autism,  empathy,  siblings and autism

Autism Doesn’t Exist in a Vacuum

There have been very few moments where J and W haven’t shared the same space. They’re 22 months apart, and in the early days, it felt like I had twins. Because of J’s developmental delays and W’s precociousness, they moved in the same sphere. We had teachers and speech therapists in our house weekly, and while the adults struggled to engage J and keep him attentive, W sat at the table, ready to learn, the wheels turning.

W attended J’s early intervention preschool as a peer model, pre-screened to meet requirements of academic readiness and the ability to have compassion for children with special needs. She moved around the preschool classroom with ease, aware of her brother, but aware of all of the kids with special needs in the room. At 3 she was already navigating the balance between self discovery and enrichment (she loved the craft table, music, and academic activities) and the compassion, patience, and kindness needed to interact with her special needs peers.

There have been only three times in J and W’s life where they haven’t been in the same school. The first time was when J started kindergarten and W had her last year of preschool (J is an October baby and W is an August baby and at the time of public school enrollment they fell on each end of the cutoff). The second time was when J started middle school in grade 6 and W was finishing off grade 5 at the elementary school.

This year is the third time (and last time) where J and W will be in separate schools until they graduate from high school.

These years have been good for W. She gets to be in the “real world” without her brother in the same building, occupying the same space. She doesn’t have to see him in the hallways, be self-conscious of his autism outbursts. She gets to be W–just W. Without J or the autism.

That’s what I’d like to think, as a parent. That W gets this year to herself an navigate the hell that is middle school in the most “normal” way possible.

Friday afternoon, she slammed the trunk extra hard after she had set her violin in the back and started frantically changing the radio stations as soon as she buckled herself in the car.

“How was your day?” I asked hesitantly. I know her 13 year old emotional tells.

“My day?” she was already fuming. “Didn’t you check your phone?”

Crap, I thought. She must have sent me an email. I must have screwed up something like the after school pickup time. I’ve done that a few times in the last couple of months already.

“You didn’t pick up when the school counselor called. Where were you?” At this point she started tearing up.

At this point, I realized something substantial must have happened. This wasn’t just a school pickup screw up.

“Okay, what happened?” At this point I’m thinking she must have bombed a test. Not an “80%” bomb that would be devastating by her standards. This had to be an “F” test.

She begins the story. It’s really disjointed. I have no idea at first where this story was taking place. Who was involved in it. And then comes the part that is the only thing that matters. Somebody in her English class used the word “autistic” to insult another kid.

At first, I didn’t know what to think. Honestly, my first thought was “Seriously, kids these days know what autism is?”–forgetting in the moment that it was being thrown around as an insult.

It happened during a verbal argument between a girl and a group of boys. The girl hurled it out, then remembering W was standing there, quickly reeled back and apologized. Surprisingly, W was very forgiving toward her. “She just got caught in the moment, you know sometimes you say dumb things. She apologized. But the boys mom–they’re the ones who kept it going. They said it was a “great insult.” That they’d have to remember it for the future. Some of these boys who know J, mom. They know he has autism. I’m so mad they KNOW better.”

She told me that she held it together until her teacher asked her what was wrong, and that’s when she started crying. She ended up talking with the counselor. Her teacher and counselor offered to talk to the kids. W insisted that she didn’t want that. She wanted to take care of it.

“I’m okay now, mom,” she said. “I’m so glad it happened in English class. I’m so glad I chose autism for my informative speech. They need to know about autism–really know about autism.”

She had made that decision weeks ago. Weeks before the autism insult happened.

“Maybe then they won’t be so quick to make fun of it.”

Even when J isn’t around, J is around. W never really gets to “escape” the autism life. She is hyper-aware of kids with special needs. She is hyper-aware of the cruel insults and casual use of offensive labels. This isn’t a girl who has some agenda for being politically correct. This is a girl who sees how hard people who are born disadvantaged have to work to have a fighting chance for equal treatment in the world around them. She sees how hard it is for these people to learn and do things most of us take advantage of. She knows that words like “retard” and “mental,” phrases like “short-bus” thrown around as casual jokes aren’t jokes at all. They’re offensive. They’re offensive to the people with special needs and they’re offensive to the people who love them.

This week, it wasn’t J who struggled with autism it was W.

While W was battling insults and stigmas this week, J was winning his own battles. He participated in his PE swimming unit, navigating the change of meeting place for his class, changing into his swimsuit, handled the weird acoustics that come with an indoor swimming pool. He had super understanding teachers with him–a super supportive para to help him be successful. J NAILED his choir concert this week. This was the best choir concert he’s ever had. He stood in his robes, stood still and didn’t fidget, kept his eyes on his choir teacher and even sang. The progress from just 3 months ago was almost unbelievable.

Autism doesn’t happen in a vacuum. It doesn’t just affect one person. It affects so many people. It affects the teachers and parents trying to help someone with autism succeed and grow to their full potential. It affects siblings and friends.

W came home Friday hurt and angry, as she should. Words can hurt. But she also came home ready to make her autism presentation the best it can be. She knows that words can move and educate too.






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  • Carol Forster

    I wish I had known about the concert, I’m sure it was wonderful! It is amazing to watch the gtogether that he has had. I also wish I could hear Whitney’s presentation on autism. I am sure she will rock it!