My Son Doesn’t Want to Be Autistic

About two years ago, we sat our then nine-year-old son down to review test results from the child psychologist he’d visited a few weeks earlier.

“Did she say I’m autistic?” he asked.

“Yes,” I said. “You are Autistic.”

He was silent momentarily and finally replied, “But I don’t want to be Autistic. The kids at school will just make fun of me more.”

He was only in third grade at the time and was already experiencing bullying by other students.

I know any child could experience bullying, but Autistic children are more likely to experience bullying than non-autistic children. Bullying is defined by the CDC as “a form of youth violence and an adverse childhood experience” and can be:

• physical — pushing, shoving, kicking, etc.
• verbal — name calling, threats, etc.
• social — excluding another person or avoiding them
• damaging personal property

The painful part is knowing that it won’t end anytime soon. He will always be different and differences are targets.

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My son’s first bully actually came in the form of an adult: his second preschool teacher. She was a staunch stiff-necked British woman with a permanent sour face.

We didn’t know at the time that my son was Autistic, but the traits were present. Like many Autistic people, he had a hard-wired need for fairness. I remember one issue brought up in a conference session with the teacher. My then three-year-old had a meltdown because he didn’t want to wear his jacket on the playground. I sensed that she wasn’t telling us the whole story, so I turned to my son and asked him why he refused to wear his jacket.

“Because Lilly doesn’t have to wear hers,” he said. Lilly’s mom worked at the school, and Lilly was allowed to run down to her classroom and ask permission not to wear her jacket. My son wanted the same treatment. He wanted to call me and ask if he could not wear his jacket.

“…unfairness is irrational and is caused by prejudices, dislikes and ulterior motives that don’t appear reasonable. Many autistic people see the unfair behaviour as fundamentally irrational and therefore pointless…autistic students can present as very tricky to manage in class as they won’t do things ‘just because’ — they need things explained and teachers don’t often like having to do this.” — Pete Wharmby

Sour face also said he asked “Why?” too much when she gave them instructions. And, in true Autistic form, he’d refuse to follow those instructions without an answer. Autistics don’t grasp authority figures the way neurotypicals do. The instructions need to make sense to us.

His first preschool teacher believed in answering children’s questions, so when my son asked ‘why,’ she explained. She praised him for not blindly following orders and being inquisitive. And he always followed her directions after she answered him.

But this lady only saw this behavior as being naughty. She’d refuse to answer him, and he’d have another meltdown.

“When I say ‘jump,’ the children should jump,” she said.

We moved him into another preschool and warned the new teacher about his behavior.

A week in, the teacher at the new school pulled me aside, “That woman was a bully. Your son is wonderful. He just needs to understand the why behind things and adequate transition time. Any good teacher would know how to handle him.”

He thrived there through kindergarten.

But friction between him and authority figures started again once he entered public school. Like many Autistics, my son had a bluntness and directness about him that made others uncomfortable. His teachers thought he was disrespectful, and his constant need for ‘fair treatment’ in the classroom and calling out to students who touched or bumped into him gave him a reputation for being a difficult student.

His bluntness also contributes to his peers misunderstanding him — maybe even fueling the bullying. Of course, his other Autistic ‘quirks’ surely play into the negative impression other kids have of him like his need to information dump about his special interests, missing jokes, and starting every conversation with “Did you know?”

One kid in his second-grade class discovered he could make fun of my son quietly, out of earshot of the teacher, and my son would externalize his overwhelming frustration with a verbal outburst. The teacher would hear my son, not the instigators, and she’d assume he was starting the ruckus. So, he’d get into trouble, not the other kids.

For example, I remember one call from the principal about my son having an outburst at recess. He “yelled at the teacher for no reason.”

When my son came home, I asked him to explain what happened. When the teacher turned away, this bully threw a large rubber ball at the back of my son’s head. He told the kid to stop several times but it continued.

Frustrated and overwhelmed by the repeated abuse and the teacher not paying attention, my son yelled, “MS. SO-AND-SO! WHY IS [BULLY] ALLOWED TO THROW BALLS AT ME?”

The bully told the teacher it was once, and it was an accident. She didn’t believe my son and sent him to the office for disrespect.

Occurrences like this continued. The bully and his pals would purposely kick my son’s chair during class. He’d tell them to stop. Then he’d tell the teacher who believed the bully’s excuse about it being an accident. Then, he’d finally explode with a loud verbal meltdown.

And off to the office, he was sent while his bully got away with it.

We’ve spent so much time at home working with him on how to process his anger. We’ve talked to him about the appropriate way to respond to these kids — ask them to stop and then speak to the teacher. Unfortunately, the teachers already had it in their heads that he was the problem child. Getting to the root of his outbursts was not a priority. They wouldn’t listen to him.

At this point, we realized a diagnosis could become our most valuable tool.

We figured out early on that he was Autistic. But my son didn’t need academic support, so going through the expense of a diagnosis didn’t seem necessary. That is until we needed to force the school to see my son differently.

He is different, and they need to understand it.

Submitting the diagnosis to the school triggered a series of evaluations. While it was determined (like we knew) that he didn’t need academic support, they did see the need for a behavior plan.

So that’s what we did.

We worked with the school and its teachers to put in behavior accommodations. A few we included:

• When frustrated and overwhelmed, he can ask to stand outside the room to recenter and avoid a meltdown.
• When he gets a little too blunt or direct, the teacher will speak to him privately about why it was inappropriate.
• And most importantly, the teachers had to pay closer attention to how other kids treated him.

Armed with a diagnosis, his teachers had a better view of him — they understood his differences, and started to notice how other students treated him.

Things improved dramatically.

His fourth-grade year was the first full year with his behavior accommodations. And his teachers — we’ve been blessed with teachers that take it to heart — used it well. Once they started to use the accommodations instead of sending him to the office, they got to know him better — the real him. One teacher said that he became her favorite student after figuring out how to work with him.

It wasn’t until the teachers realized that comparing him to the ‘normal’ student wasn’t the right way to approach him. He was different — he’s Autistic.

But the teachers can’t stop all bullying from happening. They can’t prevent the other kids from excluding him. All the other kids receive invitations to birthday parties, but he doesn’t. The other kids hang out on the weekends but don’t invite him.

He noticed.

We noticed.

And as he enters junior high next year, we are worried that it will only be worse.

Since Autistics don’t communicate as neurotypicals do, they don’t meet society’s expectations for ‘normal.’ The communication differences become increasingly noticeable throughout adolescence. Other kids will start to navigate the social nuances of communicating and pick up non-verbal communication skills, while Autistics rely on direct and honest communication. Even when Autistic children attempt to communicate like others, their inability to grasp all the social nuances can prevent them from fitting in.

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Like all moms, I wish I could protect him from the hurts and pains of growing up. I remember what it’s like to be bullied for being different, for being Autistic. While it breaks my heart that he doesn’t want to be Autistic, I understand why.

Though, his life, I tell myself, will be different than mine. I didn’t have a diagnosis and grew up in an abusive family — where being different made me a target. I always thought something was wrong with me. As a result, depression and anxiety clouded my childhood.

But he has a diagnosis and a family who reinforces that nothing is wrong with him, just different.

His family loves him as he is.

His teachers have a better understanding of him now.

We have plans in place to help him.

But I want him to have friends. I want his peers to see how wonderful he is and give him a chance. It’s overwhelming to think of the isolation and exclusion he may continue to experience.

While chaperoning a field trip for his gifted class, one of his teachers leaned across the bus aisle and said, “My son is just like yours. Kids picked on him, and he didn’t have friends. But in high school, he found his people, other kids just like him. So will your son.”

I’m grateful to her for those words. Does it make it easier? No. But it does give me some hope? Yes. High schools around here are HUGE. There have to be kids he can connect with.

I’m still holding out hope for a positive junior high experience.

All we can do is support him and help him embrace who he is.