Catching the Snowflake: A photo story of Asperger’s Syndrome (Part one)

by Leah Nash

When you ask 11-year-old Willie Rates about life with Asperger’s, he seems comfortable with his place in the world, both figuratively and literally.

“Well, you’re indeed not usual, which I’m perfectly OK with,” he tells me. “It’s like I’m Portland unusual, or Los Angeles unusual.”

It was more than two years ago that Willie first donned his now trademark Nemes, a striped headcloth fashioned after the pharaohs in ancient Egypt. It is a reminder of his obsession with Ancient Egypt, though now Willie says he wears it more out of habit than anything else.

Willie working on a movie set.

A lover of ancient Egypt and Rome, dinosaurs and Playmobil figures, Willie will tell you that first and foremost he is a filmmaker, with 123 movies to his credit.

An avid stop motion filmmaker, Willie has more than 120 movies through his production company, KhAnubis Productions, which he promotes through the blog khanubis.blogspot.com and his You Tube channel. His film topics usually center on ancient Rome and Egypt, with Playmobil figures taking the starring roles. His latest piece, "Dr. Tyrannus' Revenge," is complete with German subtitles.

He lives in Southeast Portland with his mother Tobi, father Dale, and his 7-year-old brother Jacob, who is also on the autism spectrum. First tested for autism at age 4, Willie’s path to a diagnosis hasn’t been a straightforward one, “First we were told, ‘we don’t know what, but there is something going on there,’” says Dale, a musician. “And that turned into autism and that sort of started becoming Asperger’s and then it became, ‘who knows, he might just be a really unique guy.’”

Willie's family, left to right, Willie, Dale, Tobi, and Jacob outside their Portland home.

After finding their way to the word Asperger’s, both parents have mixed feelings about the planned elimination of the diagnosis by the American psychiatric industry. His mother Tobi is a self-described “recovering” attorney who was recently named the executive director of the Autism Society of Oregon.

“My reaction is that it makes sense clinically, because right now the definition is so convoluted and ridiculous,” Tobi says. “My concern is that it is a lot easier to hear a word like Asperger’s than autism, and that if you have people who resist getting a diagnosis and getting support and treatment because they don’t want to acknowledge their autism, that’s what I’m concerned about.”

During math class, Willie's notebook fills up with drawings rather than equations. In general, his relationship to school is uneven, with him excelling in topics that fascinate him, like herpetology, the study and classification of reptiles and amphibians. Like many people with Asperger's, Willie can spend hours fixated on very spcific topics and interests, which is why many with the diagnosis make good lawyers or computer programmers.

"In comparision to my last school, it's a paradise," says Willie. You can customize your own schedule." In 2010, the Oregon Department of Education reported a 6 percent increase in the number of children with autism from the previous year with 7,300 children.

“It’s just the way a word (autistic) can be taken,” says Dale. “Language all too often conjures up images that may or may not really be true and so there’s a lot of fear out there.”

Regardless of the terms, Tobi offers advice for any parent dealing with a child who has been given a diagnosis.

Hugs are a regular part of the day in the Rates household

“The main thing is, it’s still your child. Nothing’s changed. It’s a challenge to deal with, but the main thing about any kid on the autism spectrum, or any person, really, is that everyone’s different. It manifests differently. The saying is, and it’s really true, ‘If you’ve met one autistic person, you’ve met one autistic person.’ So our experience isn’t going to be the same as anyone else’s. These are great kids — fun, interesting, wonderful, quirky, creative…”  she pauses and smiles, “…and sometimes incredibly annoying, children!”

April is Autism Awareness Month. Willie attends the 9th Annual Autism Walk-A-Thon at Oaks Ridge Park which draws record numbers each year. Willie's father Dale marvels at the the changes time has brought. "In my day, in the 60s, there was one description or two descriptions, really: retarded and normal. Now, it's not a shame. It's everywhere. We're all a little weird everywhere you look. Everyone's got a quirk, or a strange little thing. And that's OK. That's what makes us unique. Otherwise we're just robots and rocks."

Visit other stories in this series.

Street Roots Asperger’s Syndrome Series:

From Nov. 18th until December 23rd, Street Roots will run a weekly photographic series documenting the lives of five people with Asperger’s Syndrome, a form of high-functioning autism.

Catching the Snowflake is the first in a special series on five individuals with Asperger’s Syndrome as told through the lens of photographer Leah Nash. See part two, “The Comfort of Acceptance.”

Autism is the fastest growing disability in the U.S. with an economic impact of more than $90 billion. The Center for Disease Control reports that now one in 110 children are being classified with autism spectrum disorders, compared to one in 10,000 in the 1970s, and according to the Autism Society of Oregon, our state has one of the highest rates of autistic diagnosis in the country.

First documented in 1944, many with Asperger´s Syndrome can be quite gifted, but are often socially awkward and unable to make friends. Frequently misunderstood, those affected live in a world of missed social cues and difficult exchanges. Called “little professors” by their namesake, Hans Asperger, who noted their talent of acquiring expertise in specific topics. Those with the syndrome usually want to fit in and have interactions; they simply don’t know how.

The objective of this series is to explore the diversity and complexity that exists across this spectrum, for it is often said that people with autism are like snowflakes — no two alike. This work is especially relevant given controversial revisions proposing to do away with the Asperger’s diagnosis altogether in the Diagnostic and Statistical Manual of Mental Disorders (DSM), the diagnostic encyclopedia of American psychiatry.

As history changes, a record must be kept, these stories must be told. Through the support of Street Roots and the Regional Arts & Culture Council, the goal of this series is to encourage viewers to question their perceptions of both Asperger´s and autism and challenge themselves to gain a deeper understanding of the people behind the label.

Please join us as we give a voice to those that often have none.

Leah Nash is a documentary photographer based in Portland. More of her work can be found at www.LeahNash.com.

The project was made possible in partnership with the Regional Arts & Culture Council in an effort to chronicle the diversity of this complex diagnosis of autism, illustrating the challenges and beauty of an unconventional life.

9 responses to “Catching the Snowflake: A photo story of Asperger’s Syndrome (Part one)

  1. Very moving photography, Ms. Nash.

  2. Really enjoyed this. His father, Dale, is the brother of a childhood friend, Dawne. My son, Conor, also has AS. It’s always interesting seeing how families cope. Ann Boone

  3. I love the picture of Willie sleeping, it reminds me that when all is said and done at the end of the day, they are simply are little babies that teach us acceptances and the ability to embrace our individuality and uniqueness, a lesson we all benefit in mastering. Thank you Tobi and Dale for sharing this reminder with us all. Love you, the Bailey family…

  4. Of course they want to eliminate the AS diagnosis. Then they can eliminate the services. All about $$.

  5. Pingback: Pretending to be normal: A photo story of Asperger’s Syndrome | For those who can’t afford free speech

  6. In this case, the change in the DSM makes very good sense. The four present categories – autism, high functioning autism, Asperger’s syndrome and pervasive developmental disorder, not otherwise specified – simply describe points on a spectrum, which is itself one end of the spectrum of humanity. The relevant diagnostic criterion is experiencing difficulty coping with normative society because of a characteristic set of traits that some have dubbed ‘intense world syndrome.’ The specific manifestation of these traits varies widely – as the article states, if you’ve met one person on the spectrum, you’ve met one person on the spectrum.

  7. really recommend that anyone wanting to know more about Aspergers, check out this group of videos and prose…very well written …….

  8. Pingback: The man I am: A photo story of Asperger’s Syndrome | For those who can’t afford free speech

  9. Pingback: Special Report: Photo stories of Asperger’s Syndrome | For those who can’t afford free speech

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