Inside the Story: Children with autism transition to adulthood

"The transition" is a tough, sometimes overwhelming time for parents of children with autism.

When most of us think of autism, our minds immediately picture children. The reality is these children eventually grow up to become adults.

In the autism community, this is often referred to as "the transition." It's when a child ages out of school and is forced to enter the real world. It's a tough, sometimes overwhelming time for parents.

"Up until now, we've had so many services. We've aged out of the pediatrician, we've aged out of pediatric therapy and now we're aging out of the school system," said Cindy Prescott.

Prescott's 22-year-old son Michael is going through the transition period right now. This year will be his last at Damonte Ranch High School where he takes classes to help him with basic skills like cleaning, dishes and laundry. As basic as they are, for Michael and other students with severe autism, they can be extremely difficult. But even if they're not ready to go out on their own, they don't have a choice.

"Usually they don't want to leave, they want to be here forever, but unfortunately that can't happen," said special education teacher Jessica Daum.

Prescott says she and her husband have been preparing for this day since Michael was about 12. But even with 10 years of preparation, the fear and anxiety intensifies with each passing day.

"The closer we've gotten to 22, the more frightening it becomes because I don't know what's out there," she said.

Dr. Larry Williams, of UNR's behavior analysis program, has been dealing with autism for more than 40 years. He's watched the explosion of cases over the past two decades go unexplained, and now works with families dealing with a system he says isn't prepared for an already overwhelming demand.

"As long as I've been exposed to the issue of intellectual disabilities, we're playing catch-up constantly; people don't know what to do," said Williams.

Depending on the degree of autism, some families can make it a smooth transition into adulthood. For others, it's a cruel struggle that echoes the battles families had when their child was still young -- struggles that include not enough funding for programs and treatment.

Williams said, "They've seen the unfairness, they've seen the difficulty, and they don't trust the world to help care for their child. Then what happens is they pass away, and now that child is introduced to a system cold turkey."

That autistic adult essentially becomes a ward of the state, living their lives out in a group home or state facility.

It's a heartbreaking reality Prescott can't stop thinking about.

"I lay awake at night afraid, afraid for him not just for this transition, but for when my husband and I are gone," she said. "Who's going to be there with him? Will he still be happy?"

Until that day comes, Prescott will continue her fight and hopefully watch Michael live as normal an adult life as possible.

CLICK HERE for more resources to help families dealing with autism prepare for the transition to adulthood.

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