They volunteered their time and their money. They met frequently, sometimes weekly, writing complicated bylaws and brainstorming ways to help others who have been touched by autism, like they have.
They did it all out of love, for their own children and the children of others. And on Friday, it all came together.
The Autism Council of Utah met for the first time Friday morning, attracting some three dozen parents, advocates, state employees and influential agency heads, each of whom pledged their full support to the body.
Formed by educators and parents of autistic children, the private, nonprofit organization seeks to provide a neutral, one-stop resource for parents and agencies affected by autism and related conditions.
"It's really difficult to receive this diagnosis and be overwhelmed with that, let alone learning how to deal with it," said Cheryl Smith, a driving force behind the council. It was Smith's 8-year-old son, Carson, for whom the private school voucher program for students with disabilities approved by lawmakers in 2005 was named.
"I'm so excited about the potential for this council," Smith said. "As a parent, I'm thrilled that the professional side, the agency side, is willing to participate."
Utah first lady Mary Kaye Huntsman addressed the group early Friday, and her husband, Gov. Jon Huntsman Jr., was scheduled to speak, but a conflict prevented his attendance. In a letter of support, Huntsman notes that the council "will help enable Utahns with autism or a related disorder to gain access to existing resources and information for all ages."
"We are blown away by everyone who is here ... people who have knowledge and power," said Jocelyn Taylor, an education specialist for the Utah State Office of Education and member of the council's leadership team.
Incident rates of autism have grown significantly over the past 10 years, with one in every 166 children affected by the disorder, according to the Centers for Disease Control. In Utah, 1,500 children in the public school system have been classified with autism, and the Utah Department of Health estimates that more than 300 children born this year will be diagnosed with autism.
Of the 4,000 Utahns served by the state Division for People with Disabilities, 660 have autism as either a primary or secondary disability, said Marie Christman, deputy director of the Utah Department of Human Services.
"That is a very critical societal issue; it's not just an issue for the families dealing with autism," Christman said Friday.
While overwhelmed by Friday's attendance, organizers were heartened by the message they believe it sends about the importance of improving resources for autistic children and their families, while also supporting research and policy initiatives.
"It's important for our kids, it's important for the parents to know they have some support," said council president Emilie Tanner, a West Jordan mother of two young children with autism.
Council members on Friday split into committees that will focus on various areas of autism. The full council will meet only twice a year, but committees will meet as often as they feel necessary. So far, all costs have been paid out-of-pocket by members of the leadership team, but the women plan to pursue grants and other funding mechanisms to ensure the council's longevity.
"As we talked about this council, one of the emerging themes was we don't want this effort to go away," Taylor said. "We want it to be deep and strong and long-lasting."
E-mail: awelling@desnews.com