‘Without what made me “me”, I’d be a shadow of myself’ – portraits of life on the autism spectrum

Since my son was diagnosed as Asperger syndrome, I have been deeply involved in the autism world. Graham displayed many characteristics of autism, including speech and motor skills delays, sensory sensitivities and anxiety at large social events. Although he had been to professionals for evaluations, he did not receive a diagnosis until he turned seven.
One floor above him, the sound of a blowdryer and the feeling of a fresh shirt or a piece of cherry pie was enough to cause meltdowns. The lowest point for us was when he refused to go into homes he had never been to before or became so upset about entering restaurants that he would throw up. Now, I can laugh at the thought of strangers walking into the grocery store and asking him his name. His reply was "Mr. Stupid Nobody."

As many parents, I was initially scared by the diagnosis. As I began to learn more about autism, I realized that many of the things I love about my son were connected to it. He is intelligent, curious, passionate, and sensitive. Since he was a child, his unusual and intelligent use of language has been a delight to us. Graham, then 12, was returning from watching Star Trek movies. His cousin said to him that he looked like Spock. He also asked if there was a place for the bowl.

Although seven is not unusual for a diagnosis to be made, it would have been a great time to make our lives easier. Autism knowledge isn't widely available. This ignorance leads to stigmatization and misinformation. It is important to understand autistic people to not only make the world a better place but also to expand our perspectives.

They are able to find their place in the spectrum and the world. They are not defined by their autism, but it is a part of who they are.

Because the autistic individuals I knew were so unique, I began photographing families and children affected by autism in 2014. One common saying in the autism community is "If you have met one autistic individual, you've probably met one autistic human."

This project shows a variety of individuals who each have their own place in the spectrum and the world. Although autism does not define them, many people would argue that it is an integral part of who they are. Many portraits were taken in contemplative, quiet moments. Sometimes subjects interact with an animal, person or object. Other times they seem to be absorbed in their thoughts. Sometimes, what they notice is something that others would miss.

Then, I asked the subjects and their parents to share any information they wanted to share about autism. The entries cover many aspects of the subjects, including how they are ordinary and extraordinary, how they deal with challenges and how they adapt to neurotypical life. Many of the entries are written by parents and focus on the transformative experience that comes with being a parent of a child living with a disability. It has allowed us to find meaning in this world, as I believe many parents will agree.

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Graham is now 18. Graham is now 18 years old. He owns a car, and is applying for college. He sometimes gets annoyed that I talk about autism too often, but he wrote an essay recently about how autism has made him a highly engaged learner.

Graham's 13-year-old quote is something I think of often. Graham had found a post on the internet asking about how an "a cure" would affect autistic persons.

He said, "I would die." Then, someone else would awaken in my body. I would lose all my interests. My friends would all be gone. I would not be the same person without what made me "me". Ironically, I would almost be disabled from the very thing they'd be trying to "cure".

Graham, 2015

Graham is pictured here in a picture with his cousin. It's amazing that he looks so detached and contemplative during some very turbulent wrestling. Although it appears that it was brief, it is not apparent. He said it was possible that he was thinking about his next move.

Newton, 2015

Strangers often feel the need to touch Newton's rich red curls. While this would be a common reaction for children, it can also make autistic people anxious. Because they have difficulty understanding facial expressions, body language, and social cues, this can cause anxiety. Newton will often react by mimicking a chicken, squawking and flapping both his arms. This can be a great way to quickly get rid of people you don't know.

Jeff, 2018

Jeff, like many autistic adults at level 1, was diagnosed at middle age. He says that he was experiencing a difficult time at work and was looking for help in a variety of ways. Everything pointed to Asperger syndrome. Although I didn't learn anything new about myself, it was a great way to understand neurotypical thinking and the reasons why people behave as they do.

Alex, 2019

Santana, who is pictured above with Alex, says that when she looks at her husband, she sees so many things. I see someone kind, gentle, and remarkably intelligent. I also see someone who loves to stir his vegetables, who likes grey sweaters that are non-itchy and non-spidery, and who shares the same passion and love I have for him every single day."

Alex says that Santana is an incredible person and a pillar in his life. She makes me feel that I can live a full life and not just a shadow of it. It is a powerful force that connects people; it can be shared and given away, but it does not diminish.

Tristan, 2015

His mother describes Tristan as "sweet, goofy, and oh so chatty." He is pictured here with his twin brother. He loves to talk about what he is reading and watching. He loves to tell'mashup stories' using characters from books that he enjoys and topics that he is learning about.

Mia, 2016

Mia is a sweet teen who, according to her mother, "has a big heart" and "brings joy to all those who know her". Mia was adopted from China as a baby and received four years of developmental and physical therapy before she started kindergarten. When life seems overwhelming, Mia loves the feeling of rubber. Mia is open about being autistic and wants to share her story with others.

Joshua, 2018

His mother Danyale is pictured here with Joshua. He insisted on getting a bird feeder as he wanted to ensure that the birds got their breakfast, lunch, and dinner every day. Although I don't know where this journey will take us, I love my tour guide. Joshua's ability to see the positive in everything and everyone is what I admire most. He also tries his very best.

Natalia, 2015

According to her parents, Natalia first saw Goofy at Disney World. She was afraid of him. She eventually fell in love with him and would carry around 10 Goofy dolls everywhere she went. Goofy was her joy and her refuge from anxiety.

Graham, 2018

Graham was able to cite the details of numerous battles in the American revolution war. He even knew exactly how many soldiers died and were wounded. Graham was just five years old when he made his first speech. He became interested in military issues and the second world war. He was 13 years old and considered to be a world expert in Game of Thrones. He posted frequently about the series on Quora. He had over 1.1 million views on his answers to a variety of topics at the age of 15.