PLEASANT GROVE — During the month of April, one group in particular works to increase attention of autism for Autism Awareness Month.
Autism Speaks has gained national and even international traction in its efforts to grow "into the world's leading autism science and advocacy organization," according to its website.
It has also gained attention from Utah's autistic community, some of whom have expressed distaste for the group's approach. These individual voices are rising together, often very passionately, seeking acceptance for who they are rather than awareness.
"Autistic people in general, we really don't like Autism Speaks or anything it promotes," Alyssa Amott said.
Amott said she is autistic, and prefers to be called an autistic person instead of a person with autism.
Shalia Martin also prefers to be called autistic. She said her autism is part of who she is. Her 17-year-old son also is on the autism spectrum and her 3-year-old daughter is being tested, she said.
Autism spectrum disorder is described as a range of neurological disorders involving a level of difficulty with communication and interpersonal relationships.
"Most of us would like the autism awareness month to go away in general. Not because we don't want awareness, but because people are already aware," Martin said.
Instead, these individuals want to see a month of acceptance, advocacy and support to improve quality of life.
Julia Bascom, who is autistic, is the director of programs for the Autistic Self Advocacy Network. She said the group has a number of concerns about Autism Awareness Month.
"We see that Autism Awareness, which is nominally about providing accurate respectful information about autism… often gets used to scare people, and to portray this very offensive, outdated stereotyped view of autism and of autistic people," Bascom said.
"The first thing people will say when they see me is, well you don't look autistic," Summer Perkins said, who is autistic.. "And it's like, of course I don't. You don't have my brain under a microscope now do you."
"Maybe we've been given a faulty idea of what autism is supposed to look like," she said.
There needs to be more discussion of what autism may look like for a lot of people, she said. "We're not all geeky, we're not all nonverbal. Some of us are."
Amott said she's had relationships end and has been treated like a child when she tells those close to her she's autistic.
"It don't change how I am as a person, I'm the exact same person they've known since I was three," Amott said. "As soon as they have that bias it's something that needs to be fixed and something that needs a cure, then I'm not a person anymore."
The Autism Speaks website states it is "dedicated to funding research into the causes, prevention, treatments and a cure for autism."
But Amott said she doesn't want a cure.
"It's irritating to me because I don't see anything with myself that needs fixing. I see society needs to have increased awareness of how to interact properly," she said.
Martin said she doesn't want a cure for her or her children either. But said she isn't anti-help or anti-support.
"Would I cure somebody who is non verbal? No. But would I make sure that they have access to an iPad and whatever system they have to communicate with? Absolutely," she said.
In need of a cure?
Martin said not wanting a cure doesn't mean she doesn't want people to feel better, especially if they are in pain.
"Part of the problem though is people hear, and we say that we're against having a cure and they seem to think we're totally OK with everybody being exactly as they are. And that's not true either."
Perkins said there are aspects of autism that can be helped. She, for example, said she sees a psychologist for anxiety and depression that are associated with autism.
"You can't cure autism without it going back to the very beginning," Perkins said. "Autism has colored my experience since before I was born."
"All of my problems that I have with neurological things are from anxiety, they're not from autism," Amott said.
Bascom acknowledged that there are difficult aspects in the lives of autistic people.
"But by and large those are things that aren't because we're autistic, so much as they're things that are happening because we're autistic in a world that doesn't accommodate us," she said.
Perkins describes it as being a diesel engine in a world where everyone tries to fill you with gasoline.
"And then wonders what's wrong with you," Perkins said. "I'm not broken. I'm a diesel engine that works just fine. It's just that everybody's giving me the wrong fuel."
Bascom, Perkins and Amott said one of the things they wanted to see from Autism Speaks was the representation of more autistic voices.
Autism Speaks said it does have autistic people involved in the organization.
"We have people with autism working in important roles at the organization and serving on our board advisory committees," CJ Volpe, Chief of Media Strategy for the group, said.
Volpe declined further comment on other concerns raised by critics.
Bascom said the goal of the Autistic Self Advocacy Network is to enable autistic people to participate in any discussion about autism, whether they are verbal or non-verbal.
"I would like to see autistic people talking and I would like to see neuro-typical people listening in whatever way autistic people choose to communicate," Perkins said.
"One of the biggest problems with the month of April for most of us, is that the rhetoric is really, really harmful that comes out in April," Martin said.
She mentions words like heartbreak, epidemic, crisis, tsunami— words that are used in the Autism Speaks informational video.
"A lot of the rhetoric is so harmful. Even if you have autistic kids yourself, the last thing you want is them to sit there hearing oh I'm a burden, I'm a tsunami, I'm an epidemic. My mom wishes I wasn't me," Martin said.
According to the Center for Disease Control 2014 Community Report on Autism, one in 54 children in Utah are identified with autism spectrum disorder. In the U.S., one in 68 are on the spectrum.
In Utah, one in 34 boys are diagnosed with autism spectrum disorder, according to the report. One in 135 girls are diagnosed.
Shanda Gonzalez has a different view. She said she was scared when her daughter was first diagnosed with autism and is grateful for the help Autism Speaks provided.
"I was petrified. I didn't know, and I still don't know what the future holds for her," she said.
She said everything she thought she knew was now changed.
"You think, am I doing the right things, and am I giving her the best chance that she has to be successful in this world," she said.
She needed resources and answers. That's when she turned to Autism Speaks. Gonzalez is now the chair for Utah Walk for Autism.
"We all have differing reasons why we want to be part of Autism Speaks, but the bottom line is, is we want our loved ones to be accepted and to succeed in this world," Gonzalez said.
Perkins also acknowledged that when she needed practical advice, for example getting through college, she found Autism Speaks' resources useful.
She said everyone is in this together.
"We all have our challenges," Perkins said. "Everyone's disabled in some way but everyone has their own place where they really shine. And autistic people are no different."
Bascom said she wants others to know they are happy.
Tone it down
Martin and friend, Kassiane Sibley decided to created their own group called Tone It Down Taupe.
"(We) started doing it a couple years ago, kind of as a goofy thing," she said.
She describes the group and its Facebook posts as very tongue in cheek.
"I've taken the diagnostic criteria for autistics and I've flipped it and made it sound like normal people are the diseased ones," Martin said.
Jokes aside, they were able to do an essay contest and gave away four tablets to assist adults with autism.
"As tongue in cheek as we are for Tone It Down Taupe, it does have a serious message behind it," Martin said.
"It's tone down the hateful rhetoric. Calm down. You might not like the hand you were dealt, but this is the hand you were dealt. This is what you've got, and all the alarmist language is not going to fix it. All it's going to do is make your kid hate themselves."
Says Bascom: "We'd like people to know accurate things about us, to know that we exist and that we are people and that we have a right to be in our communities and to participate in our communities.
"We want to see, most of all, money going toward ways to support us in speaking for ourselves," Biscom said.
Amott said she wants those who know someone who is autistic to talk to them during the month of April.
"Ask them how they want to be treated, how they see things, how they want to communicate with people, how anything," she said. "Because we're so used to being spoken over or spoken about that nobody every things about speaking to us."