times when I want to reach into her world and connect with her, but I can’t. I feel lost in those moments. I hoped that one day I wouldn’t always feel that disconnect from her world, but I likely always will.
Autism is not an excuse – the neurologist reiterated this point several times during our discussion. He explained that she has the ability to learn anything and autism cannot be an excuse for her to behave poorly or not do things when she is cognitively perfectly able to do them. She is capable and has full potential, he said. He said socially she is like an anthropologist on Mars and every day is new to her with regard to her social interactions. But, she is capable of learning how to navigate these situations. It will take time. It will not be easy. But autism is not an excuse.
My daughter is and always will be much more than a diagnosis, but autism is a part of her story. It is a part of who she is and who she will be and it is why we will continue to go to therapies, act out social scenarios, and talk about emotions. It means we will always have an IEP in school. It means she will see a neurologist throughout her childhood. It means she will meet more therapists and learn things differently than her peers. It will be threaded into the background of so many of her life experiences. She will grow up and become whatever she wants to be and she will always have me on the sidelines cheering her on.
As for me? I am an emotional person, but I usually manage to maintain a stoic public presence thanks in part to my job, which has provided me plenty of opportunity to be expressionless in the face of public criticism. But when it comes to my daughter? All bets are off. I am a mess of emotions and I will fight tooth and nail for her (but mostly with words and decisions). I will fight for inclusiveness because I believed in it long before I had a daughter that would be in need of it. I will cry a lot. I will cry when she struggles, when I feel defeated and at a loss as to how to help her through whatever challenge she faces. I will keep celebrating her firsts, her accomplishments, and all her creativity.
I will smile on the good days and dig deep for more patience on the not-so-good days. I will hug her when she lets me, hold her when she needs me to, and I will make sure she knows that I believe in her. Mostly, I will always wish for a glimpse at the world through her eyes so that I could understand her experience and the ways in which she sees the world.