This morning started much like any other, with Maxie and I enjoying some quiet time snuggled on the den sofa before his three siblings and his Daddy woke up. As like most mornings, Max started chatting about whatever topic was on his mind. Sometimes it's about his favourite TV shows, sometimes it's about how many days there are until Thanksgiving/Halloween/Hanukkah/Christmas, but most often lately, it's about our galaxy and which planets are made of rock versus gas. Today, however, the topic just so happened to be autism.
"Yesterday on the autism walk there were so many people," Max said [Note: for Maxwell, "yesterday" means "in the past"--in this case, he was speaking about a walk we took with an autism organization over a year ago].
"You're right," I said.
"And we all had t-shirts and Papa and Yaya were there and Sam was there and we had the stroller and it was at Waterloo Park and we got that doll for free and there were games and there was food, too!"
"Yep." I yawned, as this conversation was happening pre-coffee.
"And it was to get money for people with autism!" Suddenly Max paused. "What is autism?"
"Um..." I took a moment to think. "Well, autism is one way that people's brains can work," I said, choosing my words carefully. "Autistic people often think differently with their brains than people who are not autistic. Some autistic people have great memories, or are really good at figuring stuff out! A lot of autistic people are better at being honest than people who are not autistic because they know for sure that lying is wrong. Some people with autism have super hearing and don't like too much noise. Some autistic people find it really hard to speak with their mouths, so they try and find other ways to talk." I paused. "Your cousin J. is autistic, remember?"
Max snuggled against me. "It's like Special Me!"
"Like Special Me Camp! That was for autism!"
I thought for a second, not sure what he was talking about. "Oh, you mean the summer camp you went to where you learned stuff to help you when you feel busy?" I asked, referring to a day camp he attended run by an Occupational Therapist and Speech Pathologist, that focused on self-regulation and social skills. "You're right, there were kids at the camp with autism. Also other kids who are special in other ways, too. That was a fun camp!"
"Yeah! Special Me!" Max said. "J. has autism and Special Me is for autism and do I have autism?"
There it was.
I have to admit the question caught me off-guard. It's not that I thought it would never be asked. It was more I'd assumed that, being only five, Max wouldn't ask it for a few more years. Clearly having underestimated my son, I'd assumed that for now it was enough that we spoke about autism freely in our household and that we attended various activities with the local autism community.
It's not that my husband and I believed Maxwell would truly know in some osmosis-type way that he was autistic, it's more we figured we'd just keep following his lead. When he was ready, he'd ask. Until then, we'd keep speaking openly about differences and diversity.
For a year now, for example, Max and I have been able to talk at least a bit about what it's like to have "big feelings" (the term he gives to meltdowns). According to my very bright five-year-old, big feelings can be pretty darn scary, upsetting things to have! We've talked about his "super hearing" and how he likes wearing the big headphones at school assemblies in order to feel comfortable with the loud noises. We've talked about how awesome he is at puzzles (much better than his mother!) and how he has the best memory in the family [Note: if Max tells you an event happened, even a year ago, then trust me, it did].
We've also talked as a family about what makes each of his siblings special, so as to emphasize that we all have our own differences. And someday, when he's the age his siblings were when I told them, I intend on sharing with my son that his mother has a unique difference, too (a mood disorder), a difference that can make some days seem insurmountable, yes, but that also comes with its own strengths. In other words, in my mind I've always imagined that some day I would talk to a much-older Max about how his mother gets "big feelings", too.
But what about the present and telling Max that he is autistic? When is the time right to do that? As his mother, I've just kept following his lead, waiting for the day that my child would in some way express an interest in knowing.
It turned out that today was the day.
Being asked such an identity-related, personal question by your child is a privilege and one to not take lightly. Even as it was asked, I knew I'd have no control over what Max did with my answer.
I also knew that once my answer was given, I would be handing him something new to hold, something that he'd be aware of for the rest of his life. As a non-autistic adult speaking to a small autistic child, I wanted to make sure that I gave him an answer that was equal parts honest, simple, positive, and validating.
Given that I don't view autism as something "good" or "bad" but more as something that just "is", I wanted to make sure I was very aware with how I presented my answer to my son. It is my belief that how you present things to someone who trusts you so implicitly can make all the difference in the world. This was not the time for carelessness.
"Yes, Maxie, you are autistic," I said. "Just like your cousin J. and just like a lot of other great people! Do you know what being autistic means for you?"
"No." He snuggled closer.
"It means that you have an amazing memory and have super-hearing and that you are incredibly loving and that you feel things really, really strongly. Sometimes that feeling part can be hard, like when you have big feelings. It also means that you can notice stuff that me and Daddy don't even notice. Being autistic means a lot of special things. It's part of who you are, Maxie, like you having brown eyes and me having blue eyes."
And then I waited, knowing that this discussion was not a race to hurry through, but rather just the beginning of a lifelong conversation that Max would have with me, with his father, with the world, and ultimately, with himself.
Max put his arms tightly around my neck. I waited again. Was he going to "bonk" me (a sign of dysregulation or that I'd somehow screwed up?). Was he going to start talking about something entirely different?
My five-year-old then placed his mouth close to my ear. "Let's go wake up Daddy!" he crowed. "I want to tell him I have Autism right now! I'm a Special Me! I'm a Special Me!"
And so, folks, that's exactly what we did, making sure to take the stairs together as we so often do, hand in hand.