I read a lot about Autism. An awful lot. I have read countless stories from parents about their kids on the spectrum and what led them to an Autism diagnosis. How they always knew or suspected that something just wasn't right. A nagging feeling. An explanation for why their kid seemed so different from all of the others. Why they never slept. Never ate. Never seemed content. How they were on a quest to find answers and that they weren't really surprised when the answer came.
Our story is a little bit different. One that I haven't really come across much even though I know I'm not the only one. See, no one (including me first and foremost) thought B had Autism. No one. Not family. Not friends. Not even his own pediatrician who had cared for him since birth. Someone who referred kids for evaluations all the time and knew firsthand what Autism looked like at all different ages. Her exact words were "I'm not worried about Autism with this one". She even went so far as to send us to an ENT, who then immediately diagnosed fluid in his ears and scheduled surgery. They believed maybe his hearing was causing his one and only delay. Still at this point, I had absolutely NO clue. None whatsoever.
His Autism just didn't present itself in a typical way. There weren't any glaring signs. Easy, no- complication pregnancy and easy, quick delivery. Heck, we went home after less than 24 hours in the hospital. And then once we were home, he was an easy kid. Laid back. Ate like a champ. Slept (as well as any other newborn sleeps anyway). Smiled. Constantly smiled. Coo'd. He was so stinkin' adorable. Perfect. I didn't see it. Met all of his milestones on time. Rolled over. Sat up. Crawled. Walked. Grew. He was 100% healthy and thriving. So I never suspected. Not once. And I honestly don't think it was denial or a defense mechanism. He just didn't look like a kid with Autism. Not one that I'd ever seen or heard about anyway.
Take a look a couple of photos from that time - tell me he doesn't look like he is engaged, social and just a typical (albeit over-the-top adorable), kid? It sometimes pains me to look at these pictures. Before we knew. Before our lives were turned upside down. When we were a normal, busy family with our two perfect little boys.
And wow were we busy! Our boys are 15 months apart. We were flying by the seat of our pants - in survival mode just to meet their very intense, very different-staged needs. It was organized chaos.
So believe me when I tell you I was completely blind-sighted. I will never, ever forget the day the Autism word was first uttered.
He was meeting all of his milestones. Except one. And that one turned out to be everything. He wasn't talking. At 18 months and then almost 2, the language wasn't developing. He had words - here and there but no real progression. Just a late talker. Not uncommon. And it made sense - his brother never stopped talking. Why did he need to? Also it didn't seem fair to compare the two - of course they would be completely different kids and develop at different rates. I really, truly wasn't worried.
Just to be on the safe side, we were referred for an evaluation through the early intervention team at our local school district. A routine visit in our home. Where they interviewed me and observed B. I couldn't tell you one single thing they asked me or a single thing they did but I can tell you exactly how I first heard the word Autism in connection with my son. It went like this: a simple, loaded question - "What do you know about Autism?" ... and at that point, I think I went into some sort of self- preserving shock because I don't remember another word. It felt like the biggest punch in the gut I have ever experienced. Still does.
It only got tougher from there. One of the absolute hardest times we've ever had on this journey were those months when we didn't know. When we wondered. Analyzed each and every thing he did. Is that Autism? Or is that just being a 2 year old? He just did x,y,z - see? He's fine. Definitely not Autism. But wait - that does seem like one of the characteristics, so is he? Look at that other kid - he's doing the exact same things as mine. We're good. Unsure of how to move forward - not wanting to waste time if he needed help but not wanting to put a label on something that wasn't there. In Limbo.
Do yourself a favor - if you've never had to look at the list of autism traits and characteristics, DON'T. I promise you will see the signs and question so many people you know and probably parts of yourself. We ALL have them. Some of us have lots of them. And yes, B had several. In hindsight, maybe some of them should have been obvious. He didn't really point, didn't bring things to us and show "joint attention". I didn't know that term at the time but it's a huge piece of reciprocal communication and his wasn't typical. His eye contact was apparently more fleeting than I realized. And he was hard to teach. He would do something one day (like waive or say a certain word) and then we could never replicate it. There were signs. Just really subtle ones.
No one was on board with this news. I remember my parents' reaction - no, no. definitely not. And if, by some chance, they're right than he has the absolute mildest form I've ever seen. Personally, I was a mess. All I ever wanted to be was a mother and this constant internal struggle was robbing me of the joy I should have been experiencing. It was such a confusing, gut-wrenching time. Pure torture.
One of my very oldest and dearest friends happens to have a daughter who has Autism. I remember calling her and how she just listened as I went over all of my confusing signs and lack of signs. She, with the wisdom gleaned from a few years of living in the world I live in now, offered up some very simple yet very profound advice. Having never met my son, she didn't try to diagnose him for me. Instead, she told me that as he got older, it would become obvious and there would be no doubt. Either the gaps would close between him and his typical peers or they would widen. She was so right. Boy was she right. And let me tell you, they have WIDENED more than I could have ever imagined.
Yes. There is no doubt. His Autism is real. And it's anything but mild. And most of the time, that's okay. It's easier to move forward when you know a little bit about what you're facing. There is nothing worse than ambiguity.
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