Advocates rally at Capitol on World Autism Awareness Day, looking for legislative support
Jessica Fleming, Pioneer Press, April 2, 2012 –
The sign read, “For Noah, our 1 in 88.”
There were others: “For Elijah, our 1 in 88,” and “For Andy, our 1 in 88.”
The names and numbers refer to the U.S. Centers for Disease Control’s announcement last week that the prevalence of autism has reached the rate of one in 88 children.
On Monday, April 2 – World Autism Awareness Day – advocates crowded into the state Capitol rotunda in St. Paul to put a face on the burgeoning disorder.
“We have our work cut out for us, and we have to work together to make sure people with autism have what they need,” said Kim Kang, community outreach advocate at the Autism Society of Minnesota.
Gov. Mark Dayton and other state leaders addressed the crowd. All acknowledged the need for increased support for those with autism.
“Those of you caring for people with autism, I admire so much the dedication it takes,” said Dayton, who has a 20-year-old nephew with autism. “I know what it did to my sister and her family.”
Autism is a spectrum disorder, meaning that its manifestation looks different in nearly every diagnosed person. But most people on the spectrum have difficulty reading social cues and establishing relationships with others.
The rate of autism has grown from one in 110 in 2006 to one in 88 in 2008, the most recent data available. Researchers said last week that the data suggest that rising awareness of the disorder, better detection and improved access to services can explain much of the increase, and perhaps all of it.
Boys are five times as likely as girls to have autism. One in 54 boys in the U.S. has the disorder.
The governor gestured toward 11-year-old Tristan Fisk of St. Paul, who sat in the front row of the audience, holding his own sign: “Stand up for autism! I am more than a statistic.”
“I’m going to do everything I can to make sure you get the care that you need,” Dayton said.
Though bills to require autism coverage are making their way through the Legislature, lawmakers
who spoke at the event lamented a lack of support from other legislators.
“There isn’t interest in a mandate,” Rep. Kim Norton, DFL-Rochester said.
Norton, a special education major who worked with special needs families, said she watched parents struggle to get help for their children.
“Frankly, I think it’s unfair that parents have to hire an attorney to get the services they want for their children,” Norton said to applause.
Eileen Foley was at the event to tell lawmakers about her struggle getting insurance for her 10-year-old son, Padraig Foley, who has autism.
Her daughter, Fionnuala, 8, held a sign that read, “My brother deserves insurance!!!!”
Foley, who lost private insurance along with her job in 2008, said her son is now covered by Medical Assistance, but it doesn’t fund everything.
“We were denied by every single insurance company,” she said. Foley now works from home but doesn’t have employer-funded health care. Even if she did, she said, it would not cover Padraig.
Foley worries that her son’s behavioral therapy, which has made “a world of difference” for her family, will not be funded soon as the state evaluates which treatments are effective.
Health care wasn’t the only thing on the minds of those gathered at the Capitol, though.
Many said they were worried about the future of the children who are now or will one day be high school graduates.
Legislation also has been proposed to offer employment services for people with autism, to help them find jobs and support them in the workplace.
Drew Larson, 17, of Apple Valley has autism and recently started work with Best Buy.
The Eastview High junior said he was grateful for the support he received when he started his job.
“People with ASD (Autism Spectrum Disorder) can sometimes struggle with new things, and struggle I did,” Larson said.
But he said, with extra training and support, people with autism “make awesome employees.”
Larson, who plans to go to college, had a message for people who might not understand autism.
“People assume we are weird,” he said. “If we look weird to you, so be it, but we are talented, kind and hard-working people.”
Tristan Fisk, the boy Dayton gestured toward, said after the event that he was pleased with the attention paid by lawmakers to autism.
Plus, “it was a perfect day to play hooky from school.”
His mom, Tina Fisk, agreed, with one caveat:
“I wish (change) would happen faster,” she said.
The Los Angeles Times contributed to this report. Jessica Fleming can be reached at 651-228-5435. Follow her at twitter.com/jessflem.