Beyond awareness: Utah family advocates for autism acceptance as demand for services grows

CLEARFIELD — For the Rigby family, life with autism comes with both good days and difficult ones.

"A lot of times he does try to talk to us, and we can't understand what he's saying, which does get frustrating for everybody involved," Alicia Rigby said.

Their 6-year-old son, Gavin, was diagnosed with Level 2 autism at just 17 months old.

"He's the happiest kid — he's everybody and anybody's friend," James Rigby said.

Gavin can communicate most of his needs but struggles to have a conversation.

"Mentally, he's about 2 to 3 years old," Alicia said.

Experts say early signs of autism spectrum disorder can include delayed speech, limited eye contact and difficulty with social interaction. Gavin's parents first started noticing signs before his first birthday.

"There's a grieving process of the life that you imagined for your kid. And because of Gavin's diagnosis, we don't feel like he's going to have that life," James said.

Like many families across Utah, getting help hasn't always been easy.

The couple said they were on waitlists for years.

"Autism services are very much needed throughout all of Utah," Alicia said.

In Utah, about 1 in 37 children are on the autism spectrum, highlighting a growing need for services. Providers are working to address that need by expanding access to early intervention and care closer to home.

"We're hopefully reaching the community in that way of providing another service in that area," Dr. Jess Osos, PhD, the behavior analyst supervisor at Intermountain Health's Applied Behavior Analysis Clinic in Riverton, said.

The clinic opened just over a year ago and is already at capacity.

"As autistic children grow older, that developmental gap between a typically developing child at the same age and their developmental level gets bigger and bigger, and so if we can provide services at this earlier age, we're able to close that gap a little more quickly," Osos said.

Gavin now attends an ABA-based school, where he receives support through speech and occupational therapy, helping him build communication skills and navigate daily life.

"He still struggles with his fine motor skills, but for the most part, he's come leaps and bounds," Alicia said.

"Some days are going to be really good, some days are going to be really bad, and that's OK," James said. "As long as you keep moving forward and try to do what's best for your kid, that's all you can do."

While April is Autism Awareness Month, many families say it's about more than awareness — it's about acceptance.

"His disability doesn't define him, and we just want him to be treated with kindness and a little bit of normalcy, if possible," Alicia said.

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