Sunday, January 2, 2011

Midwest Autism Project helps those on the spectrum transition to adulthood

From the intro to the St. Louis Post-Dispatch story:

OVERLAND, Mo. -- Tommy Ney (pictured) put an ornament or two on the Christmas tree in his family's living room last Monday. But he wasn't really feeling the moment.

The sky was gray and Tommy, who's 22, tall and husky, was more interested in checking on the weather.

A few years back, a storm knocked out the power at his family's home for several days. Now, when it's cloudy, he worries incessantly, opening and closing the sliding patio door several times an hour to get a closer look at the sky.

Christy Ney was pleased that her son put ornaments on the tree at all.

It was a first — one of many since he joined the Midwest Adult Autism Project three months ago.

Tommy has also started — on occasion — cleaning up after himself, following instructions, and keeping his hands to himself in public.

He isn't as "bangy" as he once was either, Christy Ney said, referring to how he'll suddenly pound his hands on his chair and yelp loudly.

"He's using personal pronouns, too," added his sister, Amy Ney, 20. She's noticed this since returning home a few days ago from Truman State University in Kirksville, Mo., where she's studying speech therapy.

Trimming the tree with Tommy, Amy and their younger son, Andy, 14, is bittersweet for Tom and Christy Ney.

Twenty years ago, Christy Ney had finished the same yuletide ritual when she noticed something odd: Tommy was unfazed by the sparkly spectacle.

What's wrong with him, she wondered. A 2 1/2 year old should be looking at the lights and playing with the ornaments. They scheduled a doctor's appointment and a few weeks later, they had their answer: Their son was diagnosed as autistic.

Earlier this year, he aged out of the Special School District of St. Louis County, and the Neys had no idea where to go from there.

What do you do, day in and day out, with a 6-foot, 230-pound severely autistic man who's too volatile for sheltered workshops and most day programs? Quit your job and stay home with him? Institutionalize him?

Tommy receives $30,000 a year in disability payments from the Missouri Department of Mental Health. But Christy Ney said that doesn't cover the day program at TouchPoint Autism Services (formerly Judevine Center for Autism) in south St. Louis. And the few other options available locally can't provide the one-on-one attention he needs.

The Neys were searching for answers when they learned about another autistic man, Josh Gay, 23, who was taking part in programs at the Center for Head Injury Services in Maryland Heights.

Brain injuries and autism share a lot of functional similarities. So when the Neys asked about enrolling Tommy, the center decided it was time to create a separate program.

Tom Ney notes how 20 years ago, only one in 5,000 children were diagnosed with autism. Today, that figure is closer to 1 in 110. About 2,000 autistic children are enrolled in the Special School District, which means there's a growing need for adult programs.

Enter Rick Goolsby, coordinator of the project, and Melissa Weber, a behavioral therapist and owner of Best Behavior Consulting.

The two had worked together at TouchPoint and took what they learned there, added to it and developed the day program called the Midwest Adult Autism Project. The day program is based at the Center for Head Injury Services.

It officially started in September with Tommy its first client. Josh, who has Asperger's syndrome, a milder version of autism, transitioned in about a month ago from the center's other programs, and three other students soon followed. Goolsby hopes to grow to 24 clients in three years.

Clients are evaluated over the first 30 days so Goolsby and Weber can determine goals for each one and create a plan to reach them. They get one-on-one attention the first 90 days and two-on-one attention for the next 90 days.

The project's philosophy stems from the notion that even adults with severe autism have something to learn.

Ed Calvin and Annalise Evans, project technicians, help carry out the individual plans.

Days are filled with activities ranging from playing games and watching movies, to working on math puzzles and reading assignments. Calvin and Evans keep activities short and mix them up.

Autistic people like routine, but the only thing constant in life is change, Goolsby said.

They exercise in the center's gym, where Josh, who's even bigger than Tommy, lost 7 pounds in three weeks.

A dry-erase board in the activity room contains conversation topics and four basic rules for Tommy. He's to talk in a quiet voice, keep his hands to himself, stay with the group and follow directions.

In a room next door, Calvin and Evans teach basic living skills.

Recently, they worked on Tommy's table manners by breaking down the process of eating: Sit up. Take small bites. Chew. If you spill food, adjust your plate or chair.They videotape the lessons and send the DVD home with instructions so family members can repeat them.

"With autism spectrum, they won't take something from here out into the world in general," Goolsby said. It must be retaught in each setting.

They're also teaching Tommy and Josh to clean up after themselves.

"He's like a tornado," Christy Ney said. "I go to bed at night with a clean kitchen and wake up with every cabinet open, food on the table, the milk is out."

Lately, there's been less mess, and Tommy helps clean up. If he refuses, she tells him she's going to call Ed Calvin. It usually works.

"Before, he'd bang his head on the table and scream," she said