By Micaela Ellis
I am fifteen and I was diagnosed with autism when I was two-and-a-half years old. Autism is a developmental disorder that shapes the way one thinks, acts, learns, communicates, socializes, and perceives the world. When a person hears the word “autism,” often the first things they may think of are one of two stereotypes. One image that may come to mind is the smart, quirky boy who is obsessed with trains but lacks empathy and emotions. One may also think of a person who needs to live with a caregiver or requires ongoing assistance and accommodations in life. Autism isn’t just one way, but rather it’s a spectrum. However, there is much more to this. Yes, many autistic people may need more support than an able-bodied, neurotypical person might, and there are also many other autistic people who don’t need very much support and are able to live successful lives in a society that caters to neurotypical people. A lot of autistic people dislike functioning labels, such as low functioning and high functioning, and see the autism spectrum as a color wheel rather than as a linear function. With the right accommodations, mindset, and support from others, I think that autistic people can thrive and lead great lives!
Just so you know, even though the term “autistic” may seem offensive to some people, many autistic people prefer identity-first language over person-first language. I don’t want the word “autistic” to be seen as a bad word. Even though some people use it rudely, I prefer to say that I am autistic over saying that I am a “person with autism,” because my autism is pervasive- I was born autistic and I will live the rest of my life as autistic. Autism colors every experience that I have, and if my autism was removed from me, I would not be the same person. This is why instead of person-first language, which puts the person before the disability, I use identity-first language. I can’t separate autism from who I am. I don’t use person-first language anymore because I shouldn’t have to remind people that I’m human. It’s also the same reason why I say that I’m a biracial person instead of a “person with biracial-ness.”
How Autism Affects Me
As an autistic person, I can get really into specific topics. The autistic community refers to these topics as “special interests.” A special interest is an intense interest in a topic. Interests can be really narrow, anything from reptiles to a specific movie or TV show. It looks like obsessions to non-autistic people, but these special interests can help autistic people cope. After a loud chaotic event, immersing your mind in a special interest is like a lavender bubble bath after a long, hard day. Over the years, my special interests have included Minecraft, certain book series, and Greek mythology. Currently, I am very intensely interested in natural and cruelty free cosmetics and health remedies, organic foods, and social activism.
Something else that’s usually hard for autistic people is taking perspective and predicting social reactions. People often refer to this as “mind blindness,” and this challenge has affected me in a few different ways. For example, understanding intentions was hard for me when I was younger. It was hard for me to tell when someone was acting with a negative intention. Sometimes, I thought someone was being nice when they were actually being rude. Other times, I thought someone was being rude when they were just playing around with me.
It’s also common for autistic people to have trouble with sensory processing. People with Sensory Processing Disorder may be very active, or may dislike certain textures, foods, tastes, smells, or may prefer their clothing to be made of a certain fabric. While it is common for autistic people to be hypersensitive, I was actually hypo-sensitive as a younger kid. This means that I would seek more stimulation and sensory input. I was very active in my early years and I didn’t seem to like hugs. I liked to be hugged very tightly, but someone outside of my family would think that I didn’t like when people hugged me if they just gave me a normal hug, because I would squirm away. I got a lot of occupational therapy until I was seven, and this helped me overcome some sensory processing challenges.
As a kid on the spectrum, I also liked for things to be predictable and stay the same. I used to read some books and watch certain movies repeatedly; I think I did so because I liked knowing what was going to happen. It brought me joy and comfort! When things were not predictable, or something was out of place, I would get really freaked out. If something happened, like a marble rolled under the couch or a toy fell in the pool, I would scream and cry. I still have issues with regulating my emotions when things get stressful.
Some autistic people engage in self-soothing behavior, also known as stimming. Examples of stimming include flapping one’s hands, rocking, humming, and many others. Stimming acts as a self-regulating action and it helps people regulate their emotions and stress, calm down, and manage sensory input. I sometimes stim by flapping my hands. I think that stimming needs to be understood as behavior that helps autistic people, and unless someone is seriously hurting themselves or other people in the vicinity, it should be accepted. Autistic people should be able to stim in their own households without shame, and they should be able to go into another room if they need to stim at school or in the workplace.
As you can see, autism has affected me differently at different times in my life. Currently, my biggest challenges are handling problems gracefully, moving on to different tasks and ideas when I get stuck on a certain subject, knowing my audience (as in refraining from making jokes that aren’t funny to everyone), brutal honesty, and oversharing. Support and honest feedback from others, who understand my challenges, and aren’t alienated by my lack of social understanding, can really help.
I also started performing with a local theater group a few years ago, and it helped me with my confidence, communication skills, and self-esteem. It was a wonderful alternative and follow up to more traditional therapies like OT, speech, and social skills, and it helped me a great deal! It helped because I got to use some of my skills with memory in order to memorize my lines and dance choreography. Theater classes provided structure, but they also gave me good opportunities to socialize and have fun with a variety of people. I was able to be around other people who share the same interest in and passion for performing, and I was able to learn how to socialize independently without an adult always facilitating or stepping in.
Sharing My Story
When I was twelve, I wrote, illustrated, and self published a book. My book, Autism Over The Years: A Twelve Year Old’s Memoir, is about growing up as an autistic person. In my memoir, I wrote about how activities such as playing and communicating with other kids were hard for me. I also included memories of behavior that people probably thought was weird, but in my perspective, totally made sense! As I share with readers in the closing pages of my book:
“I wrote this memoir because I want to show people how I see the world, as a person with autism. I want to explain how my life has been different from many other people’s lives, and how certain thoughts and ideas came into my mind that other people did not understand. I want to share why I did things that seemed strange to others… I want to put an end to the idea that autism is a disease that needs a ‘cure.’ I want to put an end to autism being a taboo subject.”
After publishing my book, I started presenting about autism to parents, professionals, elementary and middle-school students, graduate students, and school administrators. I’ve had many wonderful opportunities to give presentations and to do magazine and radio interviews in my area of Southern California. Outside of California, I’ve even done author presentations in Alabama and at The Green School in Guatemala!
My Future Goals
Currently, I’m working on writing my second book and continuing my work as an autistic advocate. In the future, I would like to go to college, write more books, and become a political leader. I want to change the way our country functions. I have a lot of opinions and ideas about our justice system, gun control, gender inequalities, and the climate crisis. I also want to change the way our country treats disabled people, LGBT+ people, and people of color. Many of these social issues align with my current “special interests,” so I become very passionate about them and very concerned about these issues facing our world. I think that this passion will help me as a political leader because it will make me more determined to do good for our country and I am obviously willing to invest a lot of energy into my interests and goals.
Micaela Ellis is fifteen years old and lives in Southern California. She was diagnosed with autism at the age of two and a half and has spent several years working to overcome the many challenges associated with this disorder. She is currently a ninth-grade student at an online high school. She is also a self-published author, autism advocate, and confident public speaker! Her book, Autism Over the Years: A Twelve Year Old’s Memoir, is available on Amazon and can also be purchased from her website, micaelaellis.com. Micaela can be contacted to present, virtually or in person, at schools, conferences, and professional development workshops. Connect with her at firstname.lastname@example.org!
Note: This article originally appeared online as part of a series on autism acceptance for the National Association of Social Workers, April 3, 2021.