I have a confession to make.
Today was the first time that I told our son he had autism.
He is 7, going on what feels like 18, but will be 8 this summer.
I can’t say it hasn’t come up before.
And I must say that the reason I haven’t told him before is not because I am ashamed or afraid of the label.
Truth is… knowing about autism was a game changer for us… and in many ways, saved my life as a mother.
Being told about the neurowiring was the life raft I needed when I didn’t even realize I had just found myself out at sea with no concept of where any land might be found, treading water…
And despite studying communication for nearly two decades, with many years on stage, learning scripts or speaking freely in front of large crowds… something about that conversation I just haven’t been able to have.
At least not with Jack.
I think I could have had it with Luca at any point, and he would have just taken the information for what it was, and kept on going.
I’m sure some may be quick to assume that is because of Luca’s communication deficit, but that’s where you’d be strongly mistaken.
Our Luca understands so much more than this world gives him credit for. As he continues to find his words with great strides every day, never once have I ever doubted the information he is able to take in, process, understand, and store as needed.
If I were to say to Luca, “Luca, my love, did you know you were autistic?” I’m sure his gorgeous wide eyes would look up curiously, awaiting an explanation. Almost like an index card with a word on the front, definition on the back, ready to black-and-white understand that words have meanings, they are what they are, and no emotion tied to the facts.
But for Jack… even as I type I tear up and feel my chest tighten… for Jack, my fear is that he’s going to feel every bit of what society has wrongly done to the label… that he will pick up on the “difference” associated with the word, but worst… the “less than”.
This label that set me free, not only as an adult, but as a child who grew up wondering what was wrong with her… doing everything I could to mask, perform, be what everyone else needed… when I learned about autism, and really got to know it- for all it’s incredible magic and beauty in the difference of it… I felt freedom and relief beyond words.
Because yes, there is power into being one’s true self, and authenticity in being who the world made you to be without restraint… but this world can be mean and cruel and judgemental. And for the way that Jack is wired, in such a similar way that I know myself to be, I just wasn’t ready to go there.
And then, we found ourselves this morning, talking about how it was Autism Awareness week at school… and that he got to wear a crazy hat or crazy hair to celebrate how we are all wired differently… and as we brainstormed back in forth while we stood in the kitchen in our pjs… I blurted out… “J, do you know what autism is?”
Those moments… the ones you think you can practice poetically in your head where you’ll say just the right thing and it’ll be something that saves your child when he needs it most… this was supposed to be one of those moments…. And I have to confess, I may have tanked it…
His body got still and he replied “No?”, watching me for an answer.
I put down the lunches I was working on to face him, and got down to his level, took a deep breath and reached for the only thing I could to get myself out of the conversation… “It just means your brain is wired differently… like you think about things differently… the way you see the world is different from some of your friends.”
I watched him process, and start to nod as he understood. So I continued…
“Jack, did you know you have autism?”
As I said it, I immediately wished I could take it back. Not because I didn’t want him to know… but I felt like I threw myself on stage in front of 100 people without knowing my lines, and a showrunner MIA by the curtain to save me.
“I do?” He asked.
“You do,” I continued. “And so does Luca, and Alex, and Mommy. We all think differently. We like different things. We see situations differently.” He started to walk when he does when he needs space to think, and as I watched him begin to circle the island, he said, “so like, how I go to Speech, but my friends don’t?”
PHEW. I began to breathe again thinking- ah ha! My stagerunner! Saving the day!
“Yes, exactly. But it’s not just about knowing the words to say, right?” He stopped walking, so I continued… “You know how Ms. Jen has those awesome thought bubbles that are different colors that she holds up while you work?” He nodded. “Well, what does it mean when she holds up a green one?”
He answered with a smile, “She likes what I”m doing.”
I nodded assuringly, “Right, exactly… and what color does she hold up when she feels uncomfortable about your choice?” He thought for a minute and said, “Red or blue?”
I went with it because for the life of me I couldn’t remember.
“Right, buddy. See, some friends don’t need Ms. Jen to hold up the thought bubbles because they just know… they already know how to read someone’s face or body language to know if who they are with likes what they are doing or not. Does that make sense?”
He nodded and was seemingly on board, and then he started walking around the island again.
“Ok, so we are wired differently like a plug in an outlet?”
I kicked myself at not just being straight with him… everything is so black and white, but I hoped this one time the analogy could click.
“Yep, in our brain are all these neurowires that connect us to how we understand people, things we like, what makes us happy, and what makes us sad.”
He stopped walking.
“Oh….” he smiled, “like how I like Sonic?”
BINGO.
“Yes, bud. But do you just like Sonic? Or do you like really really really like Sonic?”
“I really really really like Sonic. Like forever.” Right about here is where the ADHD kicks the conversation to a quick close as he looks at me directly and says “but Mom, what am I going to wear for a hat?”
I laughed and he went down to the basement to hunt for options while I went back to making lunches.
I have no idea what I sent him off to school today thinking.
I really can’t prepare him for what his classmates might say as they as their amazing teacher tries to navigate the conversation at an age appropriate level.
I couldn’t stop wondering what he will do, as I ran my miles on the tread this morning, when the teacher explains today that friends in class have autism…
He may stand up proudly and say “I have autism.” And repeat word for word what I told him today… in our kitchen… in our pajamas as I made him the same lunch I’ve made him every day since he started first grade… making his friends laugh as I’m sure he’ll finish whatever he says with a dance move and a bow.
And who knows… maybe if he does, it’ll give his classmates another example of what autism can look like, one that isn’t just what society has shown it to be for decades, because it will give young minds examples of what a spectrum looks like and how different can be amazing and unique and teach us so much…
But maybe he’ll stay quiet and watch to see what his classmates think.. Before he feels comfortable to say anything… letting his peers in that moment dictate what he is going to think about himself.
Because there is that human instinct when we are scared that gives us the three choices we know so well with autism… fight… flight… or freeze.
My Jack… he isn’t a fighter… he’s like his mom… he’s a people pleaser… someone who finds worth in being needed and wanted and approved of.
His go to, when he doesn't know what to do is to freeze.
He can be brilliant, and funny, and charming, and just melt your heart with the most authentic notions of a dreamer…
But he can forget his worth when he isn’t performing… and his assumption when met with shame or disappointment is that he is unworthy.
It’s just part of his wiring.
So when he comes home today, I’ll make sure there is space for him to talk about it, and to reinforce the scripts he needs to hear of his worthiness in all of his amazing magic… using real situations he can ground himself in to remind himself in the moments he feels less than.
And hope to the heavens that class clown made everyone smile today, and learn through his story, with an open mind and open heart… because he is adored by his classmates… and if I’ve learned anything in this lifetime it’s that story sharing can be what changes hearts and minds and rewrite what it is we all know to be true.
As you talk to your kids this month about Autism, as it is the month of Autism Acceptance… I hope our journey and story help you in some way…
I know it’s been a while since I’ve shared… as a few pieces I wrote made me second guess myself a bit… but where there have been so many who have reached out throughout the years, I know it’s important to keep sharing…
So if you are reading and this helps in some way… know I see you. And here to return the favor anytime you need the confessional.
Thanks for being here. xo