More Than Just a Puzzle Piece
by Karina Le | published Mar. 18th, 2021
TikTok has been a platform to host many forms of entertainment. Though TikTok was initially made for comedic content, some creators have used their platforms to educate their audiences.
Creators like Paige Layle have spent a considerable amount of time using their platforms to educate people on autism spectrum disorder.
Autism Spectrum Disorder
In 2020, the Centers for Disease Control and Prevention recorded an estimate of about 1 in 54 children being identified with autism spectrum disorder (ASD). That’s a significant amount of the population, especially considering that autism itself is a lifelong disorder.
ASD, or simply autism, is a developmental disorder. It is not a mental illness in the same way depression or anxiety is. Autism is a disorder which is lifelong, and impacts the individual distinctly and uniquely as they grow up.
Paige Layle, a creator on TikTok, uses her platform in order to raise awareness of people who have autism.
“It impacts every single aspect of who I am and what I do,” Layle said regarding her autism.
A common misconception about autism is that there is a distinct way a person acts or appears that immediately reveals to others that they are autistic. However, that is absolutely not the case. There is a specific reason why autism is labeled as a spectrum.
Natalie Boice-Pardee, a Spectrum Support Coach (SSP) with RIT, explains the uniqueness of each student.
“If you know someone with autism, you know one person,” said Boice-Pardee. “You cannot generalize. There are commonalities, but every single student is different, their needs are different.”
“You cannot generalize. There are commonalities, but every single student is different, their needs are different.”
Rather than think of autism as a straight line where someone falls on one end or another in terms of “high-functioning” (not needing much support) versus “low-functioning” (needing more support), think of it as a color wheel. Some autistic individuals may have symptoms where their social skills may cause them difficulties in interacting with others. Other individuals with autism may not need that much support on social skills, but may need help in their organization and scheduling.
Each aspect to an autistic individual is very unique to themselves, and even down to how they identify themselves, it’s best to understand that person first and foremost.
Person-First vs. Identity-First Language
There’s a lot of stigma in regards to autism and the people who have it. There’s a lot of misconceptions about autism, but the most important thing to understand is that autism is not something someone turns on and off. It’s with the person forever, and something integral to how they interact with the world.
Identity-first language is the concept that when identifying an autistic person, you identify their disorder first. It’s about empowerment, and to instill the idea that having autism isn’t a lesser quality.
“I don’t have autism that I carry around me, I am autistic, I embody my autism,” Layle said, when explaining why she uses identity-first language.
On the other side, there’s person-first language, which identifies an autistic person as a person with autism. The concept of that is recognizing that you are talking to or about a person with feelings and emotions first and foremost. Their disorder doesn’t define them.
This distinction is a huge debate because different autistic people prefer one form of identification over the other.
Take Elizabeth Matthews, a third year Biomedical Engineering major, who was diagnosed with autism at a young age. They identify primarily with person-first language, a person with autism.
“It feels more [comfortable] to me ... I’ve been exposed to that a bit more,” Matthews explained.
In the end, it depends on the autistic person and what they prefer, and it’s best to simply ask in regards to their autism.
“It’s something every person feels differently about, and it’s up to each person to respect someone’s views about how they want to be perceived and identified,” Boice-Pardee said.
Spectrum Support Program
RIT offers a program specialized to assist students with autism. Each student is given a coach to meet with each week, and the time allotted differs for each person’s needs.
“It’s so individualized and specialized to the person ... it’s not just academic, it’s holistic,” Boice-Pardee said.
Despite their small full-time staff of six members and some graduate students, the SSP works with the autistic student as a whole, giving them an additional support system for their college career.
“I have meetings with them every week and set goals for myself. It’s a very good support system,” Matthews said.
To apply for assistance through SSP, one simply has to fill out an application request form through student affairs.
“RIT is very diverse and accepting ... I don’t feel out of place,” Matthews said.
“RIT is very diverse and accepting ... I don’t feel out of place.”
However, helping the autism community isn’t just about giving accommodations to the people in need, but also to spread correct information out to the general public.
With autism, there are a lot of misunderstandings about the disorder. Oftentimes, autism itself is treated as a taboo word. Some clinicians are wary to even diagnose someone with autism due to the stigma around it.
One of the first results you get when you look up autism is a site called Autism Speaks. Though at first it looks like another resource looking to educate people on autism, many people in the autistic community are completely against Autism Speaks.
One of the points of concern many point to for Autism Speaks is how they split their budget. Only 1 percent of their actual donations go to help autistic people and their families.
Most of their research seeks to eliminate autism, or detect autism in the womb. Instead of working to benefit autistic people and educate communities at large, many autistic people view their actions as support for eugenics, a practice that is both harmful and unethical.
When looking for resources to help, make sure to thoroughly research first. Resources like Autistic Self Advocacy Network and Autistic Women & Nonbinary Network are especially helpful places to begin your search.
Ultimately, being aware is not simply learning about the topic; it is opening yourself to being educated, and finding ways to assist people in need.