Monday the 21st had come and it was the day of
the July meeting of the Autistic Self-Advocacy Network of Kansas City. Before I went, my mom told me the directions
to the Plaza Library where it was taking place. I got there safely, remembering to call my mom to tell her when I did,
and waited outside the room we were meeting at until it started. Soon a tall woman with dark hair arrived and
stood outside the room with me, and then a young man, slightly shorter than me
with straw-colored hair. We went in and
sat down, and then a young woman with blonde hair and glasses arrived, followed
by another young man. Soon, our director
Teigan Hockman arrived, followed by a man with dark hair and thick-framed
glasses, the former with completely dark hair save for a green ponytail in the
back. Then another young woman with
shoulder-length dark hair arrived. Then
another man with thin blond hair arrived.
At
last, when we decided everyone who was coming was here, Teigan suggested we
introduce ourselves. She began, saying
she went to Penn Valley Community College, and started the Kansas City branch
of the Autistic Self-Advocacy Network. Then the man next to her introduced himself as Marshall Edwards, the
husband of Teigan and self-diagnosed as having Asperger syndrome. Then the young man I had seen outside in the
hall introduced himself as Skyler and twenty-five years old, with Asperger
syndrome and ADHD. The woman I saw in
the hall introduced herself as Pam, saying she was self-diagnosed as having
Asperger syndrome. The dark-haired woman
introduced herself as Wendy and said she was a student in the organization
Disableds in Higher Education. Finally, I
introduced myself saying I was Ben Edwards, and I am twenty-four years with
autism, I go to the University of Central Missouri where I run a student group
for students with autism, and I have two autism-related blogs.
“Wow!”
said Teigan. “Well, we know you’re busy
when you’re at school, but we’ve been trying to get you to come here for a
while.”
The
blonde women introduced herself as an artist with autism, and the other man,
her boyfriend, introduced himself. Then
the last man introduced himself as a man with Asperger syndrome who was a board
member of the Autism Society Heartland. Soon we got our on-line Facebook chat going.
“Oh,
good, Elizabeth’s on,” Teigan said.
Finally, our meeting started, and Teigan began, “Well, for this meeting we have three
main things on our agenda, but first I want to tell anyone who’s unfamiliar
about our group. We are a response to
groups we who we feel do not really represent autism, such as Autism
Speaks. They recently made a documentary
called Sounding the Alarm, which had
so many hateful messages about autistics, saying they’d rather have no children
than an autistic child, or that having an autistic child is a living hell, or
calling this new wave of autism an
autism tsunami.”
The
others stirred.
“That sounds
like a roller coaster ride,” said the ASH board member. “Come ride the Autism Tsunami.”
“And
the group only donates four percent of its money to services for people with
autism,” said Teigan.
“Actually, this year it was only three,” said the board member.”
“Three,
four, what’s the difference to them,” said Teigan.
“Anyway,”
she continued, “We are a non-judgmental group, so if you want to walk around,
stand up, or flap your hands, we accept that.
And normally we don’t clap our hands, because a lot of autistic people
find that hard to deal with. Instead, we
do this.”
She raised her hands in the air
and shook them, very much like the pictures I had seen associate with a
publication for stories, writings, and articles by people with autism, the Hands Loud Project, by our main chapter.
“So,” said Teigan, “Our first order of business is that we want
to show a screening of a documentary called Citizen
Autistic, and it deals with the autistic self-advocacy movement, but we
need to raise the money to show it. I
was thinking we could have a silent auction. I could sell some of my art and Marshall was planning on selling some of
his comic books that he wrote.”
“I
have some art that I could sell,” said Wendy.
“I
have some art,” said the woman on my left.
“I
have these coasters that our made from receipts folded up and taped and glued
together that I could make,” I said.
“Oh, like that paper art,” Teigan asked.
“Yes.”
“Ok. Are there any other ideas beside a silent
auction?”
“I
could give some dance lessons,” said Wendy.
“We
could show movies about autism,” said the blonde woman. “There’s Loving
Lampposts.”
“Yeah,
and there’s Wretches and Jabblers,”
said Teigan.
“So,”
Teigan went on after we had finished discussing ways to raise money, “Next, I wanted to go around and hear
everyone’s thoughts on the group, because I feel that why I started this
chapter, this isn’t all about me. I want
to hear from all of you guys.”
That
was exactly what I thought all the years as I had founded two student
organizations for students with autism. Marshall,
Skyler, Pam, and Wendy all said their thoughts as we went around. They tended to talk about how they were
self-diagnosed and how they thought it was important what the ASAN was
doing. Finally, we got to me, and I said,
“Well, have any of you heard of the Facebook page Boycott Autism Speaks?” I
asked.
Teigan
nodded.
“Well,
they’re now taking art, photos, poetry, and pictures of people holding up signs
in protest of Autism Speaks and wanted to let people know that in case they
wanted to send any. I’ve also thought
that a good way to protest Autism Speaks would be to put duct tape over our
mouths with the Autism Speaks puzzle piece, to symbolize how Autism Speaks
silences people.”
“I
like that idea,” said Teigan. “I’ll write that down, but I just thought I’d let
everyone know that while that is good, we are not one of those organizations
that chains ourselves to posts, although you can do that if you want.”
“I
also have been writing a letter to one of their sponsors the sorority Alpha Xi
Delta, asking them to revoke their sponsorship of Autism Speaks. I think they
probably don’t have autistic children like the owner of Home Depot and they may
be more willing to listen to us, and I thought if anyone wanted to, they could
take a look at the letter when I’m finished and give their input.”
“We’ve
tried writing to them before and they keep writing back to us saying, 'We think
they’re doing great.' But the more we
write to them, the more we chip away at their convictions.”
“It’s
happened before when we got Chili’s to drop their sponsorship for the National
Autism Association,” said the Autism Society Heartland board member.
“We
have a message from Elizabeth,” said Teigan. “She asks, 'What else is our group about? Aren’t we about more than simply criticizing
Autism Speaks?’”
“Well,”
I said, “While we do criticize Autism
Speaks, that’s only part of something bigger. Our main goal is to create greater inclusion and acceptance of autistic
people.”
“That’s
right,” said Teigan. “I’m going to write
that down.”
At
last, we got to the business of creating our website. “If anyone has anything to send us, like if
they know of a sponsor of Autism Speaks, so we can let people know, or
autism-friendly resources or professionals who can help many of our member s
get diagnosed, we’d like that, and professionals like it to because it’s like a
recommendation for them.”
“Perhaps
we could have something where we autistics tell our stories?” said the blonde
woman.
“Yeah,
like The Autism Monologues.” said Teigan.
As
we left, the blonde woman said to me, “You took the words right out of my mouth
when you said that we are about finding greater acceptance and inclusion for
autistic people.
I
got home and updated my Facebook status saying I had my first Autistic
Self-Advocacy Network meeting and that it went great. I told my granddad about it, and he was very
excited. I unwound by working on my
travel plans to Germany. The next
morning, I found out my recent status got fifteen likes. That day I made five more coasters from
receipts. I took a short break for
breakfast and decided I could help my dream of being a translator by reading
the introductions and gratitude of other translators to know I could go to for
help. Then I spread mulch for Mom,
swimming in the pool halfway through the work and afterwards. Cate got there that day to, and said to me,
“Oh, Ben I have something for you.”
She reached into her suitcase
and gave me a magazine on Buddhist traditions of India and Tibet.
“I have a subscription to these
as a member of the museum in New York and I get them every month.”
“Well, thank you,” I said.
Then I went to Starbuck’s. I got back, after which Mom said I did a
really great job on the mulch, and then I started making some more dream
catchers. After dinner I talked to Dad,
who was excited about the news of ASAN. I also decided to sell the dream catchers, for ten dollars apiece, the
coasters for twenty-five dollars, both Mom’s idea, and the friendship bracelets
for $2.50. Then I watched Wilfred with
Mom, Dave, and Cate.
The next day I went to
Winstead’s and then Barnes and Noble, where I got a Lonely Planet book in
Central Asia, before going to the Pathless Land. Before we did our meditation, I told Ben
about my receipt coasters and dream catchers and asked him if it would be
alright if I told the group about them before we started the discussion group,
and he said it would. The next morning
at my art class, I told Donna about the silent auction, and she said she would
be happy to donate one of her paintings to it.
“Really?!”
“Yes. It’s a good cause.”
I got home and met with Mardy at
Starbuck’s, and he agreed to bring a TV and a fridge (since his was bigger) for
our room together next year, and I would bring the microwave. We got back and watched TV before he had to
go home to great some family members coming into town. The next morning, while passing the time
before I went to the Camp Encourage panel for adults with autism, reading my
Lonely Planet Turkey book. I read a part
on Turkey’s beloved founder, statesman, and revolutionary Ataturk (meaning
“Father Turk”). Towards the end of the
boxed text, I read after years of being a military man and reformer, he died a
young age at age 57. Then a car pulled
up to my driveway, which turned out to be Michelle Hass, there to give me a
ride. We met and I thanked her for the
ride, and we passed the time talking and sharing experiences and stories of
ours. I got to the camp and met the
other person on the panel, a blonde young man, named Eric. This time, Kelly told us, we would only be
doing to panels with more groups together, so it would be less exhausting for
us. We arranged chairs and the kids got
in we began by introducing ourselves. I
told them my name was Ben Edwards and I was twenty-four and a student at the
University of Central Missouri who ran a group for students with autism and I
had two blogs related to autism. Eric, I
learned, was in community college and wished to become a zookeeper and was a
counselor at the camp. At the end of the
first panel, a camp board member approached me and introduced himself.
“Hi, Ben,” he said, “I heard you, and I thought you were just
great. You are clearly very intelligent
and articulate and a great advocate.” The
second group came in, along with a young neurotypical counselor, who I
recognized from last time. I found her
nametag and saw that her name was Kayla. With each answer we gave, the children clapped, and Kayla looked at me,
her eyes watered like the last time. The
last question was, “What parting advice would you give these campers?”
“I
would say that some people would say that some of your 'special interests' as
people with autism may not get you anywhere, that there might not be a demand
for them, but there are several autistic people like Temple Grandin, Daniel
Tammott, and others who had their special interests and they managed to make a
career from them, so I would say that whatever your special interest is, go for
it.” People clapped and several campers
and counselors came up to me and asked me questions. “Do you enjoy being autistic?” “Did you ever use sign language?” “Were you ever completely non-verbal?”
After
I had answered all these questions, Kayla said to me, “Thanks for coming,
Ben. You’re an inspiration.”
“Thank
you,” I said, and then asked her and Cassidy, “Do you two have Facebook?”
“Yes,”
said Kayla. “It’s Kayla Rodes. R-O-D-E-S.”
“Cassidy
Goodman. G-O-O-D-M-A-N.”
Thank
you,” I said.
“And
you’ll have to message me the address of your blogs,” said Kayla.
“Definitely,”
I said.
I
drove home with Michelle, thanking her for the ride, and relaxed, tired after
an exhausting day. I managed to find
Cassidy on Facebook, though for some reason, I couldn’t find Kayla, and decided
to ask another counselor like Cassidy about it. After watching a bit of TV, a paced momentarily in the kitchen,
remembering the Turkish leader Ataturk having died at the age of 57, wondering,
half-seriously, if a similar fate wasn’t in store for me.
