My Child has High-Functioning Autism —Here’s What You Can Expect

By Nicola Killops
September 23, 2022

When you hear names like Elon Musk, Nikola Tesla, Daryl Hannah, Anthony Hopkins, and Bill Gates, the word ‘autism’ is probably the furthest thing from your mind. These names are equated with success, innovation, talent and creativity. As you may have guessed by now based on the title of this article, these well-known icons have high-functioning autism or identifies as autistic.

According to the CDC, there has been a sharp increase in autism cases in recent years. In 2016, 1 in 54 children was diagnosed with autism—up from 1 in 150 in 2000. But these numbers are misleading. While it’s true more children are being diagnosed with autism spectrum disorder, it’s not because autism suddenly became more prevalent. More diagnoses are occurring because of a better understanding of the disorder, and due to more sophisticated assessment tools to help identify these children.

Better tools are necessary since many children on the autistic spectrum are considered high functioning (they require little assistance to function in their daily lives), making their autism difficult to detect. Before 2013, high-functioning autism (HFA) was diagnosed as Asperger Syndrome, but it was reclassified to ensure those on the high end of the spectrum had the same access to support.

Why the Autism Diagnosis is Important

My son was diagnosed with high-functioning autism when he was seven years old (as I’ve previously shared, along with my experiences raising him). It was not a simple process. I knew he was different and had been from specialist to specialist, but it took a while to pinpoint exactly what was happening. Many people didn’t understand my quest for a diagnosis, proclaiming it wasn’t fair to put a label on him. But they were missing the point: when you know what you’re dealing with, you become empowered. You can educate yourself and understand your child better. It prevents you from getting frustrated when they behave in certain ways because you know why.

As the names I dropped earlier indicate, an HFA diagnosis doesn’t prevent someone from having a reasonably straightforward education experience, functioning in society, or establishing families and careers. Still, it does mean that they’re often misunderstood.

Because high-functioning autism isn’t obvious, children are expected to behave in a socially acceptable manner—which can be extremely challenging. As a result, they are often ostracized, as they are still learning to adapt and adjust to their environment (sometimes referred to as ‘adapt or die’).

The diagnosis also comes with the obvious stereotyping. “Oh, you must love Big Bang Theory; you’re just like Sheldon Cooper!’ Sheldon exhibits extreme misanthropic behaviour and obsessive compulsion, sprinkled with a hefty dose of genius. And while my son often displays these typical behaviors, it is never to that extreme—and the same can be said for most people with HFA.

When you visit a school for gifted and talented children, you will be astonished to see how many of them meet the criteria for high-functioning autism (I experienced this many times over during my eight years teaching at a school for gifted and talented). Like those with autism, gifted children have heightened senses and are extremely sensitive to sound, light, sensations, and other sensory experiences. And because they are cognitively advanced, they have difficulty fitting in and interacting with their neurotypical peers.

Anticipate Different Behavior with Children who are Autistic 

Children with high-functioning autism (HFA) tend to have difficulty regulating their emotions. This can lead to extreme emotional reactions that others may consider over the top. Conversely, they may under-react to situations others would find distressing.

My son, now 18, had many incidents and misunderstandings throughout his childhood. When he was six, his beloved grandfather died. People were perplexed when he asked if we would ‘flush grandpa down the toilet’. It sounded callous, but his only experience with death had been with his pet goldfish.

In high school, a teacher was highly offended when he stated that he didn’t feel sad when the main character died of cancer in a book they were studying. She said he was cold and had no empathy for those who had lost loved ones to cancer. She didn’t give him a chance to explain, but he later told me that after having lost loved ones in real life—which really hurt—he couldn’t grieve for a fictional character because they weren’t real. Fair enough, right?

He would also become overwhelmed by too much sensory input and was often in trouble for ‘sleeping’ in class. The reality was that to hear and take in the auditory input, he would close his eyes to prevent the visual input from distracting him. And, of course, as his mother, I was constantly accused of making excuses for him if I tried to explain how HFA works.

HFA also comes with what others might think are strange habits and questionable manners, like obsessive tendencies and ritualistic behavior. Children with HFA are comforted by routine and predictability. As a result, unexpected deviations from the plan can seem catastrophic. For my son, Monday was red sock day, Tuesday was blue sock day, and so on. One Monday morning we discovered one of his red socks had disappeared, going to the big pile of single socks in the sky. It was the end of the world for him.

Children with HFA are also extremely literal and don’t always understand the nuances of figurative language. My son was horrified when someone asked if they could ‘pick his brain’. And the challenges are not limited to verbal language. Understanding body language, interpreting facial expressions, and ‘reading a room’ are almost impossible. This has made it very challenging to create and maintain friendships.

As a parent of a child with HFA, I have made it my mission to educate others on the nuances and complex nature of autism. Proper understanding is critical, so these young people have the space to be exactly who they are without apology. In addition, their mental health needs as much nurturing as the next child—perhaps, even more, considering the additional challenges they face, like rejection and intolerance.

The Challenges Today Often Become Successes Tomorrow 

Incidentally, Elon Musk attended the same high school as me. He hated it and school was a miserable time. He was bullied, tormented and even assaulted. Yet the school wears his alumni status as a badge of honor. I was reminded of this when chatting with a friend who moved to the UK recently. Her son also has HFA, and his first day at school had been a challenge. She knows my son has also had his fair share of teachers who didn’t have the patience to understand him. I told her, “The irony is that in 20 years, the teachers that gave them the hardest time will sit around their dinner tables, boasting to their guests that they taught our children.”

About the Author

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Nicola is mom to James, a 2E 18-year-old, and she lives in Johannesburg, South Africa. Nicola is a writer who is focused on supporting parents and teachers of children who are “different” according to commonly-held views. Before starting her career as a writer, she specialized in gifted education and taught at Radford House School, a school for gifted children.

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