Autism Awareness: W’s Story

Originally published here in April 2013.

 

This is what autism looks like in our house: A few weeks ago, we ordered a new lunchbox for my son, W, for the start of his new EEE preschool program. I found a lunchbox with a solar system design on it, and I knew W 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 W 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 W’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 W 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 W’s autism diagnosis. And yet now that I know how and why he’s different, it makes perfect sense.

After all, W’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 W. 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 W 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 W’s social behavior was “atypical” for children his age, and recommended that we have him evaluated by the Child Development Clinic. W was diagnosed with an autism spectrum disorder this February, days before his 5th birthday.

Once we received W’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. W 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. W 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;” W 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 W, but it’s also the source of some of his amazing gifts. Autism has given W the tendency to fixate on special interests and an ability for intense focus on those areas. Over the past couple years, W 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 W’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 W 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. W is also starting to work through some of his fears and negative emotions by creating art. But W 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 W, 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 W 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.

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This is Autism

Originally published as part of the This is Autism Flash Blog, November 18, 2013.

My son makes me see the world differently, and every single day I am thankful for his perspective.

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He draws like no five year old I’ve ever met. Three dimensional objects, landscapes with amazing perspective (“Mom, these streetlights are smaller because they are far away”), complicated contraptions with gears and pulleys and even elephants. He draws for hours most days and goes through stacks and stacks of paper (of course, he never colors on the back of the page). I wonder what he could draw if he had stronger fine motor skills; he is only now learning how to button his shirts.

This is autism.

He has an astounding visual memory. He has started identifying picture books by the style of the artist. “Mom, is this book by the author of the one where the man rode the bike all over the country?” Even when it’s been several months since we’ve read whatever book, he’s always been correct. One of his preschool special educators thought it was hilarious when he asked these questions about the social stories she wrote for him (“Is this by the same author as Using the Toilet?”). He remembers the visual appearance of power substations on roads we we rarely take. He spies every power line or cell phone tower we drive past; they are often his favorite memories of any trip. And now I see the power lines differently, too, because of him.

This is autism.

He has many struggles, but our life is not defined by his struggles. He needs help because he has amazing potential (like all autistic children!), not because he is lost. Our love leaves no room for despair or fear.

A Kindergartener’s Short Definition of “Autistic”

Originally published as part of the Autism Positivity Flash Blog 2014.

My six-year-old son, Will, had been very excited about his new Lego minifigure that he named Max. One day, when I picked him up from school, his aide told me that Will had been playing with Max and calling him “auto-tistic.” Even with his adorable mispronunciation, we could guess that Will was trying to say “autistic.”

I’ve talked to Will about autism, but I’ve never been sure how much he understands. He knows he is autistic and he has heard me mention other autistic people as well. But I had never heard him talk about anyone being autistic before. This was something new.

I asked him, “Buddy, what do you mean when you say ‘auto-tistic?’”

And Will replied, “Fantastic.”

Welcome to my blog

This blog is a place where one bored housewife can write about her amazing kids, a positive perspective on autism acceptance, and whatever else catches my fancy. To start with, please read my FAQ. I will also be adding a few things I’ve written and published elsewhere, and then move on to more original content. I hope you’ll keep reading!