Autism Perceived

Today we went to Target. We make an effort to go out on the weekends to get the kids out of the house and take the opportunity to teach both of them how to navigate the world. Sometimes it almost feels like normal, other times my husband, Isaac, and I come out exhausted for the rest of the day.

Today was somewhere in between. My 7 year old son, Jesse, is autistic and he’s had an amazing leap in development lately. He has had a burst in spontaneous language and appropriate scripting (mimicking someone else he’s heard in real life or on TV). Still not at a seven year old level but that’s okay progress is progress.

The thing is whenever he has a leap like this it seems to come with an uptick in meltdowns and aggression. Before and during the leap. Last week, he had a huge meltdown in front of his school, but today was different. He was on edge. No one big explosion but many little ones.

He was excited to be at Target but wanted to go and only see exactly what he wanted. Today that was video games, the mirror in the men’s clothing section and for some reason the women’s pajamas section. The problem is if Jesse’s in a section, he takes over the section; running, touching, jumping and bumping into other shoppers. We let him wander each for a short time but gave limits. We needed certain things and other people wanted to be able to shop in those areas.

As we tried to steer him away from the women’s pajama sets. He began to scream and yell “I don’t want to go” at us. Fellow shoppers watched as he went from an overactive boy running back and forth to a screaming, yelling and crying boy.

I used to stop to look around before but I don’t anymore. Why? It’s always the same looks of judgment and disapproval. I will say sometimes there are looks of sympathy or very rarely that one woman who continues with whatever she’s doing not even batting an eyelash. I like her.

I walked away with my daughter and as my husband was taking care of Jesse. Sometimes giving him less attention helps. He calmed and moved on until the next one.

Later, Jesse and I ended up in the boys clothing section. He did not want to be there but I needed to get him a jacket. He hid in the clothes and tried to run off. I tried to get him to look at the shirts that had fun characters on them. He wanted nothing to do with them.

A mom and her son, Jesse’s age, were walking through. She was asking him what size he prefers and if he liked this or that. They laughed and talked about some practice he had just come from. I couldn’t help but notice as she would glance at us every so often. She did not approve of the way Jesse was behaving and clearly thought less of me for pretty much begging my child to just stay with me for another minute. I gave her a quick look that said “I can see you watching” and she moved on. I’m sure in assurance of her amazing parenting. Good for you sis.

The whole trip made me think about the perception of autism. Each person with autism is so different. I think that’s why many people cannot recognize it or understand it. There’s no distinct look to it. No two autistic people are the same.

I can’t even really give Jesse a label or function, because nothing sums him up. Like any person he is a spectrum on his own. This makes it hard to explain to him in any one way that others will understand, but that’s also what I love about him.

I just hate seeing the way people see him in these short encounters in the world outside of our bubble.

I know exactly how Jesse is usually perceived.

He is perceived as a brat. Isaac and I are perceived as bad parents. When Jesse was younger it wasn’t as bad, but the older he gets the more the sympanthly goes away.

Jesse is the way he is because he is autistic.

Jesse can speak, but cannot communicate like a typical seven year old. His speech is mostly scripts, mimicking us and familiar terms he uses over and over. He can grow frustrated not being able to express himself. His voice does sound like any other little boy. If you were walking by and heard him you would have no idea of the language delay.

Jesse regulates by moving. He does not hold still well, especially out in public or when he is excited or anxious. He’s hands are always twisting around or touching things. We tried to find spaces for him to move around, but you will never find the kid holding still.

Jesse is a sensory seeker. He has to touch everything but lacks the understanding of why he can’t. He LOVES to lay on the floor. We remind him it isn’t always okay to touch everything, but something in him cannot resist. Gross public floors are a no for me. Out and about I’ll see him plop down out of the corner of my eye and I’ll say “nope, we don’t lay on the dirty floor” and usually he’ll jump right up.

Jesse likes Star Wars and Legos, but loves Peppa Pig, Sunny Bunnies and Word Party the most. Shows made for toddlers. He’s often singing their songs or acting out an episode. Sometimes he gets the whole family involved. We love joining in his world.

Jesse has a hard time interacting with peers. He probably won’t respond to a stranger’s question. Even when we run into kids from school. If they come up and say hi he might just laugh or try to touch their face, he’ll usually just ignores them.

He does not understand personal space. If he’s determined to get somewhere he may attempt to walk right through you. I do try to navigate him around people and apologize when he walks into someone.

Jesse can follow two step directions on a good day. That’s why you’ll see us repeating things to him or reminding him of what he is doing.

He is also just our son. We don’t let him get away with screaming at Target but we have to go about calming him in a different way. We stick by his side and guide him through the world. We aren’t treating him like a toddler, we are teaching him and protecting him.

In our home Jesse isn’t disabled. We create a space for him. Yes, we deal with meltdowns, we help with life skills and take safety precautions, but we know no different. It’s our life.

It’s the outside world we have to worry about. That’s where he isn’t able to do things on his own or get the help he needs.

I write this, like I do everything about Jesse, to spread awareness. If you see someone like Jesse out in public. Maybe give a kind smile or just not stare. Maybe explain to your kids why someone may be acting that way. Maybe just be the love and acceptance we all need.

Be the love.