Seven years ago, I couldn’t help but ask myself, “Why?”
Why my son? Why my perfect, sweet, wonderful Max? Had I done something wrong? If so, why was it being carried out against my innocent 2-year-old son?
Seven years ago, my wife, our son Max and I were sitting with a team of doctors, behavioral therapists and specialists at Dayton Children’s Medical Center. They spent several hours observing Max and his interactions with everything in the room, diligently taking notes.
When they were finished, they started talking to us, using all sorts of terms that seemed to be leading up to something, but never actually got to the point. Having never been one to mince words, I looked at them and simply asked, “Are you saying he’s autistic?”
One of them looked directly at me and said three words that will forever be seared into my heart, mind and soul.
“Yes. He’s autistic.”
I don’t remember much about what happened the rest of that day. I know tears began flowing down our faces. I remember them giving us information — but not much of it registering with me. It was almost as if they were speaking to me at the bottom of a swimming pool. All I heard was muffled sounds.
They would perform some more tests on Max before sending us on our way. We walked out onto the sidewalk holding Max’s tiny hands, unsure of what our future — or, most important, his future — would be. We had no way of knowing what his life would be like — if he would learn to speak, if he would be able to go to a mainstream school or if he would ever be able to live independently when he was older.
We now have the answers to some of those questions — but every day brings new uncertainties and unknowns. I guess, of everything, that’s the hardest about being the parent of a child with autism — particularly in the moments immediately after a diagnosis has been given — is the fear of the unknown.
I remember us stopping for lunch at a restaurant on the way home, but Michelle and I picked at our food. We didn’t much feel like eating. Max munched away happily on his food, however, his face beaming as if he didn’t have a single care in the world.
While we were sitting at lunch, I texted my family members who knew of the appointment and simply told them, “Max has autism. Please don’t call. We aren’t ready to talk about it right now.”
I knew my parents and siblings would have nothing but the best intentions and empathy, but at that point, I wasn’t ready to listen. In that moment, in that restaurant, it felt like it was us three against the world — a world that had thrown an affliction at my wonderful baby boy.
It would take a few days for Michelle and I to recover from the news, but once we did, we knew what we had to do.
We had to fight.
We had to fight against misunderstanding. We had to fight against prejudice. We had to fight against bigotry. We had to fight for our son.
And, because there is no known cure for autism, we fought the only way we knew how — by educating ourselves. We devoured every scrap of information about autism and its treatments online and in print. We talked to other parents fighting the same battle. We talked to every expert who would give us five minutes of his or her time.
We’ve been making ourselves aware of autism for the past seven years — and I’m overjoyed to report Max has made tremendous strides in that time — but we’ve only begun to scratch the surface of what we know or will learn in the coming years.
And we are not alone. Considering autism affects 1 in 68 children (according to the latest numbers released by the Center for Disease Control — it is something of which we all need to be aware. Chances are you know someone who either has autism or has a loved one fighting autism.
World Autism Awareness is Sunday. I would encourage everyone out there to take a few moments to learn a little bit about autism, what it means and how to help those who have it.
Since that day we found out Max has autism, I don’t find myself asking “why?” very much anymore. Because I know why. We can help him. We can be his voice. We can make people aware.
We can fight, that’s why.
Reach David Fong at email@example.com; follow him on Twitter @thefong