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

have been immersed in the world of autism since my son was diagnosed with Asperger syndrome. Graham had many of the traits of autism from when he was a baby: speech and motor skill delays, sensory sensitivities, anxiety in big social gatherings and more. He had seen professionals for evaluations, but did not get a diagnosis until he was seven.

This was a kid who had meltdowns over the sound of a blowdryer one floor up, the feel of a new shirt and the sight of a slice of cherry pie. Our lowest point was when he started refusing to enter homes he hadn’t been in before, or getting so upset at entering a restaurant that he would throw up. At least now I can sort of laugh when I think of the strangers in the grocery store who would approach him, then a cherubic toddler, and ask what his name was. “Mr Stupid Nobody,” was his reply.

Like many parents, I was initially frightened by the diagnosis. それで, the more I learned about autism, the more I realised that many things I loved about my son were related to it. He is bright, 奇妙な, passionate and sensitive. His unusual and erudite use of language has delighted us since he was a toddler. On the way home from a Star Trek しかし、ほとんどの部分で私は自分の人生に戻りました, his cousin told the then 12-year-old Graham that he spoke like Spock and he replied: “I believe I have a higher register.” Recently, he was helping in the kitchen and asked: “Mom, is there a good place for this bowl, because in my experience the counter space during dinner preparation is dynamic and mercurial.”

Seven is not an unusual age to get a diagnosis, yet we could have made his and our lives so much better if we had known sooner. Knowledge about autism is not that widespread. This lack of understanding compounds misinformation and stigma. We need to better understand autistic people, not only to make the world a kinder place for them, but to broaden our own perspectives.

I started photographing other children and families affected by autism in 2014 because the autistic people I knew were so different from stereotypes. A common statement in the autism world is: “If you’ve met one autistic person, you’ve met one autistic person.”

This project depicts a range of individuals who inhabit their own unique place on the spectrum and in the world. Their autism doesn’t define them, but many would say it is integral to who they are. Many of the portraits were taken in quiet, contemplative moments. Sometimes the subjects are interacting with a person, animal or object, and sometimes they seem absorbed in their thoughts. Often what catches their attention is a detail that would be overlooked by others.

I then invited the subjects or their parents to write anything they wished people to know about them or autism. 一緒に, the entries describe many facets of their subjects: how they are both ordinary and extraordinary, their strengths and challenges, and how they adapt to the neurotypical world. Because many are written by parents, a large number touch on the transformative experience of being a parent of a child with a disability. I will say, and I think many of these parents would agree, that it has helped us find meaning in the world that we would not otherwise have found.

Graham is now 18. He drives a car and is applying to colleges. While he sometimes gets annoyed when he thinks I am talking about autism too much, he recently wrote an essay about how his autism has made him an exceptionally engaged learner.

I often think about a quote from Graham when he was 13. He had come across a post online asking how a “cure” would affect autistic people.

彼は返事をした: “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. 皮肉なことに, I would be almost disabled, the very thing they would be trying to ‘cure’.”

It is amazing to me that Graham, pictured here with his cousin, looks so disconnected and pensive in the middle of some very tumultuous wrestling. It was fleeting, although it doesn’t look that way. He says it was likely he was contemplating his next move.

Strangers frequently feel compelled to touch Newton’s luxuriant red curls. This would make a lot of kids nervous, but it’s especially anxiety-provoking for an autistic person, 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. This can have the desired effect of getting rid of unfamiliar people quickly.

Like many level 1 autistic adults of his generation, Jeff was diagnosed in middle age. “I was going through a difficult time at work,」と彼は言います, “and was seeking help in a number of ways. 何とかして, everything pointed at Asperger syndrome. While I did not learn much new about myself, it did explain a lot to me about neurotypical thinking and why so many people behave the way they do.”

“When I look at him,” says Santana of her husband Alex, pictured with her above, “I see so many things. I see someone who’s kind, gentle and remarkably intelligent. I also see someone who stirs his veggies around, who only likes the grey non-itchy, non-spidery sweaters, and who sees me and shares in the same love and passion I have for him every day.”

For Alex, “Santana is an amazing person and a pillar of my life. She helps me feel like I am able to live a true existence and not merely a shadow. Love is an important force for connecting people together; it can be given away and shared but does not diminish with the sharing.”

“He is sweet, goofy and oh-so-chatty,” his mother says of Tristan, pictured here with his twin sister. “He is a passionate learner and loves to discuss what he’s reading or watching. He is especially interested in telling ‘mashup’ stories he creates using characters from books he loves and topics he’s learning about.”

Mia is a charming teen who “has a big heart and brings joy to all who know her”, her mother says. She was adopted as a baby from China and underwent four years of weekly developmental and physical therapy before starting kindergarten. She is comforted by the feel of rubber and likes to wear what she calls her “life suit” when it seems as if “life is too much”. Mia is very open about being on the autism spectrum and someday wants to teach others about her journey.

“Joshua loves playing outside, blowing bubbles and feeding the animals and birds,” says his mother Danyale, pictured here with him. “He insisted that we get a bird feeder because he wanted to make sure the birds had their breakfast, lunch and dinner every day. I don’t really know where this autism journey will lead us, but I certainly love my tour guide. What I admire most about Joshua is his ability to see the good in everyone and everything, and that he always tries his best.”

The first time Natalia saw Goofy, her parents say, was at Disney World, where she was scared of him. Eventually she came to love him and would try to carry about 10 Goofy dolls with her everywhere she went. To her parents, Goofy was her joy, her comfort for anxiety and even a fear she had overcome.

In kindergarten, Graham could cite in great detail what happened in scores of battles of the American revolutionary war, including precisely how many soldiers were killed and wounded in each. Then he was interested in the second world war, then military issues in general. で 13, he was considered a world expert on Game of Thrones, frequently posting about the book and television series on the Q&A website Quora. で 15, he had 1.1 million views of his answers on a range of subjects.

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