“I have high-functioning autism!” Kayla announces proudly.
Any stereotypes of being “shy” or “socially awkward” are instantaneously shattered as she continues. “I really love animation…and fandoms. Mostly Harry Potter, Star Wars, Disney, Pixar, Animal Crossing…I love books. Anything bright or fun.” Her passions are evident, as Kayla can often be found wearing a shirt representing one of her fandoms and a satchel or backpack proudly displaying pins or key chains of characters she loves. I personally know that one of her favorite things in the world is a trip to Disney World and she never ends a trip without a trinket of her newest favorite character. Many words could be used to describe Kayla: energetic, bubbly, passionate, honest…the untrained eye would hardly know that she has autism. This of course stems from a lack of understanding that autism looks different in everyone.
“I remember feeling ‘different’ around 1st or 2nd grade,” she shares. Kayla went to auditory processing therapy and would arrive late to school. She recalls that her classmates just didn’t understand why she wasn’t there with all the other kids and why she got extra help that they did not. To her peers, it was “special treatment” rather than the accommodations and modifications she needed to help her succeed. Just like autism, auditory processing disorders may look different in every child. Kayla struggled with directions in particular. “I had a hard time following directions, especially when I was told what to do. It helps if it’s written down. I can’t remember all the steps,” she shares.
Kayla remarks that school was academically challenging for her. Accompanying her autism is ADD and ADHD, making it a challenge to stay on task and avoid distraction. Even while talking to her today, at the age of 28- almost 29 she would remind you- Kayla is easily distracted by a side story or anecdote. However, unlike in her younger years, she is able to say, “anyway, back to your question…” at the end of the story. Her learning challenges in school meant that aides went with her to classes, drawing extra unwanted attention. She often was placed in collaboration classes with 2 teachers which provided her with one-on-one attention. Teachers provided Kayla with fill-in-the-blank notes to make note-taking easier. “I just couldn’t write fast enough,” she admits. When asked about social challenges, Kayla doesn’t share any memories of bullying, but rather the theme continues of simply being misunderstood. Instead of recognizing her struggle, Kayla’s friends were simply jealous that she was placed in an easier math class and didn’t have to stay Spanish. It is easy to judge these friends, but the truth is that the general public is still fairly uneducated about autism. Perhaps the extreme cases are more well-known, but unless someone displays behaviors that society deems “autistic enough”, quirks like Kayla’s are often written off as just “weird” or “a little different”. In fact, I had the pleasure of going to high school with Kayla. With interests like music and theatre, I remember simply assuming she was one of those “drama kids”…which was extra judgemental since I also participated in choir and drama. I had no knowledge of her disability and regrettably limited knowledge about autism in general. Sadly, this lack of knowledge is not uncommon.
“I wish people knew that not all autism looks the same,” Kayla laments. “Just because someone doesn’t exhibit the symptoms that you think they should doesn’t mean they don’t have autism.”
She is adamant that individuals with high-functioning autism have their own set of challenges and one of them is battling preconceived notions. “A person doesn’t have to ‘look’ autistic. We can look completely neurotypical. We aren’t putting on a show. We aren’t seeking attention. This is who we are.” Perhaps Kayla’s undying love for books is to thank for her wide vocabulary and articulate way of speaking on matters dear to her heart.
Over the years, I’ve heard the age-old question: are we all on the autistic spectrum, just to different degrees? While perhaps this is meant by neurotypical individuals to be encouraging, Kayla protests that it sends an entirely different message. She asserts that in her experience, not everyone is on the autism spectrum.
“Yes, we all have quirks,” she explains, “but autism is so much more than ‘being quirky.’ Autism is a processing disorder.”
Sometimes loud noises overwhelm her. Even now, sensory issues like a tag on her shirt can provide enough distraction to upset her. Autism is more than liking your pencils to be in a particular order. Although Kayla’s life hasn’t always been easy, she assures me that there is beauty in autism. “I love that it makes me passionate about the things I love.” Kayla goes on to remind me of what she calls her “autistic interests”. Though she has loved animation and films her whole life, her newest obsession is Animal Crossing. Something else Kayla is passionate about is simply being happy. “I love anything that is bright or fun. Autism changes my outlook on the world. I try to find happiness in everything and try to make the best out of what I have.” Her claim is proven by the fact that she’s worn a smile through the entire interview.
One major benefit in Kayla’s life is her support system. “I have supportive family, friends, and workers despite the struggles.” Kayla attends “Puzzle Pieces”, a non-profit organization for individuals with intellectual disabilities. Workers are assigned to a client to help them meet individual goals. For example, Kayla’s activities include getting into the community. Kayla works on performing everyday tasks like ordering and paying for her coffee- “Dunkin’ Donuts is the best!”- and speaking to others in an appropriate manner. For Kayla, an appropriate manner is making sure her conversations with strangers are short and focused, rather than discussing her fandoms at length with anyone she meets. Kayla’s tells me that the workers at Puzzle Pieces have become some of her best friends. I certainly hope this is the case, since they way I developed a friendship with Kayla was, in fact, through being her worker at Puzzle Pieces. Our days were consumed with library visits, coffee runs, discussions of our favorite movies, and of course talking about boys.
Kayla conquered a new feat this year: joining the workforce. Kayla was hired by “Books-a-Million” and has maintained her job for a year. Though it has been overwhelming at times, particularly Black Friday which would overwhelm anyone, Kayla has thoroughly enjoyed her experience. Her duties include: shelving products, displaying merchandise, customer service, labeling, replacing magazines with new issues, unpacking boxes, janitorial duties, etc. Besides the obvious draw of being surrounded by books day in and day out, why has Kayla enjoyed her job so much?
“I found a community and I feel useful.’ It is an innate desire to feel useful and needed. Just like in her school years, Kayla may need a little extra help, but that doesn’t mean she can’t be a great asset. At Books-A-Million, supportive staff help her by writing down instructions and giving her pictures of what the final product should look like. Kayla is not ashamed of asking for her and her co-workers have willingly given it. The hardest part about her job is customer service. The truth is, that is often the hardest part of most jobs, and I’m amazed at her ability to keep calm in the face of confrontation. Few of us deal well with disgruntled, confrontational customers, yet Kayla does so gracefully, despite her additional struggles.
It was a sad day for Kayla when she was told that “Books-a-Million” was closing. In fact, the last few months of life have been extremely difficult for Kayla, yet she faces each day with a positive attitude. So what is next for Kayla? Simply learning to move on and face the unexpected. She also has a passion for sharing her experiences with the world.
“I want to educate people about autism because it comes in more than one form,” she says. For Kayla, it seems the first step is finding a new job. The next step? Changing the world.