Utah families search for support as autism rate climbs

SALT LAKE CITY — When Ty Anderson was just 22 months old, the smiling toddler changed. He stopped talking. He stopped progressing.

Ty’s mother, Laura Anderson, spent months arranging speech therapy, intervention, and psychiatric sessions before learning her toddler had something very new to the Andersons: autism.

This was 1999, and Laura Anderson says most of her family had never heard the word. Support and resources were scarce. Anderson was told about just one preschool that could help Ty.

“We were 13th on the waiting list and devastated,” she said.

In the 19 years since Ty’s diagnosis, Anderson says she’s watched more and more families go through the fear and desperate struggle for resources that she’s faced.

“We were able to get into a preschool at Davis School District, a diagnostic preschool for autism. There were four cute little kids. By the time we left three years later, there were two classes with 12 kids in each class,” Anderson said.

And the same preschool that put her on a waiting list back in 1999 now has thousands of people waiting for help.

The Centers for Disease Control and Prevention has regularly documented jumps in the number of kids diagnosed with autism. This year, it released a report showing yet another massive increase: For every 59 children, one will have autism. Compare that with just two years ago, when the rate was closer to 1 in 68.

“It really doesn’t surprise me,” said Anderson, who is also the former president of the Autism Council of Utah. “It’s an opportunity to get the appropriate help. It’s an opportunity to get the appropriate supports.”

For Anderson, daily life is exhausting. Ty can’t be left alone. He follows a close routine that includes school, skills training, and a relaxing movie before bedtime. His entire life revolves around stability and routine to avoid overstimulation. If he is overwhelmed, Ty can become violent because he doesn’t understand any other way of coping, Anderson said.

“It just never stops. That’s our life. That’s our norm and we don’t know anything else,” she said. “Autism never allows you to catch up, but that’s our situation. That’s our autism. Not everyone else’s.”

That has been a silver lining in the rising number of kids diagnosed with autism. Anderson said people have started to recognize the word and understand that every case of autism is different and needs individualized support.

“We’re starting to get, ‘Here’s your list of resources based on your child’s needs. Here’s your child’s individual needs,’ not, ‘Here’s your one option,'” she said.

When Anderson first began advocating for families with autism, she said the state Legislature was reluctant to listen. Over the years, lawmakers have started calling on the council for information and understanding. In 2014, the Legislature passed a bill to help families get insurance support for children with autism.

But Anderson says it’s not enough.

“Now they seem to be embracing it, but no one really knows what to do. The issue is funding,” she said. “The more we talk about it, it helps, but it comes down to dollars and cents. We have 2,000 people sitting on a waiting list waiting for services through the (Utah) Division of Services for People With Disabilities. That’s just not right.”