This is what autism looks like in our house: A few weeks ago, we ordered a new lunchbox for my son, Will, for the start of his new EEE preschool program. I found a lunchbox with a solar system design on it, and I knew Will would be thrilled. He’s been obsessed with the planets over the past couple months, and knows their names and order in distance from the sun, which planets are gas giants, their colors and other physical characteristics, the names of many of their moons, etc. But when Will first examined the lunchbox, a problem was immediately apparent.
“Where’s Jupiter?” he asked. I looked at the image on the front of the lunchbox and, yes, Jupiter with its Great Red Spot was in its proper place in the solar system. But then I looked at the side of the lunchbox, where the names of the planets and the sun were printed. They were all there…except Jupiter. I could see Will’s distress growing by the second. The lunchbox was wrong. He knew the planets, he loved the planets, he could recognize their images and read their names, and the solar system on this lunchbox was not the way it was supposed to be.
I have become an expert at creative problem solving, but I had to act quickly. I grabbed a marker. “Here,” I said. “You fix it. Write Jupiter’s name on your lunchbox where it belongs.” And he did. Then Will spent the next hour drawing remarkably detailed pictures of the solar system, over and over, accurate in every way, except for Jupiter, which he omitted from every drawing. And the storm passed.
A lot of parents say that they knew early on that something was different about their child, long before the autism diagnosis. They noticed problems and talked to their pediatricians; they knew something wasn’t right with their child’s development. Not me. I didn’t have a clue. I was totally blindsided by my son Will’s autism diagnosis. And yet now that I know how and why he’s different, it makes perfect sense.
After all, Will’s development was typical in just about every way. He spoke his first words at 10 months, had a vocabulary of over 50 words by 18 months, and talked pretty much nonstop. No language delays there. In fact, he had no physical delays of any kind, he was interested in other people and super attached to me, and he was very smart. Other than a few colicky months as a newborn, and his inability to sleep through the night for his first two years, we had absolutely no concerns about Will. He was a fun, sweet, happy boy. How could a child who was reading and writing words before his fourth birthday have developmental problems? My husband and I never suspected a thing.
Once Will began preschool this past fall when he was 4 ½, it became quickly apparent that he was having trouble in that setting, particularly in his interactions with other children. A special educator observed him in the classroom and told us that Will’s social behavior was “atypical” for children his age, and recommended that we have him evaluated by the Child Development Clinic. Will was diagnosed with an autism spectrum disorder this February, days before his 5th birthday.
Once we received Will’s diagnosis, I realized that autism is the key to understanding not only his challenges, but also many of his strengths and delightful quirks. Most of young children develop social skills intuitively by watching others. Will is going to need to be explicitly taught these skills; this is why he didn’t understand how to behave toward the other kids at preschool. Some social situations and settings seem to make him anxious, so he fixates on people and special interests to feel more secure. Will does not have any speech delays, but he does have communication problems. While he could talk all day about the solar system, he struggles with two-way conversations. He takes language literally: Once he couldn’t stop laughing at a line in a story about a girl who was “glued to her seat;” Will was obviously picturing a child literally stuck in her chair with Elmer’s glue and the image cracked him up.
Autism is not just a disability for Will, but it’s also the source of some of his amazing gifts. Autism has given Will the tendency to fixate on special interests and an ability for intense focus on those areas. Over the past couple years, Will has obsessed over the alphabet, pumpkins, flags, trains, penguins, chess, guitars, power lines, numbers, planets, and various tv characters. Yes, I do see now that a fixation with power lines is a little unusual for a preschooler, but Will’s fascination with academic areas like math, reading, and writing spurred him to acquire a lot of skills in a very short period of time. He knows as much as he does about the planets because he will study them at length and is passionate about learning.
Many autistic people are also visual thinkers, and Will demonstrates an amazing artistic ability and perspective. He doesn’t yet have the fine motor skills to turn on that tricky faucet at preschool, but he is able to draw three-dimensional objects and intricately detailed pictures. Will is also starting to work through some of his fears and negative emotions by creating art. But Will is a perfectionist about drawing and creating, and he’ll sometimes crumple up pictures that fall short of the images he sees in his mind.
For Will, autism is a difference, not a disability or a disorder. If he didn’t have autism, he wouldn’t have the same spark and creativity that make him an amazing kid. Like all of us, there are things Will is very good at and other areas where he struggles. He has a long road ahead to learn how to better understand and navigate a social world that is like a foreign culture to him. My goal is not to change him into someone he’s not, but to help him learn and grow enough that the challenges he has from autism don’t prevent him from realizing the talents and unique perspective that autism has also given him.
[typography font=”Delius Swash Caps” size=”24″ size_format=”px”]Written by Kim[/typography]
Kim is a mostly-stay-at-home mom who lives in Burlington with husband Jon, daughter Molly (8), and son Will (5). She enjoys reading, hiking, bread baking, and gardening, and she dreams of building her own urban homestead someday, when the kids are just a little more independent.
Hi! I’m autistic! So here’s an autistic perspective on autism, even though I know that’s not what anyone wants to hear. 😉 When I saw this post I was like, oh no, an autism mom, here we go. And after reading your post I’m like yeah, yup, it was just like that. But how to explain it to you?? Can I somehow show you how it sounds?? I guess I can try.
Autism isn’t a condition. Non-autism is a condition. It’s a condition combined with a collective social hysteria that amplifies it. If perception including social perception is a mixing board, non-autism is having most things at the standard position as defined by society. For people in this condition, sensations become bothersome or noticeable at the same time, and so if a group of such people is feeling exceptionally lazy they can instead of working out any agreements about what sensations to have just do something “normal” and assume that everyone will feel “fine” because it’s within their acceptable ranges. This doesn’t actually work very well both because it excludes lots of people at the edges and also because it doesn’t give an optimally rich experience even to the included people because it’s so generic, but it makes moderately pleasant experiences slightly easier to produce or at least to commodify.
Autism on the other hand isn’t a particular condition. You’re the one with a particular socially defined condition, normality, which is more or less the same for everyone who has it. Autism isn’t like that. Autism is having the knobs on the mixing board turned ANY OTHER WAY than that one way. Various things could be louder or softer. Non-autistic people are boring and predictable and all exactly the same, and strangely proud of it. 😉 Autistic people are all autistic differently. You’ve said almost nothing in this essay about your child’s autism, which I doubt you’re very aware of at all, as my own parents were not much at all aware of how things felt to me.
It’s not that autism is a particular way of being that makes you have special interests. Everyone has interests but if your perceptions are normalized then your interests will seem normal. If things seem different to you then that changes what you’ll take an interest in, it’s as simple as that, and so autistic people are known for having special interests, that is for not having normal interests, for choosing different things to care about because of how things feel different.
Things that feel OK to other people might not feel OK. And nobody ever asks. The hard part I guess is that caring about autistic people’s needs or caring about human difference in general requires breaking out of this trance of just doing what’s done because it’s what’s done. It’s a different pace to life and attitude towards social relations to actually ask first before making someone experience something.
[…] My son was diagnosed with autism. […]
Thanks so much for sharing your story Kim!
Kim, I’m so glad you shared his story. I feel like I understand the spectrum of autism so much better now after reading about your journey.