There was a time when I didn’t want to ever hear the word again. There was a time when it was the only word I could think of. But here we are, two years later, and I have found a happy medium. Finn’s autism is not a mask that disguises who he really is. His autism is not a burden that we shoulder. (And it certainly isn’t a cape that makes his mother a Superhero, although some days I wish it would!) Among its great, many challenges, we have found just as many unexpected gifts.
So on this day*, I commemorate the day Finn was diagnosed with autism.
I remember the day like it were yesterday. Summer was just around the corner. Charlie’s Kindergarten year was winding down. The outfit (socks with thong sandals, ew gross!) the psychologist wore. And then it all crashed down around me. I described it as “little birdies chirping around my head.” I felt shattered. Betrayed. Scared. I felt guilty that I didn’t know sooner. I lived in a sad place for what felt like an eternity, but amounted to about 3 months.
Since those scared, early days, I (and Finn) have come so far. It took a few months, but I emerged from my fear-induced stupor and began embracing autism. I no longer wanted to debunk the diagnosis. I needed to accept a new normal and look at my child through a new lens. And the single most helpful thing that I did was find autism bloggers– other moms who have autistic kids, other adults who have autism. I stopped letting books tell me what to expect from my child and started letting Finn tell me. And I let those other moms fill the holes of my heart with hope.
With the help of other writers, I found my own definition of autism. And it is not something to be feared or dreaded. It’s funny because I vividly remember Finn’s 3rd birthday. I knew the “red flags for autism” and that most of them were evident by age three. I remember thinking we “got passed” the red flags. I thought, “he hasn’t regressed or lost skills. He responds to his name. He doesn’t spin or stare at moving parts. We are ‘in the clear!'” Those ridiculous red flags for autism are precisely the problem. They perpetuate the fear. They prescribe to this “all or nothing” mentality that makes you feel like if your kid “passes” you’re golden, but if he doesn’t, you’re doomed.
I wish I could go back to Finn’s diagnosis day and choose a different path. Not for Finn, but for me. I wish I could’ve told myself how fruitless reading books and combing the internet would be. How reading lists of deficits and assigning characteristics to a disability are detrimental to everyone involved. I expected the diagnosis to tell me more about my child– more than I already knew. I looked at the diagnosis as a prescription for what my child could and couldn’t do. How could I have done that to a 3 year old? Everything I needed was sitting right in front of me. A little boy who needed patience, love and understanding.
Who doesn’t need that?
I, like so many other mothers out there, went searching for a person, child or adult, who “looked like” my child. Someone who could make autism “look like” something that Finn would grow to be. I now know how ridiculous that is. There is no adult out there that is Finn in 20 years any more than there is an adult who is Charlie or Henry or Tallulah’s future selves. It’s absurd!
When Finn surprises me by something he does (like ask Charlie if he needs help or apologize when he saw my swollen face after a root canal) I realize it’s because I had a very limited (an unfair, socially prescribed and mainstream) view of what an “autistic” person does. Subconsciously, I allowed those narrow views of autism permeate my thinking. instead of seeing my child for who he is– autistic or not. Not everything he does falls into one of two categories: autistic or neurotypical.
His skills are not stagnant. He is still a little boy who will grow and learn just like any other child. Yes, some stages take a little longer to get through and sometimes his skills regress, but I refuse to let a label tell me what to expect from my kid. It’s as if at Finn’s birth the doctor gave me a list of things that Finn would only be able to do since he were a boy, like “play with trucks, date girls and grow up to be a construction worker.” It’s insane. I don’t know why I ever let anyone make me assume one set of expectations of my child simply because he has autism.
I said it last year, in my first “D Day: A year in retrospect” post, and I will say it again, I am thankful for autism. It has made me a better parent. It has broadened my perspective of parenting, and humanity, and gratitude, and life. Some paths in life we choose. Some paths are chosen for us. I am happy all the same.
* Editor’s note: The actual day is June 14th. I just got around to finishing this post today!