Autistic Photographer Shauna Phoon Captures the Perfectly Diverse ‘Faces of Autism’

Shauna Phoon never understood why she felt like an “other.”

After nearly a decade of therapy, of trying to understand why she saw and digested the world so differently, Phoon received an autism spectrum disorder (ASD) diagnosis in her early 20s. “I was finally able to put all these pieces about myself together,” Phoon, now 26, told The Mighty in an email. “It was a very cathartic process.”

The photographer from Melbourne grew intrigued by the other autistic people in her life — how similar but how diverse they were to her and each other.

“After years of feeling ‘other’ to everyone else, after years of feeling different and isolated, I finally feel like there are other people who understand the innate sense of ‘unlike’ that I do,” Phoon said.

Around the same time, she found new research from the Center for Cognitive Brain Imaging at Carnegie Mellon University that collected fMri brain scans of people with and without autism. People without autism had consistent activation patterns between different brain regions, while autistic people had inconsistent patterns; each autistic person, as Phoon puts it, showed “a unique pattern of communication strengths.”

The study inspired her to try to capture both the universal experience but wonderfully broad spectrum of autism in photographs — a project that’s become her growing series “The Absence of Normal – Faces of Autism.

self portrait of photographer sitting facing mirror
Self-portrat of Shauna Phoon, 26, photographer behind “The Absence of Normal” | Interests: Rocks (lapidary), making/building/fixing, organizing things, eating all the food. In three words, she describes herself as “contradictory, flicker, odd.”
man slides down arm rail
Karl Glaser, 25 | Photo by Shauna Phoon, from “The Absence of Normal.”
autistic man smiling, leaning against wall
Karl Glaser, 25 | Photo by Shauna Phoon, from “The Absence of Normal.”

Phoon’s subjects, so far all from Melbourne, range in age, gender identity and race. She asks each person about their interests and to describe themselves in three words. Karl Glaser (above), 25, likes “programming stuff, experimenting with stuff, surfing and skateboarding; and describes himself as a “beady weasel gremlin.” Nathaniel (below), 10, has an interest in blood magic, necromancy, Legos and video games; and describes himself as “evil. king. bear.”

“We are all intrinsically different,” Phoon writes on Tumblr. “What unites us is our exception to the norm.”

boy wearing cape drinks juice box
Nathaniel, 9 or 10 | Photo by Shauna Phoon, from “The Absence of Normal.”
boy in cape poses like superman
Nathaniel, 9 or 10 | Photo by Shauna Phoon, from “The Absence of Normal.”

Even in its early stages, making the project has had its powerful moments — one in particular was caught on camera, but not by Phoon. While photographing Glaser, Phoon’s father texted her that her dog was sick. She put down the camera and sat on the sidewalk next to Glaser to process the news. Her partner photographed the scene, noting the two looked like “two children who lost their ice cream.” Glaser later gave Phoon a lift home so she could spend the last 10 minutes of her dog’s life with him in her arms. Phoon says if he hadn’t driven her, she would have missed it all. Despite the sad story behind it, Phoon cherishes the photo below.

Glaser and Phoon sit on sidewalk
Glaser (left) and Phoon

“It feels like a moment of solidarity and kinship to me,” she told The Mighty.

Which is sort of the point of the whole project.

“I love and admire all the different ways in which we appear on the spectrum,” she said, “and I hope to be able to capture the appreciation and solidarity I feel for my autistic ‘siblings.'”

man smiling, black and white photo
Falan Sol-Avar, 32. Interests include writing, deconstructing complex systems (to “fix” them), experimenting, living forever, creating utopia (and getting kicked out). In three words he’d describe himself as “Borg. Resistance. Mastermind.”

Phoon hopes autistic people who find her project will see others who, in ways, look and act like them, but still own their individuality. “I want them to see there isn’t a ‘right’ or ‘wrong’ way of being autistic,” she said.

At the same time, she wants the portraits to defy how the media usually portrays autism.

“We are not just [a] stereotype,” Phoon said. “We don’t need to be ‘cured’ or ‘fixed.’ Our differences make us unique but no less deserving of acceptance and love.”

person sitting in garden
Kelly Nicholas, 32 | Photo by Shauna Phoon, from “The Absence of Normal.”
person standing against wall
Kelly Nicholas, 32, has interests in reading, video games, costuming, acrobatics and dance. Nicholas is a non-binary genderqueer. | Photo by Shawna Phoon, from “The Absence of Normal.”
photographer's grandfather
Phoon’s grandfather, “who is definitely on the spectrum. I like to think of him as the river from which my autism flows.”

If you would like to participate in Phoon’s project, head here. She is actively seeking more subjects. For more photos from this series, head here.


When a Boy Asked Me If I Was Sure My Son Has Autism

Today, my son Braeden and I took advantage of the warm weather and ventured to the park after his school day ended. The park is a place I enjoy best when it’s just Braeden and I for many reasons.

For the first hour, I hovered close to watch Braeden attempt to join in with other children or just say “hi” to introduce himself. After several rejections, relentlessly he succeeded and was now “it” in a game of tag. The excitement of being “it” overcame him with a smile so bright, and he played the game with the intent to never not be “it.” To the little girl whose four small words screamed acceptance — “Hi, what’s your name?” — thank you!

toy and wristband

Shortly after the game started, I observed small interactions between Braeden and his newfound friends. One boy grabbed Braeden’s autism safety alert wristband and exclaimed, “What’s this?” Proudly, Braeden responded, “It’s my wristband that says I’m a boy with autism.” The boy turned to me and said in surprise, “He has autism?” I smiled and simply said, “Yes,” not knowing the earful I was about to receive.

This boy, who was no more than 10 years old, began to assure me that my 7-year-old son with autism was very lucky. I thought, how nice of him to say — but that thought was shrouded by what followed. “He’s smart, are you sure he has autism? And my mom says autism comes from vaccines. Was he vaccinated?” I couldn’t believe what I was hearing as I held back my words and smiled because this little boy is 10 and I’m not his mother. It wasn’t easy. As an autism advocate, I wanted to voice my opinion — but I was once 10, and what my parents said was law.

To the vaccination and autism expert of a mother, I wish you were there today so I could understand this theory. It’s one I’ve heard before, but it was recently stated by the Centers for Disease Control and Prevention (CDC) that there is no link between vaccines and autism. To the next parent wanting to explain autism to their child without autism, proceed with caution; your words mean more than you know.

The truth is autism is not easily defined because it’s a spectrum disorder, and although there are similarities among children with autism, the differences set each child apart. If you want help defining autism, I suggest this great book I purchased to teach my own child with autism, “Ethan’s Story: My Life With Autism.” If your child is an auditory and visual learner, try this great video on YouTube, “What is Autism.” Although my favorite awareness educator is my 7-year-old with autism: “Autism means my brain thinks a little bit differently than everybody else, but that’s okay, because it’s kind of cool that I see the world in a beautiful way.”

boy sitting on slide
Kathleen’s son, Braeden, at the park.

The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Applied Behavior Analysis Therapy for Kids With Autism Will Be Mandatory Benefit for Federal Employees

Starting in 2017, all health insurance plans within the Federal Employees Health Benefits Program — covering federal employees, retirees and their dependents — must include applied behavior analysis therapy (ABA) for children with autism.

A letter sent last week from the U.S. Office of Personnel Management (OPM) Healthcare and Insurance to carriers read:

Carriers may no longer exclude ABA for the treatment of autism spectrum disorder (ASD). We expect all carriers to offer clinically appropriate and medically necessary treatment for children diagnosed with ASD.

ABA therapy is “the process of systematically applying interventions based upon the principles of behavior theory to improve socially significant behaviors, including reading, academics, social skills, communication and adaptive living skills, to a meaningful degree.”

“[The Office of Personnel Management] has closely monitored both the research supporting ABA and the provider supply which has increased in recent years,” OPM spokesperson Edmund Byrnes told Disability Scoop. “Our 2017 requirement reflects the needs of our members, the growing number of qualified providers who can safely and effectively offer ABA, as well as research linking behavioral interventions for children with ASD with positive outcomes.”

Scott Badesch, President/CEO of the Autism Society of America, told The Mighty his organization likes to see more and more insurance coverage for “important services for helping individuals living with autism each day.”

We encourage parents of younger age children to get as much reliable research on various treatment efforts and talk with professionals on the merits of each treatment and support in terms of helping their child maximize their quality of life,” he said in an email.

h/t Disability Scoop

Tara Keegan and sons

Cop Steps Up When Boy's Public Meltdown Is Mistaken for Kidnapping Incident

Tara Keegan was in the process of transferring her 8-year-old son Caleb to his tutor’s car near a convenience store in Clayton, North Carolina, last month when he had a meltdown. Caleb, who has autism, bolted from the parking lot and ran towards the road. After chasing after her son, Keegan carried him back to their car. A concerned eyewitness called the police fearing a child abduction was in progress. Clayton police officer Jeff Young arrived on the scene.

After asking Keegan and Caleb some preliminary questions, Officer Young and his partner gave the two plenty of space to get settled back in the car.

He (Young) could have made a bad situation worse,” Keegan told the town’s official website, (When Caleb was 6, the family had an unpleasant experience with a law enforcement officer after he’d eloped from home.) “Instead, Officer Young spent upwards of an hour with Caleb, and it really made him feel safe.”

Keegan told The Mighty she had no problem with the bystander calling the cops, as what was unfolding very well might have looked like a kidnapping. After Caleb calmed down, Young gave him a tour of the Clayton Police Department and introduced him to the department’s K-9 officers, Abel and Major.

“People like (Officer Young) not only change lives, but they encourage others to meet people where they are without shame or judgment,” Keegan wrote in a thank you note on her Facebook page, according to “In fact, my son said, ‘I liked that cop ’cause he didn’t say I was bad or not normal.’”

On Friday, Keegan shared the story during a breakfast meeting at the Clayton Chamber of Commerce, where she thanked Officer Young, who was in attendance. Keegan sent The Mighty a copy of the speech she read. She praised Young for handling the situation and for helping her speak out about her son.

“Officer Young was the first person Caleb has come into contact with that accepted him and made him feel special,” she wrote in the speech.  “I am used to people having ridiculous opinions, notions and advice; he had none of that. He just had empathy and grace. A lot of feelings go along with having a child with autism – feelings you certainly don’t share with many. To put Caleb’s diagnosis on public display has been huge for me in both healing and accepting. Officer Young is a major contributor to me being able to do so.”

“Law enforcement and EMTs need to be aware of how these children operate,” Keegan told The Mighty when asked what other cities and states can do to follow Clayton’s lead.

It was before 9 a.m. on a Monday, and Tara Keegan hadn’t even had her coffee yet. Inside a local convenience store, her… Posted by Clayton Police Department on Monday, February 29, 2016

To the Young Adult Newly Diagnosed With Autism

Dear Newly Diagnosed Autistic Young Adult,

I remember being in your shoes. I remember being diagnosed the day before my 18th birthday with Asperger’s syndrome. I remember being dumbfounded. I remember being in denial. I remember being confused. I also remember being angry and not being able to make sense out of how in the world someone like me, who got stellar grades, worked my behind off, and was happy exactly how I was… I didn’t understand how someone like myself could possibly be…. autistic. Truth be told, I was fighting hard against many of my own previously hidden biases against people who’ve been labeled “autistic” or having “special needs” or any of their like counterparts in terms of labels.

I always thought of individuals with autism as only being the way I remember classmates who had “classic” autism behaving. I didn’t see myself as being “significantly” socially challenged, nor did I view myself as having “special needs” simply because others didn’t see the world the way I did. In my mind, others had an obligation to conform to my view of the world, my way of interacting, my sensory overload reactions, etc. I didn’t see myself as living with the level of deficit others were telling me I exhibited.

I took about a week to gather my thoughts, to cry my tears and to process this new information with my parents before I allowed them to share my diagnosis with any family or friends. Before I decided I wanted to continue my lifestyle of living life as an “open book,” I allowed myself to grieve the life I thought I’d had, and suddenly found myself feeling as though I were losing. Once I felt I’d had enough of my personal grieving time, I decided to take life by the horns and type a Facebook status formally informing my friends and some family that I had received a formal diagnosis of autism. Posting that status was nerve-wracking, and I was afraid of the judgment I believed I would receive in return for my honesty. Much to my surprise, I received nothing but positive reactions, encouragement and thanks for my bravery in sharing my new reality with my little world on Facebook.

The moral of my story is that an autism diagnosis does not change who you are. It doesn’t change your personality or the features people love about you. It doesn’t change your future or what you can do with it. An autism diagnosis is just a guide and a tool to help you better understand yourself. A diagnosis of autism helps you and those around you better understand why you do what you do in terms of social interactions, behaviors in general, sensory processing challenges and much more. A diagnosis is an aid to you, those you love and those who try to help you. Stay strong, and remember this is a beginning, not an end. 

Autistic Too

Woman sitting next to a pond in a park

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Family Opens Gym for People on the Autism Spectrum

When Adam and Dedra Leapley’s son was about 15, an active lifestyle was difficult to maintain.

Like with many others on the autism spectrum, places like gyms and organized sporting events could often be overstimulating and uncomfortable. The Leapleys tried to hire a personal trainer but struggled to find a perfect match — until they met a trainer whose sister was also on the spectrum. Their son, now able to connect with someone who better understood him, began to find joy in fitness, and his healthier lifestyle seemed to help in all areas of his life.

“It was like a transformation,” Adam Leapley recalls. “It was eye-opening for me.”

Thrilled with the positive impact of exercise, the Leapleys asked themselves, Why isn’t there a fitness center for people with autism spectrum disorder? 

Their answer was to open their own. In June 2014, ASD Fitness Center, a 5,000-square foot facility, opened in Orange, Connecticut.

ASD fitness center logo
Photo courtesy of ASD Fitness Center
Organizers cut ribbon on opening day of ASD Fitness Center
Photo courtesy of ASD Fitness Center

The ASD Fitness Center offers small group classes and one-on-one sessions for people ages 5 and up on the spectrum, and their families. Most members are between the ages 10 to 17, but adults on the spectrum also attend. Its eight trainers all have backgrounds in working with people on the spectrum, which Leapley says is key to their success. They provide personalized individual fitness programs (IFP) with options to add nutrition and life skill goals (like riding a bike). Group classes include adaptive yoga, hip-hop, karate and circuit cardio. The gym itself has sectioned workout stations to provide privacy. Its walls are beige, there’s no bright lighting, music, and mufflers under the floor help tone down echoing sounds. They also passed on the typical “speckled” gym floors (usually chosen to hide dirt) and just clean more regularly.

“We try to keep it as calm and comfortable as possible,” Leapley told The Mighty.

lower body station at ASD Fitness Center
Lower body station at ASD Fitness Center
student takes adaptive karate
Young gym member taking adaptive karate at ASD Fitness Center

Right now, 84 families are members; Leapley anticipates that number capping at about 110-120, based on available resources and space. Some members travel up to an hour to work out. Leapley’s son, now 20, works at the gym; and they hope to hire more people on the spectrum.

To make all this possible, Leapley, who’s also an investment manager, gets help from an advisory board that includes pediatricians, professors, therapists, special educators, fitness CEOs and more. He credits Dr. Fred Volkmar, of the Child Study Center at Yale University School of Medicine, for taking interest when the fitness center was merely an idea.

A few gyms around the country exist for toddlers and young children on the spectrum; others offer programs, sessions or special events for older children and teens with autism, but as far as Leapley knows, the ASD Fitness Center is the first of its kind in the U.S.

He says the next step is getting into schools and training educators in adaptive physical education (PE). Though schools are required by law to accommodate students with special needs, unfortunately, Leapley says these efforts often aren’t executed well. Trainers from his gym are working to help educators understand how to motivate students on the spectrum in comfortable, appropriate ways so these students can be included and get daily exercise at school.

“Our goal is to reach out to as many people as possible,” Leapely told The Mighty.

For more information, visit the ASD Fitness Center’s website and Facebook page.

h/t Hartford Courant

Real People. Real Stories.

150 Million

We face disability, disease and mental illness together.