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Program helps autistics aging out of school

Friday, December 31, 2010 | 4:43 p.m. CST
Tommy Ney, 22, of Overland decorates the Christmas tree with his mother Christy Ney. Tommy Ney is a low-functioning autistic who does not fit into other day programs because of extreme behavioral issues. He is participating in a brand new program for autistic adults whose only other option might be institutionalization.

OVERLAND — Tommy Ney put an ornament or two on the Christmas tree in his family's living room. But he wasn't feeling the moment.

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

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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 firsts since he joined the Midwest Adult Autism Project three months ago.

Tommy Ney 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 sometimes 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, 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 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 was 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 Ney its first client. Josh Gay, who has Asperger's syndrome, a milder version of autism, transitioned in recently from the center's other programs, and three other students soon followed. Goolsby said he 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 him or her. Clients 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 including playing games, watching movies, and 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 Gay, who's even bigger than Tommy Ney, 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 Ney and Josh Gay 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.

When Tommy Ney and Josh Gay get upset or overly excited, they're steered toward the project's padded room. Goolsby and Weber say it's a place to stretch, relax and practice coping strategies.

"I don't want anyone to think this is where they go when they're in trouble," Goolsby said. "It's not a kiddie prison or a timeout room."

They've put Tommy in the room twice on a nonvoluntary basis. He accidentally gave Goolsby a fat lip during one of those incidents.

Most of the time he's in there because he wants to be, lying on the floor, listening to music and watching a wave machine.

The room is also equipped with a video camera so Goolsby and Weber can figure out what works best at calming their clients down.

All interventions and lessons are data driven, Weber said. She flips through charts that show how Tommy Ney and Josh Gay behave in almost any given situation.

"A lot of times they need prerequisite skills," she said. "For instance maybe they can't verbalize that they need a break."

Part-time speech and occupational therapists help with that.

Josh Gay has earned his GED and has a rich vocabulary, but he has behavioral issues, too.

Goolsby and Weber timed how long he could go between episodes of challenging behavior. It was about three hours. That gave them a baseline to work on as well as an idea of when to give him breaks.

Recently, when Goolsby told Josh Gay that it was Tommy Ney's turn to pick a game, he looked at Goolsby and said: "I'm very disappointed."

His mother Susan Gay was surprised to hear this. It was a breakthrough.

"He can still get physical and throw things and do a little yelling," she said. "It used to last hours and hours. Now, we're down to minutes."


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