When my son was diagnosed with high-functioning autism spectrum disorder when he was 10, the phrase I heard more than anything else from well-meaning people was, "He's still the same kid." I would nod politely and scream inside my head, "That's not possible! He's labeled now: a scarlet A for Autism!"
Now, I can look at those words and understand that they come from a place of love and compassion and they are true after all.
Our autism journey was unique, as all of them are. What used to be called simply "autism" was changed in 2013 to reflect the huge differences in how the disorder looks, sounds, feels and is diagnosed. Autism Spectrum Disorder reflects those differences and the huge range in experiences with the disorder.
I had suspected for years, deep down inside where I dared not go too often, that something wasn't quite right with my oldest son.
He was just a little bit different, but not in the ways that were typically connected to ASD (autism spectrum disorder). He didn't really have more than one friend, but he was hyper-aware of people's feelings. He didn't have repetitive speech patterns or echolalia, but he did go through periods of intense obsession with one topic (his childhood is measured in eras: firetruck era, tractor era, race car era, ocean animals era…)
I kept waiting for a teacher or a pediatrician or someone to notice, but no one did, so I chalked it up to being an overly concerned first time mother and just loved him as he was.
Elementary school was marked by one difficult year after another, trouble with reading, trouble with math, no real connections. By the time he was 10, we were concerned that a learning disability might be the issue and had him tested by a pediatric neurologist. The results were not a learning disability, but high functioning ASD. And from that moment on, our lives were not the same.
Those first years after his diagnosis were marked by IEP meetings, conversations with Special Education teachers, worry about social relationships and anxiety about whatever stage came next. Mind you, this was all me; he was busy being an 11-year-old boy in his first year in middle school.
Much to my disbelief, middle school became the place where he finally flourished and came into his own (because I hated middle school I was preparing myself for the worst). A good year in sixth grade was followed by a better year and an even better year.
After his diagnosis, I changed my expectations of what his future would look like. My husband and I decided that whatever path he wanted to take in life, if it made him happy, we would support it. Maybe he would live with us longer than a neurotypical child would have. Maybe he wouldn't get married. Maybe his life would look different than ours did.
But guess what? We were wrong. After his diagnosis we wrote off so many possibilities in our minds and in our hearts and we didn't need to.
What we needed was to give him time to grow and time to succeed. Because, with each new success he experienced (and we experienced with him) that annoying phrase I heard over and over again ("He's still the same kid!") became more and more true.
He was what some people call a "late bloomer" because by the time he reached his sophomore year in high school not only was he successful, but he was successful beyond anything we could have hoped for him.
He finally figured out school (it's important!) and friendships (find your squad!) and personal responsibility (yeah!) and those expectations we had mentally and emotionally written off years ago, bloomed again. He's joined a team sport, has a strong group of friends and is talking about college in a very serious way.
That's not to say things are picture-perfect, just when I congratulate us on having all this autism stuff "figured out," a new situation or experience brings me back down to earth. This isn't something that we will "cure."
When he was 10, we described ASD as his brain working differently and I still believe that's just what it is. There are some things that will always be more challenging for him than for a neurotypical kid.
Recently, when I was driving him to rowing practice he asked me some hard questions. One of those questions was, "Do you ever have a time where you just don't know what to say to someone and how to talk to them and they think you don't like them because of how you react?"
Hmmm. How to answer that one. I had to say no, I don't, but this is what else I said:
"That might always be difficult for you. We can practice and fill your toolbox with tools for you to use in that situation, but it might always take a little extra work. But, you know what? Everybody has something like that. A burden they carry. A challenge. Even something they're ashamed of. You're not alone."
He was happy with that answer and turned his attention back to his phone. I breathed a sigh of relief that the right words had come to me at the right time.
Knowing what to say and when to say it isn't my burden, but what I've learned over the years is that giving up too soon is. I had written off my son's future before he had even dipped his toe in it and I was wrong. Everyone's journey with autism spectrum disorder is unique, just like every other human's journey.
From now on I'm not going to grab the wheel and steer, I'm going to let him lead me. I can't wait to see where we go.