Visible Spectrum: Portraits from the World of Autism - PhMuseum

Visible Spectrum: Portraits from the World of Autism

Mary Berridge

2014 - Ongoing

Visible Spectrum is a book project with photographs of, and narratives by or about, people with autism. Excerpts from the narratives are included in this application.

I have been immersed in the world of autism since my son was diagnosed with Aspergers.

While autism can present herculean challenges for some, many people with the condition have remarkable strengths. Singular figures from history who were likely on the autism spectrum include Michelangelo, Newton, Mozart, Austen, Darwin, Turing, Einstein, Emily Dickinson and Warhol. Temple Grandin was only half joking when she said that without autism, humans would still be “standing around in a cave, chatting and socializing and not getting anything done.”

One thing these groundbreakers shared (on top of intense passion and focus), was seeing the world in a new way; they were the epitome of “out of the box thinkers.” A potential downside of seeing things differently from most people is confusion and anxiety resulting from not understanding others’ motivations (autism being partially a social communication disorder). The most popular website by and for the autism community is called wrongplanet.net.

Most people with autism are not geniuses. But each looks at the world in a unique way, often refreshing in its originality and lack of pretense. We need to better understand the autistic, not only to make the world a kinder place for them, but to broaden our own perspectives.

The project will widen and deepen our experience of autism, and by extension, our experience of difference. Above all, it will help dispel common misperceptions that reinforce stigmas and obscure the strengths of so many on the autism spectrum.

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  • Elise at a school where most of the students are on the autism spectrum. The classrooms are sparsely decorated in order to minimize visual distractions. During an art class Elise commented “Just because we see things differently, doesn’t mean we can’t see beauty.”

  • Strangers are frequently compelled to touch Newton’s luxurious red curls.This would make most kids nervous, but is especially anxiety provoking for someone with autism, who has difficulty reading facial expressions, body language and social cues. Newton often responds by becoming a chicken (chickens are a special interest of his), squawking and flapping his arms.

  • My son Graham and his cousin loved to wrestle. It‘s amazing to me that he looks so faraway and pensive. He says he was likely contemplating his next move.
    It is a myth that people with autism don’t like to interact with others. Most enjoy interacting with people they know well.

  • From an early age, Mia has been comforted by the feel of rubber and fur. She calls this her “life suit”, which she wears to protect her “when life gets to be too much”. Her other great solace is what she calls “mining”. She spends her ten minute breaks at school digging a small hole, which she then fills back in. Swinging the heavy mattock gives her sensory and muscular input that grounds and calms her. In addition to liking technology and golf, she wants to be a model and a scientist- the kind that wears a hazmat suit.

  • Lia's mother: "Lia is full of love and curiosity. She wants to be a Pre-K teacher when she grows up and all of her screen time is spent watching videos of curriculum in early childhood development.

    As she frequently points out, her biggest struggle with autism is ‘not having any friends.’ This breaks my heart.The biggest myth about autism is that people on the spectrum prefer to be alone and don’t have emotions. In reality, they are so full of emotions and empathy they are often overwhelmed and shut down.

    We have so far to go in understanding autism, but the first step is visibility. When Mary was taking photos, we asked Lia ‘what is the best part of having autism?’ Her immediate response, ‘I get to have my picture taken today.’


    V. Satir (psychologist): “I believe the greatest gift I can conceive of having from anyone is to be seen by them, heard by them, to be understood and touched by them. The greatest gift I can give is to see, hear, understand and to touch another person. When this is done I feel contact has been made.“

  • After graduating from college, Will wrote a letter thanking his friends and family for their support: “I am dumbfounded by what that encouragement produced- and not just academically. I end my educational experience knowing I did one thing right:
    I made friends. If you had told me that I would have friends willing to speak to me 8,000 miles away at 3 in the morning, or that I’d count extremely intelligent men and women of every race, color and nationality from every corner of the world as friends I would have never believed you. This is stunning to me. And I can say; if I died tomorrow, I would hope people would know that that is my proudest accomplishment.”
    Will joined the Peace Corps and is moving to Armenia where he will teach English.
    His ultimate goal is to work with immigrants because, he says, “being a stranger in a strange land is a feeling I relate to very well.”

  • At the end of the list of things he wanted me to know about him, Chandler wrote: “NOTE: singing = peace.” His mother explained that everyone sang to him (rather than spoke) for the first several years of his life because he was non verbal and they were told that singsong helped children learn language. He is now extremely verbal and loves to sing.
    He asked if I wanted him to pose like Mona Lisa.

  • Adam’s mother: “Adam stretches my reality in ways I wouldn't have thought possible, from 20 minutes to stop and watch the creek running over rocks, to what seems like an hour to drink at a water fountain. I've long since stopped being embarrassed about dance parties in the frozen food section of Kroger, (they are now one of my favorite things about him).

    Adam received a blessing last fall from a self-proclaimed Shaman. He told me the blessing was to protect 'spirit' from wicked people and to broadcast his joy to the other spirits. So, when Adam is verbalizing in public, I chuckle to myself that he's broadcasting his joy to others. On with the dance party.”

  • This is Graham with his sister on vacation.Travel is often difficult for people with autism due to anxiety caused by unfamiliar places and sensory overload. Graham’s ability to travel is improving with age, but here he seemed overwhelmed by the height and scale of the vista. People with autism don’t always enjoy things neurotypical people perceive as pleasurable experiences.

  • Rico's Mother: “It has become clear that his fear of animals in general (dogs most profoundly) doesn’t apply when he is ‘in charge.’ When a horse is loose in a paddock, or approaching him when he’s on foot, he is terrified. But once in the saddle, he is lord of all he surveys. The motion of the horse, the proprioceptive and vestibular inputs are almost magical. He generally stops his scripting, listens well, and his motor planning is much better. He feels better afterwards – even if it was cold and damp or hot and humid. Even when he has fallen off the rare few times, he has always wanted to resume. As we move toward having our own farm, a horse or two is VERY much in the plans. Rico will pick him out and will continue to grow and thrive, no doubt about it.”

  • I met Jeff at an Autism Employment Summit, where he was a panelist. Jeff is a successfully employed adult, no mean feat for someone with autism. Currently 85% of adults with ASD are unemployed even though 60% have average or above average cognitive abilities. Technology companies in particular are beginning to recognize the value of hiring people with autism, many of whom have strong technology skills. The global software giant SAP set a goal of having 1% of their workforce be comprised of people on the autism spectrum by the year 2020.
    Jeff was a welcome addition to the panel, not only because of his experience, but also because of his comedic timing. When someone asked how employers could find people on the spectrum, he suggested they go to a Star Trek convention and look for those with the the most elaborate costumes.
    Jeff works in healthcare technology and lives with his two hairless cats. Pretty much his entire living room was was packed with musical equipment and cat jungle gyms.

  • I met Alex and his wife Santana at their public talk “Autism, Dating and Marriage.”
    As an educator, Santana was familiar with autism and understood Alex’s quirks. That understanding, as well as the ability on both their parts to compromise, has led to a strong and happy marriage. Here’s an excerpt from their wedding website description of the proposal (at a restaurant): “The mood was light and airy, the conversation intriguing as we discussed the flaws in time travel, upcoming elections, and plans to travel soon. Dinner was delicious; still having room we decided to indulge in dessert. When it arrived my first thought was ‘I didn't order this.’ I took a moment eyeing the midnight colored box, the edges so soft it barely looked real, until I touched it. As I looked up catching Alex's eye the room, just barely at a hush suddenly seemed to explode with applause.”

  • Here is Graham at the Louvre. He preferred the Hotel des Invalides, as military history is one of his special interests. In kindergarten he could cite what happened in every battle of the Revolutionary War, including how many soldiers were killed and wounded per battle on each side.
    At 13, he was considered a world expert on Game of Thrones (on the question and answer website Quora). This was remarkable considering he didn’t watch the show or read the books. He preferred to read about them. At 15 he had over 1.1 million views of his Quora answers on a variety of topics.

  • This is Josh with his caregiver Sarah.
    Josh’s dad: “Josh is our little hero because he has been through so much and has had to battle seizures almost every day of his life, but his sweetness and determination are still as strong as they have ever been.
    Autism is really just the word they assign to so many of these kids whose brains have to work differently to process, and the most important thing we have learned is don’t give up trying to communicate and connect in a way that works for your kid. They are in there. Even if you are not able to “fix” them, that doesn’t mean deep connection is not possible. It’s figuring out how. Josh uses the largest Ipad they make with a picture board to tell us what he wants.
    When Josh was 1 year old and 6 months into his seizure disorder, our pediatrician told us to prepare for the worst, as he would likely not walk and would have to be tube fed. We chose not the believe that, and 15 years later he’s a strapping redhead that is strong and eats like a horse! It’s been a tough journey for sure, but there is also so much joy and love that comes along the way.”

  • This is Abbey (on the left) with her caregiver Blair.
    Abbey’s mother: “Abbey is funny and makes us laugh often. She comprehends everything you are telling her. She just struggles talking back and carrying a conversation. She is beautiful and happy.
    Blair has been Abbey's CAP worker for 2 years. They have an amazing relationship. Blair has become family to us! She has shown Abbey why it's so important for a teenage girl to have a friend. Every Tuesday they do a mani/pedi at our kitchen table. This is huge!!! Abbey use to fight us tooth and nail to clip her nails. She has also taught her to love shopping- clothes shopping use to be another nightmare. They have even ventured into highlighting Abbey's hair. It's so wonderful to watch Abbey experience teenage girl things. She can't wait for the days that Blair comes to work!"

  • Twins Evan and Eric spent their first dance mingling somewhat on the outskirts of the crowd, with occasional pit stops in the fireplace. Their mother, who was thrilled that they chose to go to a dance with other teens, wrote “I am beyond proud that my boys know how to calm themselves. I hope that next time, they choose to dance. But I accept this for now, as this is where they are. I choose to meet them there. And to slowly, carefully, with as much love as I can muster, draw them out, bit by bit, until they can meet me at least halfway.”

  • Sadie’s mother: “If I say to her in the morning, ‘hurry up, we've got to get to school,’ she will yell ‘panic!’ and start running around and ultimately it will take more time to calm her down. You would think after living with this child for 13 years I would not say things like ‘hurry up,’ but raising an autistic child does not come naturally to me and I am disappointed with myself that I am not better at it.
    For me, one of the gifts of Sadie's autism is that at 13 she still loves her mom. We go on long walks where Sadie chatters away telling me about some video game or movie she read about. Sometimes I say ‘yes, you've already told me about this a couple of times’ but mostly I just enjoy the fact that when we are together she is happy and confident. I find her to be a charming unique individual who has a good heart and I enjoy her company. I will probably get to enjoy her company for longer than a typical teen/young adult and for that I am grateful.”

  • One day I came across Graham’s Quora answer to the following question: “What would the effect of an autism cure be on current people with autism?”
    “I would die. Then someone else would wake up in my body. I would no longer hold my interests. I would lose almost all my friends. Without what made me, me, I would be a shadow of what I was. Ironically, I would be almost disabled, the very thing they would be trying to ‘cure.’

  • This is Tristan playing with his twin sister.
    Tristan’s mother: “Tristan is sweet, goofy and oh so chatty. He especially likes to tell ‘mashup’ stories he creates using characters from books he loves and topics he's learning about. His current favorite uses characters from two different books and involves fighting a zombie apocalypse using WWI vintage weapons.
    Despite his sweet nature, Tristan frequently had behavioral problems at school that were exacerbated by inadequately trained staff. Instead of viewing his behaviors as symptoms of anxiety and supporting him accordingly, he was disciplined in a way that only compounded his frustrations and reinforced his behaviors. We ultimately had to take him out of our local public school and send him to a nonprofit private school far outside our district.
    While public schools are legally mandated to offer all students with disabilities a free, appropriate and individualized education, they often lack the resources and training to do so. Schools that work well with students with autism (whether public or private) can be hard to find, and the cost of private school is prohibitive for most families. It is especially frustrating when schools fail to understand students with autism because many of those students- if successfully engaged- can be such curious and passionate learners.“

  • Remington is a college graduate and trainee in the University of North Carolina Developmental Disabilities Program for Leadership in Self-advocacy. There is growing recognition that many people with autism can and should be in positions of leadership in the field of autism and elsewhere. He is also a musician who says that autism has augmented his “ability to be creative and stay focussed”.


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