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MURRAY — As a child, Summer Perkins would highlight and memorize etiquette books all day in her room.
"I know all the details on how to meet the pope but I still couldn't introduce myself to the kid across the playground," she said.
She's 35, married and has a son who is on the autism spectrum. About three years ago, she was also identified on the autism spectrum.
April is Autism Awareness Month, and on April 2, the national nonprofit association Autism Speaks held "Light it up Blue Day" for awareness of the condition.
But some with autism feel that Autism Speaks doesn't speak for them and want to give voice to diversity in the autism community.
Perkins is one of those adding her voice to a rising chorus of others who want to see a different approach.
"Autistic people in general, we really don't like Autism Speaks or anything it promotes," Alyssa Amott, who is also autistic, said.
Perkins and Amott, who prefer to be identified as autistic rather than a person with autism, said they don't hear enough from autistic people during the month of April.
Autistic people in general, we really don't like Autism Speaks or anything it promotes.
–Alyssa Amott
"If we're talking about autism, autistic people are more than capable of telling you exactly what is going on with autism," Amott said.
Perkins called for more autistic people to speak up about their individual experiences with autism.
"If we're raising awareness of autism, maybe we ought to talk about what autism is really like," she said.
"Autism is great for me," Amott said. "All of my problems that I have with neurological things are from anxiety, they're not from autism."
Perkins said her introversion works well for her.
"I'm a little odd, but I'm a rock star at work," she said. "(I'm) known for being a creative problem solver. I can't see the box so I can't think inside of it."
Amott also has brothers who are on the autism spectrum.
"We all had the same parents, we all have the same background, we have the same everything. But we're nothing alike. Our autism experiences are completely different," she said.
Shanda Gonzalez is a local member of Autism Speaks and organizes Utah's Walk for Autism Speaks. She has worked with autistic volunteers in the past.
"We welcome those with autism to be part of our committee, as they are part of our community," she said.
Gonzalez said when her daughter was diagnosed with autism at age 5, she had lots of questions.
I compare it a lot to being a diesel engine in a world where everybody tries to fill you with gasoline, and then wonders what's wrong with you. I'm not broken. I'm a diesel engine that works just fine. It's just that everybody's giving me the wrong fuel.
–Summer Perkins
"All of a sudden everything you thought you were going to do is skewed," she said. "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 joined Autism Speaks for answers and support.
"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.
Ultimately, that's what Perkins and Amott want too.
"We should be moving more toward autism acceptance or autism advocacy more than autism awareness," Amott said. "Because people are already aware."
Amott hopes that during the month of April, people will simply talk with those in their life who are autistic.
"We want to be treated like people, because we are people and that's something that a lot of people tend to forget," she said.
Perkins said challenged lives are still worth living.
"I compare it a lot to being a diesel engine in a world where everybody 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."
Autism Speaks told KSL-TV they have autistic people serving on their board advisory committees and in other leadership roles. They declined further comment.
To counter the Autism Speaks "Light It Up Blue" event, Amott said many autistic people are supporting "Walk in Red" to push for autism acceptance and advocacy month.
