Willie Rates at home,
B Y LEAH NASH
C O N T R IB U T IN G P H O T O J O U R N A L IS T
"T"Tr T h e n you ask 11-year-old Willie Rates
l / l / life with A sperger’s, he seem s
;
BY LEAH HASH
about
▼ ▼ 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’l like I’m
Portland unusual, or Los Angeles unusual.”
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.
He lives in Southeast Portland with his m other
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 th at sort of started
becoming A sperger’s arid then it became, ‘who
knows, he m ight just be a really unique guy.’”
After finding their way to the word A sperger’s^
both parents have mixed feelings about the
planned elimination of the diagnosis by the
American psychiatric industry (See accompanying
sidebar, this page). His m other 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
treatm ent because they don’t want to acknowledge
R e g io n a l A r ts &
C u ltu re C o u n c il
This is the first in a special series on five
individuals with Asperger’s Syndrome as told
through the lens of photographer Leah Nash.
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.
Photos on pages 7-9
their autism, that’s what I’m concerned about.”
“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
th e re ’s a lot of fear out there.”
Regardless of the term s, Tobi offers advice for
any parent dealing with a child who has been given
a diagnosis.
“The main thing is, it’s still your child. Nothing’s
changed. I t’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 m et one autistic person, you’ve m et
one autistic person,’ So our experience isn’t going
to be the same a? anyone else’s. These are great
kids — fun, interesting, wonderful, quirky,
creative...” she pauses and smiles, “...and
sometimes incredibly annoying, children!”
rom November 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.
Autism is the fastest growing disability in the U.S. with an economic
impact of more than $90 billion. The C enter 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 A sperger'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. /' <■ ..* .;
' | j | j I / -. z
j I I j 1 | ;1 ■ J g t f H g H I 1 | III1
■
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 A sperger's and autism and challenge themselves to
gain a deeper understanding of the people behind the label. Each week
we will profile a different person affected by Asperger’s Syndrome, This
series can be found in the next three editions of Street Roots, with two
additional people featured online with audio interviews and a
photographic slideshows at streetroots.wordpress.com. Next week,
online, we will feature the story and narrative of 22-year-old Anna Bauer,
a young woman with unusual interests.
Please join us as we give a voice to those that often have none.
Leah Nash is a documentary photographer based in Portland. More o f
her work can be found at www.LeahNash.com.
■Inside
Eileen Brady
Vendor profile:
Mind zone
Talking big
bridges, urban
renewal and job
creation in ker
bid for mayor
Frank Hodges
Portland filmmaker
looks at the
military's foray into
mental health
treatment in the field
Page 3
A hard worker with
a native tenacity
Page 6
Page 10