Today is World Autism Awareness Day.
While the world at large is made “aware” of autism today, here in our house, we are aware of autism every moment of every day. Autism is pervasive, in that it affects multiple systems of the body, but also in that it affects every part of our lives.
My son was one of the most social, easygoing babies I have ever met. He hit all of his milestones on time, even early, in some cases.
I have spent my entire life hearing that I was a brilliant little kid (imagine peaking at age four), and people who knew me back in my glory days often remarked upon how he took after his mama.
At seventeen months, he began to point out and identify letters and numbers. If you’ve spent a lot of time around small children, as I had, being a daycare provider, you know that this is peculiar. I was teaching Pre K at the time and I had plenty of completely typical kids who still struggled with letter and number recognition.
By some coincidence, while this was happening, a facebook friend of mine posted about her son’s hyperlexia and its relation to his autism diagnosis. Somewhat nervously, I mentioned this to a coworker at the daycare center and she laughed. “Jamey? No way. He’s just really smart.” Mollified, I let the idea go.
Right around that same time, Jamey began biting other kids at daycare. Having worked in the industry for a decade, I had seen my fair share of serial biters, but it is a different animal entirely when it’s your usually sweet, loving baby who is inflicting bodily harm on unsuspecting kids. Nothing worked to curb it. There was no method to his madness, no way to predict when he was about to attack. I can’t remember ever feeling that helpless in my entire life. Eventually, my director suggested I contact early intervention. There was some buck-passing regarding who could work with him, as I lived and worked in two different areas of coverage and, before it was sorted out, the biting had let up. When I gave birth to my daughter a couple months later, I left the daycare center to stay home with the kids.
By the time Early Intervention came out to evaluate Jamey, he had just turned two. During the initial visit, the specialist asked if I had any concerns about autism. I mentioned the early letter recognition, but said I wasn’t terribly concerned. She said, rather convincingly, that she wasn’t either.
At some point in the next year, however, it became glaringly obvious that we had been mistaken. He began to exhibit behaviors that are frequently attributed to autism, the “red flags” that I had learned to keep an eye out for while working in the early childhood field. He stopped playing with toys, preferring to line them up, or hold them up in his peripherals to examine them closely. He became prone to meltdowns, flapping his hands, and dropping to the floor. He began to fixate so intensely on what he was doing/thinking, that it was essentially impossible to get him to focus on anything else. He stopped communicating, and began speaking only in lines from Sesame Street episodes. By the time he hit his third birthday, there was nary a doubt left in my mind that he was on the spectrum, though it would be nearly a year before we would get in to see a developmental pediatrician, who would confirm it.
There’s a cliche in the autism community “If you’ve met one person with autism, you’ve met one person with autism.” It’s meant to convey what seems as though it should be the apparent fact that people on the spectrum are not a monolith. Like any other population, they are individuals with their own set of skills and challenges. While there are hallmarks that most autistic people have in common, autism means something different to everyone affected by it.
In our house, autism means a constant, epic war between routine and chaos.
It means that we never know what time we’ll finally be able to go to bed. It means striking a balance between giving in and standing our ground. It means that we can’t always get out and do the things we want, because our lives and plans revolve considerably around what kind of day Jamey is having. It means that there is constant noise. It means repeating ourselves a million times and sometimes still not getting the intended result. It means feeling like we are constantly on the defensive, because the general population doesn’t understand people like Jamey. It means enduring unsolicited advice from every armchair expert on the planet. It means digging deep and finding patience when we feel like we’re at the end of our respective ropes. It means worrying endlessly about what the future holds for him and crying at the thought of what would happen to him if we died. It means that there are days where the autism wins.
It also means snuggles, and lots of them. It means watching the shocked, impressed looks on people’s faces when they hear someone as small as Jamey spelling words at the grocery store, or doing subtraction at the playground. It means being immensely proud of things that most parents take for granted, like mastering a basic self-help skill, or greeting someone without being prompted.
It means laughing to the point of tears over something dreadfully simple because his laughter is so infectious that I can’t help but join in. It means accepting that my four year old’s knowledge of certain subjects is already more vast than my own. It means feeling like my heart may explode from how fiercely I love this little human who keeps me up all night and throws his dinner on the floor. It means that I would not change a moment of this crazy life or a single hair on this little boy’s head.