Autism Actually Speaks:
A portrait project exploring the perception of young adults with autism
Photographed and Written by Phil Martin
Edited by Danielle Elliot
I recently came to the realization that people don't understand what autism actually is, or how it affects young adults. Other adults are regularly telling me that I was misdiagnosed. During the argument, I'm usually told that I'm too social or I'm too independent to be autistic. I find myself having to regularly google "official" websites that have researched how autism affects adults and I have to list the symptoms that I face. This is very disheartening to me. Whenever someone has an issue understanding that I'm autistic, I immediately get offended and become very defensive. I started this project to help tell the stories of other adults who are autistic and some of the challenges they faced growing up.
About the photographer
When I learned that I was autistic, I was in denial. I was unaware of what autism was but I knew one thing... I didn't have it. I spent four years trying to complete the 9th grade. I never faced any real difficulties with other students because I was only present for about 10 percent of the school year. The rest of the time was spent riding metro trains and befriending metro employees. All my life, I felt more comfortable with adults. I felt as if I could relate more with them. I didn't feel judged. I knew they would never hurt me. After three years of horrible attendance records, the local school system decided to have me tested for everything under the sun. I was diagnosed by the contracted psychologist with social anxiety, and agoraphobia. The agoraphobia was a misdiagnosis because I didn't tell them that I would skip school to ride trains, they just thought I never wanted to leave the house. After seeing a specialist six out of seven days a week for about two months, I was diagnosed by the University of Maryland with Asperger's Syndrome. I was then transferred from public school into a school specialized to deal with students with social disorders. My first day of school, I refused to get out of the car. I cried and cried to my mother but she wouldn't break. I didn't want to be classified with a certain "R" word that I had heard people call students who rode the shorter buses. My mother had to go in and get the principal and vice principal to talk me off of the ledge that was being seat belted and locked in my mother’s car. In the first week, I saw students get restrained, students yelling, screaming, and kicking in the halls, and students who didn't understand my need for personal space and fear of loud noises. I wanted to be anywhere else but there. It was there that I learned how autism effected me. I noticed that I had a hard time keeping eye contact. I would stare at mouths, foreheads, noses, and my own hands instead of looking someone I was speaking to in the eye. I didn't really understand why but I knew that I focused better looking away from who I was talking to. More and more, people were telling me that I was rude, disrespectful. They said I didn't know what to say or when to say it. I stopped thinking about what I was saying when I was saying it. If you looked bad in your outfit, I made sure you knew it. If I didn't agree with your views, you knew it immediately. I also developed "food allergies". If you know anything about autism, you know that diet is a huge part. Most individuals with autism have a unique appetite and there is no changing their mind on it. I became tired of people trying to make me try new foods, so I became "allergic" to it and I've never looked back.
One of the biggest issues that I continue to severely struggle with today is understanding others’ attitudes (both positive and negative) and reading facial expressions. It took a lot of visits with my school therapist Korin Chase to help me understand and accept the effects of autism. Mrs. Chase was the turning point in my life with autism. It turned from denial and anger to acceptance. I started learning how to use my gift to help others understand. All of these "steps" brought me to where I am today. I'm now a 26-year-old father of one with a good job and I'm not too bad of a photographer. If I could offer advice to anyone who's growing up with autism, it's to not care about anyone but yourself. You're only going to be around someone for a period of time. You have full control of your life, you just need to learn how to drive!
While traveling, I’ve had the chance to meet several other young adults with autism. I met Nicholas Rios while in Chicago, Illinois. Nicholas is a 17-year-old who was diagnosed at a very young age. He isn't very verbal, so I got to sit on the Chicago waterfront and talk with his mother, father, and sister. While I was on my way to meet them, I was worried about being intimidating. I thought about how I would feel meeting an almost seven-foot-tall, 400-pound giant. I would be terrified! I was happy to learn that Nicholas was just as big of a teddy bear as I am. Nicholas's mom and I spoke about situations and things that make her nervous when it comes to Nicholas and being away from home. She told me about a time where Nicholas came home crying and in pain. He had been injured during the day, but because he is nonverbal, he was unable to share what had happened. My heart almost broke when she told me about Nicholas's worse occurrence to date. One day while in gym at school, all of the students were participating in a group activity. The activity ended but Nicholas didn't immediately stop doing what he was doing. He was approached by a female staff member who didn't fully understand how to approach and address someone with autism, and Nicholas became irritated by the situation. A nearby male staff member wrestled Nicholas to the ground and laid on top of him while the police were called. When the police arrived they handcuffed Nicholas and detained him. Being verbally and physically aggressive with someone with autism is the quickest way to make a situation 10 times worse. When she told me this, my heart broke for Nicholas because I can't even begin to imagine what he was feeling when all of this was going on. This shows that the lack of understanding that exists even within our school systems and public safety departments. I took a 14-day journey across from D.C. to San Francisco, and meeting Nicholas was one of the best moments of the trip.
While visiting Minneapolis, the good folks over at Autism Speaks put me in contact with the staff of Erik's Ranch and Retreat, a unique residential living opportunity that provides housing for up to 77 young adults with autism. I was given a tour of the grounds and I was able to sit and chat with some great souls, like Sam. Sam is a 22-year-old with autism. He’s also an amazing pianist and has even composed his own music. Sam and I sat down in the front room of Erik's Ranch and Retreat and he gave me my own private concert! After the music ended, Sam and I talked about growing up with autism. Unlike me, Sam encountered bullying in high school. Sam said he was bullied in some form at least once a day. Because of other students not fully understanding and not being sensitive, it made Sam regret ever having autism. At one point, Sam thought to himself that they must really hate him too, because he couldn't understand how someone can hit someone else that much. Sam is an angel and has an amazing story to share. I'm lucky to have met him!
Out of the people I had the chance to meet with, I was able to relate on a personal level with only a couple of people. TJ is one of them. TJ has a deep passion for photography, drawing, and emergency vehicles. TJ was diagnosed with regressive autism at three years old and a year later began drawing artwork. When I walked into TJ's studio, I was in heaven. TJ's studio is filled with pictures of model police and fire vehicles, trains, and New York City. If you know me personally, you know that those are the keys to my heart. TJ has the most positive attitude towards life. Just being in his presence makes you forget about any troubles that you're going through and you contract his happiness. At the age of 31, TJ still encounters different forms of bullying. Another issue that TJ is faced with is being taken advantage of, something that I'm faced with as well. Having autism, you tend to base someone's character off of your first few interactions. When someone greets you in a pleasant mood and appears to have your best interests in mind, you're drawn to trust them. It happens more than I would like. No one is safe from being vulnerable. TJ is currently working on a permanent art installation inside of Erik's Ranch and Retreat. If you're ever in Minneapolis, you should give them a call and see it for yourself!
Madison also lives at Erik's Ranch and Retreat and, like me, struggles with personal relationships. Madison and I spoke about having difficulties understanding facial expressions and interpreting attitudes. Madison feels that one of her interpersonal skills are one of her weaknesses. Having autism sometimes removes the fun from meeting new people, hanging out with friends, and exploring new places. As she grew up, she began to learn more about her diagnosis and she also began to struggle with acceptance, especially with her being the only one in her family with autism. Madison's biggest struggle with grad school was not being able to create and maintain friendships. She was also bullied. I felt a strong personal connection with Madison because we experienced a lot of the same situations in our relationships.
This project was a personal struggle for myself. It was hard to sit across from these amazing people and hear about them being bullied, taken advantage of, and treated differently because of a title. I plan to continue this project, sharing 4 different stories at a time about different subjects. For more information on this project or to learn how you can help, contact me at firstname.lastname@example.org
I want to personally thank the following for their support and contributions to this project:
- Autism Speaks (DC, Chicago, Minneapolis chapters and the social media team)
- Passion Passport
- Erik's Ranch and Retreat
- Jackie Boyland
- Holly Garner
- Laurie Collins
- Danielle Elliot
- Pei Ketron
- Zack Glassman
- Jeffrey Gerson
- Michael George
- Jennifer Burnett
- James Jackson
- Victoria Pickering
- Sut Sae-Tia