Hidden In Plain Sight
- Christina Simpkins
- Sep 27, 2020
- 8 min read
You're at the grocery store and you hear what sounds like an "unruly" child. The child is yelling, kicking and shrieking. You walk by and the child looks like your average kid. You see the child throw himself on the floor and the parent is struggling to get the kid "under control."
Maybe you feel bad for the parent because you've been there. Maybe you watch or walk away with a judging eye thinking you'd never allow your child to act like that in public. Maybe this child does have behavioral issues. Maybe this child acts this way as a result of bad parenting. Or maybe this child can't control their behavior or doesn't understand they shouldn't act this way.
I'm not normally a judgmental person but I have to admit I've been the onlooker wondering why that parent couldn't get their child "under control." My husband, Jake, has also been that person.
We've all heard the word "autism" but how many of us know what it actually looks like? Until my most recent experience I had little knowledge of it. I've seen the movie "Rainman." I watched the show "Atypical" but I had no real world experience with an individual who has autism. Even those few examples don't illustrate what every case of autism looks like.
As we waited to receive Zayne's diagnosis, I educated myself on the symptoms of autism trying to find linkage between them and his behaviors. Once we received his diagnosis, I found myself wanting to learn more about the behaviors other children with autism displayed. This has been helping me to feel less alone and to have more understanding of which behaviors are linked to autism and which are not.
Following that logic, I thought about writing on this topic to help others understand what autism looks like in general and in this very specific case.
A little overview of Autism:
I’d like to preface by stating that I am not an expert in all things autism but I will share what I’ve learned in my research so far. The term Autism was first used in 1943 when a child psychiatrist, Leo Kanner, wrote a paper describing how 11 children insisted on routines, showed little interest in people, and displayed unusual body movements like flapping of their hands. Autism is a spectrum of varying behaviors with a wide range of severity. That is why it is called Autism Spectrum Disorder (ASD).
You will not find two autism cases that look alike. However, there will always be two common factors: difficulty in social communication and repetitive, restrictive behaviors.
Despite what "Rainman" taught us, not all individuals with autism are brilliant savants. Intellectual factors of autism range from delayed to above average just as they do in non-autistic individuals.
A recent study found that 25% of children with autism go undiagnosed. This is partially because autism isn't something you can physically see. Even a diagnosis takes multiple sessions with several tests and observers and there is no medical detection for ASD. It's one of those conditions that seem to be hidden in plain sight.
As of 2016, the CDC reports that 1 in 54 children have ASD. This data has increased substantially since 2002, where 1 in 150 children were diagnosed. It is 4 times more likely to impact boys (1 in 34 vs. 1 in 144 for girls). Parents who have one child with autism have a higher likelihood of having another child with ASD.
What causes autism? Despite the fact that the first cases were discovered nearly 80 years ago, this is still unknown. There have been links to certain genes and chromosome disorders, and environmental factors. Some have also voiced concerns that vaccinations may be a factor, though studies have been reported to disproved this.
Zayne and ASD
Just like other children with autism, Zayne has difficulties with social communication and has many repetitive, restrictive behaviors.
Social Communication
Most five year olds like to tell you stories, ask you inquisitive questions, answer simple questions easily and logically, and express their feelings. Zayne asks questions but they are the same questions and he wants a very specific response. They are not inquisitive questions, rather, they seem to only fulfill his need to be acknowledged in the way he wants to be acknowledged.
I can explain this in an example exchange I had with him earlier today. We had the windows open because it was a beautiful day. A wind gust blew one of the doors shut. Zayne asked "Who shut the door, Mommy?" I responded, "The Wind." He asked again, "Who shut the door, Mommy?" I responded differently this time, realizing he didn't understand what I was talking about. "Daddy shut the door." Then he repeated the same question. I gave another name. He yelled, upset that I didn't give him the response he was seeking. I give another name. Same response, his agitation growing. This exchange went on for 20 minutes. I tried to redirect him to something else but in true Zayne fashion, he focused back on the question again and again.
Zayne does not tell stories. He cannot give you a sequence of events. He doesn't seem to understand time or sequence. If you ask him what he ate for lunch, he will say nothing. If you ask him how his day was, he will say nothing. Sometimes he says it nicely, other times he yells.
Zayne also does not express his feeling or understand the feelings of others. He will ask "Mommy, are you mad at me?" at random times, seemingly not understanding what it means. He is never sad or at least he never acts that way. He cries when he is hurt or mad but he cannot tell you what is going on.
When he has a scratch or a bruise, he cannot tell you what happened. He will say "I did that."
He says hi to strangers in the same excited voice and you will usually hear it more than once, almost as if he forgot he said it the first time or like he is playing a part in an act.
He typically does not hug or snuggle. The beauty of this is in the moments where he actually sits down next to you and rests his head on you or actually lays with you. Those moments are so infrequent that you truly relish its sweetness when it does happen.
People are like objects to Zayne. Sometimes he will interact, sometimes he won't. He doesn't follow commands well, even when prompted.
He also has a wide array of facial expressions. He will say something and his face gets so animated going through a roller coaster of movements. It's funny to watch.
Zayne's favorite phrase is "Do this?" followed by some facial expression or movement.
Zayne is not devoid of affection. Instead, he has his own way of showing it. It isn't shown in the way you normally see it but rather, it is in a language of his own. He loves being tickled. He will walk into the room and say "T-ick-kle me!" He also touches you. He's been known to touch you in the face with an index finger when he is talking to you or sometimes he will run his hand up my leg. Honestly, it's a bit inappropriate (and we'll have to address that somehow) but it's his language and that's how he shows his affection.
I'm anxious to be able to help him more in this area as I worry that some of his unpleasant behaviors and frustration stem from his inability to express what he needs. In time, we should be able to see some improvement in this area.
Repetitive Behaviors
Zayne has many repetitive behaviors. Each are equally interesting and we have to just go with the flow, especially as new ones arise.
Every time we cross a bridge, Zayne will ask "Can I go on that bridge?"
He can't stand for buckles not be buckled. If we go to the store and he is in the cart, he has to be buckled in (his choice). If you were to go into my car right now, you would find every single seat belt buckled. As soon as I get out of my seat when we arrive at our destination, he runs to the front to buckle my seat belt. I can't tell you the number of times I've went to put my daughter, Dagny, in her car seat only to find her straps already buckled. He'll even buckle in my backpack if it's sitting there.
Zayne bounces up and down and flaps his arms when he is excited. He also contorts his fingers and usually has his pinkies up.
Zayne is the master of interesting noises at octaves I can't even recreate. From calling to our dog, Epic, to singing a little repetitive tune, the day is made up of a lot of little noises. Often times he will ask you to repeat them and usually you can't quite do it the same which is upsetting to him.
If you were to walk into our house, you would likely find things placed in seemingly random places. Zayne has a fire truck that he always places in the exact same spot on the kitchen floor. He likes to hang 3 spatulas on hooks and take the bag clips out of the drawers.
His newest interest is plastic spoons. I find them randomly placed everywhere. He likes to bang them together. Once he is finished, he drops it on the floor and asks me to pick it up and hold it (I'm prompted to do this by him saying "Get that!").
He will walk into the room, whisper a word or two to you and then walk away. One time, he walked over to me, whispered "Tonight" while touching my arm, and then left the room. He will usually repeat this over and over again, whispering something and then leaving the room.
When you tell Zayne no, he will sometimes repeat "No" over and over again very loudly. He does the same with "Not right now!", only he emphasizes each word. We're learning that redirecting is the only way to get him to stop this and behaviors, but sometimes that doesn't even work.
Zayne loves to take a bath but freaks out when you wash his hair. He will run out of the tub and screams for a towel at the sight of shampoo. He is also extra sensitive to sunlight. Sometimes I wonder if his baby blue eyes are so blue because they are missing a protective layer :)
He also loves for me to take pictures of him doing random things. "Mommy, take a picture of me eating my food." "Mommy, take a picture of me drinking this." I hear that many times in a day.
So many of Zayne's behaviors are challenging. We have to allow extra time to do certain things he responds the exact same way each time. We're learning to just let Zayne be Zayne and try to not let his behaviors affect us. That's easier said than done, especially when we're trying to do regular activities like dining out or grocery shop..
We sometimes worry about the next new repetitive behavior because they are not all harmless. Some more recent bad ones include spitting randomly throughout the house, trying to pick up his sister and dropping her, or even peeing in his room on the floor. It's difficult correcting behaviors in a child who doesn't understand penalties and worse, when you give something attention he latches onto that behavior. So we redirect until the behavior disappears.
Inspire of all of this, our son will always be uniquely himself. He will not aspire to be like others. His little spoons in the room and the way he says "Tickle me" is his little mark on this world and his little mark on our hearts. There's so much beauty in the chaos of autism if you just keep your eyes open. I hope by sharing this each of you will look at those mothers and fathers a little differently when you are at the grocery store or eating out. Maybe the best look to give is a look of understanding.
Here are some additional links if you would like to educate yourself more on ASD:
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