April 6

What autism looks like

In light of April being autism awareness month, I decided to switch things up a bit and write a post on what autism looks like to our family, from a photojournalistic point of view (disclaimer: this post contains a mixture of photos from my big camera and phone—whatever happened to be more convenient at the time). Initially, I had intended to do a post that was primarily photos, with the idea that photos of huge lines of cars would mean more than simply writing "C likes to line up his cars". However, as the post started to take shape, I found that his story needed to be told in both pictures and words, especially since no one would have any clue why I was posting photos of my cereal boxes (more on that later). So over the past several months I have been documenting the little moments that are “normal” in our house: the funny quirks, maddening obsessions, and moments so tender we’re reduced to tears. There are lots of tears at our house, every day. Happy tears, sad tears, frustrated tears, angry tears. With autistic kids and the ones who love them, emotions run big and strong all the time.

I think it’s ironic that everyone agrees that all kids are unique, yet many people still lump autistic children together in their minds simply because they have the same disorder. The range of the autism spectrum is staggering. However, on multiple occasions I have had interactions with well-meaning people who tell me about the autistic child they know who is currently “doing great and holding down a steady job bagging groceries”, in an attempt to encourage me about C’s future prospects. In the meantime, C is doing multiplication and discussing the components of amino acids at the ripe, old age of four.

With autism, there is no “normal”. And while this is what our normal looks like, I’m certain it is drastically different than other families dealing with spectrum-related disorders. So with that, welcome to our home:

First of all, C loves numbers. Even the word “loves” is a gross understatement. They are an all-consuming obsession, one that has infiltrated almost every sector of our lives. For example, he loves clocks because clocks have numbers.

He loves staring at clocks, asking what time it is, telling you what time it is, and a normal “conversation” to him would be to discuss whether its “AM or PM” in various states across the country (oh yeah, he has known all 50 states since he was two. It is also typical for him to describe his broken tortilla chip as looking like Illinois or a logo on a shirt bearing resemblance to Ohio. But I’m getting sidetracked.). He can also read analog clocks better than my husband most of the time.

If you have a keen eye, you’ll notice that C is wearing the same clothes in many of these shots even though they were all taken on different days. If given the choice, he will only wear clothing with numbers on it, and his favorite shirt is a Little Kickers t-shirt that he got for participating in a soccer program when he was 18 months old. As his personal stylist, it kills me that he has a whole closet full of awesome clothes that only get worn when I’m willing to pick that fight, but most days it’s just one of the many things I’ve had to let go of for the sake of sanity.

The obsession with numbers even extends to our breakfast cereals. He identifies various cereals not by their names, but by the number of grams of whole grains per serving each one contains.

He is also extremely literal, and life to C is very black and white. He loves cribbage boards (because they have numbers on them), and it was the cribbage board that taught him to count by fives. After counting to 120 by fives several times, I asked him to keep going. Specifically, I asked him “Well, what comes after 120?” To which he answered “121”. Duh, mom.

C is one of the smartest people I know, but the autism is most apparent in his social skills (or lack thereof). Every time we go out, C loves to talk with the strangers we encounter. He wants to say hello to everyone, but lacks the social tools to sustain a conversation beyond “Hi!” His current obsession is with first, middle, and last names, and he will ask a person what their first, middle, and last names are no fewer than five times in a conversation (even if the person is a good friend, our next door neighbor, or an immediate family member). I apologize if this has happened to you.

He is very curious about the world. He especially loves mechanical things that move, like wheels, hinges, and gears. We often have to stop in the middle of bike rides because C finds that playing with the gears is more fun than riding the bike itself.

His idea of a dream date would be to spend the afternoon in Home Depot, because there are plenty of hinged items to open and close (Washers, dryers, refrigerators, cabinets, and toilet seats. Who knew there were so many options when it came to toilet seats?!).

He is also obsessed with instructions. Not my verbal instructions for how to be a functional member of society, unfortunately, but instruction booklets. LEGOS must be built strictly according to the instructions (I’ve been told “No Mommy! Don't do step 5 yet, we are on step 4!” countless times). He also loves getting out board games and setting them up according to the instructions, but he’s never interested in actually playing any of the games.

There are several other humorous things C entertains us with, but I do want to acknowledge the fact that dealing with an autistic child is not easy, and most days it feels like playing Russian roulette. Each interaction, no matter how small or seemingly insignificant, can unexpectedly lead to a mind-blowing, body-flailing, scream-so-hard-you-throw-up reaction. I’ve had blood and snot smeared into my carpet and across my walls because I asked him to wash his hands, or had him throw himself down the stairs in protest over going potty downstairs when he wanted to pee upstairs. We’re slowly learning some of his triggers, and the best strategies to prevent outbursts, but it’s a difficult road at best. The hardest part is finding the right balance between being firm in discipline and setting boundaries, yet giving him the extra comfort he needs but doesn’t necessarily want in his moments of insanity (especially when all you want to do is scream and threaten to disown him). I do believe that there is a large sensory processing disorder component at play in most of the outbursts, and I frequently need to remind myself that autistic kids’ brains are wired differently, and sometimes that wiring can cause them to lose control of their bodies. It’s hard though, especially in the midst of an epic breakdown.

These big emotions swing the other way too. He loves his sister like nothing I’ve ever seen. It’s a big, unconditional, rough love that usually ends in a gross invasion of personal space or him “riding her like a horse” (his words, not mine), but she loves it and it's good preparation if she wants to play rugby when she’s older. But he is so, so sweet to her, always wants to give her kisses, and gets upset when she has to nap because he wants to play with her. He gives her band-aids and “pink soap” (antiseptic wash) whenever I tell him that a certain food might hurt her belly. He sings to her and tells her “Its ok Brooklyn, you don’t have to cry” when she’s upset. They have the relationship I wanted them to have so badly before she was born, but was afraid to hope for after his diagnosis.

I could go on and on about C’s various quirks, but I’ll end with this last one. Another obsession is lining things up in long, perfect, straight lines. Sometimes I’ll come into the house to find all the shoes paired up and arranged in a perfect line down the entryway. Most of the time its long rows of cars lined up, sometimes 30-50 cars deep. What is most perplexing about it is that these long, extremely ordered lines are often found in the midst of gigantic messes, since he has no qualms about destroying rooms while playing in them. This is how I imagine it must feel like to be C: trying his best to make order in the midst of chaos and no one seems to understand.

It is too easy to put on a happy face for social media, and I am all too guilty of only posting the perfect photos of my kids without mentioning how difficult it was to simply dress my child in the outfit he's wearing. Autism is hard. However, even though it is a label (and quite a negative one at that), the diagnosis is also a powerful vehicle we can use to get him the early intervention therapy he needs, and the information I need to help him. But it is also important to remember that labels are only labels, and no label could ever fully describe the smart, sweet, awesomeness that is C. It is so easy to focus on the quirks or the struggles or the craziness, but none of these quite captures the whole picture.

He never ceases to amaze me.