The following is written by one of our former teachers, Joshua Holland. His young son is on the autism spectrum which helps Joshua understand the strengths and challenges of life on the colorful spectrum! With his permission, we are publishing this well-written, descriptive post.
Hello world, meet Elliot. I hope you’re ready for him.
I’m the proud papa of three boybarians. Elliot’s my youngest son, who just turned seven in January. He has two older brothers who are neurotypical. He was diagnosed with Autism Spectrum Disorder (ASD) just after his third birthday.
Autism truly is a spectrum disorder: the sorts of challenges presented vary widely in manner and severity. My son’s experience may be different than for other people on the spectrum.
My wife and I knew something was different with Elliot when he was about 18 months old. His vocabulary stopped growing around that time, and over the next few months he lost most of his ability to communicate.
Today, Elliot is minimally-verbal. Communication is by far his biggest struggle. With work, he has made great strides in language skills. Thankfully, love needs no words.
Imagine being able to understand almost everything you hear, but being unable to communicate back. You try to express what you want, but you don’t know the words to speak, and the people who care for you can’t guess. They may not know you’re asking for anything at all. It’s difficult for me to fathom just how frustrating that must be for him.
And yet there’s Elliot, looking for a way to get his message across time and again. When he lacks the words, he takes my wife or myself by the hand, leads us to what he wants, and “tosses” our hands toward it.
Elliot sometimes has difficulty making eye contact. He struggles with social interactions and his reactions are occasionally inappropriate. Recently he threw an apple at a classmate who was crying. He can be in the same room as the rest of my family, and yet so very distant from everything happening around him.
He’s very sensitive to sound. This can manifest in really awesome ways. He has perfect pitch and a beautiful, pure singing voice. He loves music, particularly piano. Elliot will sometimes arrange his toy cars or colored pencils as if they’re piano keys, then press them and sing the proper note. He’s also fantastic at imitating sounds. Going on a car ride with him is sort of like having a little Michael Winslow (“Jones” from the Police Academy movies) in the back seat.
This sensitivity also presents its share of challenges, though. Picture this: you’re in a restaurant having lunch with a friend. What do you hear? Probably the conversation of your friend, but that’s because you choose to listen. Think about those moments when there’s a lull in the conversation. What else do you hear? Chatter from nearby tables. Mood-setting music piped in over the speaker system. The hum of fluorescent light bulbs. The squeak of a server’s shoe on the floor. The clattering of plates from somewhere in the kitchen. Traffic passing by on the street outside.
Now imagine perceiving all of those sounds at the same volume as your friend’s voice, without the ability to block any of them out. How hard would it be to hold a conversation? There is evidence that many people on the spectrum have an issue processing sound in this way. It certainly seems to be the case with my son. It’s hard to get his attention in public spaces.
A typical day for our family begins at 6:00. I wake up and get my two older boys ready for school. Before I leave to drop them off, I wake up my wife. Elliot wakes up just after 7:00 and gets ready for school. My wife walks him to the bus and helps the driver buckle Elliot’s seat belt.
A paraeducator meets him at his school and walks him to his classroom. His teacher, along with three other paras, tailors their lesson plans to the special needs of their students. Routine and structure are helpful, but thankfully Elliot’s usually laid-back and willing to go with the flow. He loves schoolwork and learning, and seems to enjoy academic challenges. He responds well to excited verbal rewards like “great job, Elliot!”
Elliot has allergies to gluten and to dairy, so we pack him a lunch every day. His tastes are mercurial: yesterday’s food obsession is today’s grossest thing ever. We can generally count on him eating his fruit, with apples being a consistent favorite. Everything else is a toss-up.
Every day he and a para spend half an hour in a typical classroom setting for reading. Afterward he joins that class outside for recess. Elliot is a flight risk. While he usually plays and has fun, he has been known to try to run away toward the street. Thankfully his para keeps a close eye on him, and is faster than him.
He wraps up the day in the special needs classroom, then gets back on the bus. When he gets home he has a snack, and then prepares for one of his therapists to arrive. My wife and I privately employ therapists who work with Elliot using ABA, or Applied Behavior Analysis. Depending on their availability, Elliot receives two hours of ABA therapy, three times a week. With the help of this form of learning, Elliot has made great progress. He also has speech therapy once a week, and used to have occupational therapy once a week to help him with fine motor skills. In the past he’s also participated in a weekly adaptive swimming course.
After therapy it’s supper time. We try to hang out as a family as much as we can between supper and bedtime. He’ll play outside on the swing set with his brothers, or perhaps he’ll repeatedly watch the same YouTube video on his iPad. Elliot tends to choose a parent to be his “buddy”. When he chooses Daddy he usually wants to wrestle, and he asks to be tickled. If he chooses Mommy, it’s as if I don’t even exist to him.
At 8:30 we help him brush his teeth, and we help him put on his pajamas and his Pull-up. Elliot wasn’t fully potty-trained until age six. He’s still prone to the occasional accident, and he doesn’t always stay dry through the night.
Bedtime is a negotiation. Some nights I can tuck him in and he goes to bed without a fuss. Other nights we give him space to play on his own a bit longer until he climbs into bed on his own. Now and then he wakes up in the middle of the night, turns on his light, and starts playing. Most times he’s just loud enough to wake us up, and we put him back to bed. A few times his play has turned destructive. He’s managed to flood his bathroom twice, kick a hole in a closet door, and smash through some of the drywall in his room. We’ve added alarms to his bedroom windows because he climbed out of one at age five. We caught him before he made it to the street.
They’re not usually that scary, but each day is always interesting. They may never be “normal”, but they are routine. We adjust to Elliot’s needs and we get on with our day. There are plenty of chuckles and tears along the way.
I’ve heard it said that being a parent can make you feel things more deeply than you ever have before. And as I’ve raised my first two sons I thought I understood that sentiment. Elliot re-defined those emotional depths for me.
It’s easy to be angry. There’s nothing fair about his diagnosis. My son may never get to drive a car, or go on a date, or discuss politics, or do any of a thousand things that many of us take for granted. My wife and I may always need to be there to care for him. My other boys must constantly make concessions for Elliot, and help us keep him out of trouble.
As a parent I have to think inside of day-tight compartments, because planning for Elliot’s future is terrifying. I worry about how he’s treated when I’m not around. I fear that ignorant people will tease him, bully him, perhaps become physically violent with him. His deficiencies in speech do not equate to an inability to hear, or to understand, or to be hurt by careless words. I wonder if he’ll be able to control his impulses and avoid danger.
My saving grace is that the future is a moving target. I take comfort in looking at how far he’s come. Thanks to some fantastic people and a lot of hard work on his part, Elliot is making great strides. It gives me hope to see his progress, and it reminds me that his journey just isn’t going to have a predictable itinerary.
One of my favorite breakthroughs happened a few days ago when he woke up from a short nap. He looked me in the eyes, gave me this beaming grin, and threw his arms around my neck in a huge koala bear hug. As I scooped him up, he leaned back and said “Make supper. I want bacon.” First of all, that’s my kind of meal plan! But more importantly it’s the first time he’s ever strung together two sentences. I can’t adequately describe the joy I felt in that moment. And you can bet that little boy had some bacon for supper!
So world, I suppose what I would tell you about Elliot is that he isn’t broken. He is amazing. He’s clever, and affectionate, and snuggly, and playful. He loves Star Wars and will sing the same song ten times in a row. He’s impulsive and persistent, quick to learn and reluctant to demonstrate, unpredictable and brave, frustrating and sensitive. He is a little boy and he is autistic.
If you only see my son’s symptoms, then you really don’t know him. If you try to look past his diagnosis, then you’re missing a large portion of who he is. There’s nothing “wrong” with Elliot. He simply is.
April is National Autism Awareness Month. You may be familiar with some of the statistics. Today more than 3.5 million Americans live with autism, and its prevalence in this country is estimated at 1 in 68 births. As a comparison, more children are diagnosed with autism each year than with juvenile diabetes, AIDS or cancer, combined. According to the CDC, about 1% of the world population is on the spectrum.
To be aware of autism is important. But why stop there? We can choose to be compassionate. We can be understanding and patient when a child on the spectrum melts down in public, or we can choose to be scornful and judgmental. We can perpetuate ignorance, or we can teach our children that the world is made up of many different kinds of people.
It’s important to look beyond the numbers and see the people whose lives are impacted every day. It’s caregivers, therapists, teachers and family. It’s those who face the daily challenges of life on the spectrum. It’s so many sons and daughters. And it’s my little boy.
I hope you’re ready for him.