For kids with autism, a different way of learning

In classrooms at Henry J. Kalfas Elementary School in Niagara Falls this past summer, enthusiastic teams of college students led groups of youngsters aged 4-6 through jam-packed days of life-skills lessons disguised as fun and games.

Summer camp? Yes, but with a vital purpose.

Instead, it’s a treatment program for children with autism devised at Canisius College’s Institute for Autism Research. It offers a unique social skills intervention that starts with young children, but could improve the quality of life for all autistic people.

“While the program is a treatment program, the children will see it as a summer camp,” say the SummerMAX program’s instructions for parents. “We do not tell the children they have autism.”

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The Institute, founded by Canisius psychology professors Marcus Thomeer and Christopher Lopata in 2009, just received a nearly $1 million grant from the U.S. Department of Defense to study whether their interventions can be made widely available through after-school programs.

Canisius autism research

Dr. Marcus Thomeer and Dr. Christopher Lopata co-founded the Institute for Autism Research at Canisius College.

While much autism research has focused on using one-on-one behavioral training to reach the most severely disabled kids, the number of people diagnosed with autism has ballooned to include a majority of so-called “high functioning” kids who are understudied and underserved, the Canisius researchers say.

As knowledge of the range of autism symptoms has increased, many people with IQs above 70 who have language and cognitive abilities have been identified as autistic due to their difficulty grasping social and communications skills that enable them to interact with others, the researchers say.

While two-thirds of people with autism now fall into this group, studies indicate only 17% to 25% receive social interventions through schools and clinics, Lopata said.

“That is an extraordinarily low number,” he said. “Three quarters of kids are not getting intervention, which seems crazy given the nature of the diagnosis. A hundred percent should be getting it.”

Many IAR studies, funded with over $11 million in federal and foundation grants, have shown that autistic children without intellectual disabilities can acquire social skills through intensive intervention programs, vastly improving their future ability to get jobs, have friendships, engage in social activities and function apart from their parents.

The interventions could be life-changing for many more kids if offered at schools across the country. The question the DoD study seeks to answer is how best to accomplish that. The answer may be equipping after-school programs to provide the interventions by training existing staff to use them in a familiar setting that groups autistic children with “neurotypical” peers.

Canisius autism research

Counselor Claire Netti observes and tracks points to award or deduct from students on the autism spectrum as they participate in a class discussion during the SummerMAX program at Henry J. Kalfas Elementary School in Niagara Falls.

How it works

On an August Monday in Niagara Falls, the Skill of the Day was “Having a Conversation.” In one room, three teachers – all undergrads hired as summer interns – worked with a group of five kids on the elements of interacting with others, a skill that eludes many autistic people.

Intern Kathryn Visco, a student at John Carroll University in Cleveland, called two children, a girl and a boy, up front to role-play a conversation about dinner. The little girl played the mom. “What do you want for dinner?” she asked. The boy glanced down.

“If he’s listening to his mom, where is he going to look?” Visco asked the group.

“At her!” two kids chimed in.

“Point for listening!” Visco called out as her two co-teachers kept score of behaviors they hope to reinforce – or not – throughout the day. Each day of the five-week camp is filled with interactive activities that reinforce a different social skill, such as playing a game of “Keep the Balloon in the Air” while holding hands to teach cooperation and problem-solving.

Canisius autism research

Counselors Kathryn Visco, left, and Claire Netti, center, play games with children on the autism spectrum participating in the SummerMAX program at Henry J. Kalfas Elementary School in Niagara Falls as Deandra Clarke, right, tracks points awarded to students for positive behaviors and deducted for negative behaviors. The games are intended to follow lessons about behaviors and social interactions to allow the students to practice what they learn.

At the end of each 10-minute activity, the teaching team counts down, “Five, four, three, two, one – Point Review!” and shows each child their point sheets with green hash marks for target skills like making eye contact and answering a question and red for undesirable behaviors like interrupting or ignoring a question.

Most of the time, for most of the kids, green marks far outnumber red. More green points mean rewards like playing with a preferred toy or getting more computer time at home.

Thomeer and Lopata developed curricula for this model of teaching social skills over 20 years since founding the Canisius institute. They have trained 475 interns and more than 550 professionals to teach the interventions with some 1,100 autistic children in WNY.

The team has literally written the manual on how to “decode” dozens of social skills for autistic kids, from negotiating or asking for help to “using nice talk” and “accepting no.” Rather than teaching kids one-on-one in rote behavior training, their goal is to practice social skills over and over in a group setting so they become second nature over time, what they call “social knowledge.”

They devised their five-week SummerMAX programs for kids aged 4-6 and 7-12 at the Institute, located in Canisius’ Science Hall. (They use the suffix “MAX” because the programs maximize potential of autistic children to lead fulfilling lives.) Over the years they have modified and tested the program in clinical, home and school settings (SummerMAX, HomeMAX and SchoolMAX), with some of the first children now beyond college.

The programs are led by college students in coveted internships who receive 40 hours of training to team-teach the interventions.

Visco, a teacher in the SummerMAX program at Kalfas Elementary, said she had watched professionals work with autistic children, but her IAR internship trained her to engage with kids individually and in groups, handle outbursts or upset in a calm, reassuring way and see children bloom over time.

“Getting to see the way kids improve is really cool,” she said. “In the beginning of the program, they would play by themselves. Now they play together and talk to each other. As you’re teaching it, you’re not always sure they’re really learning it, but then you get to see that they really are.”

Improving access

Clinical research trials show the methods work across all settings, but the most accessible – school – also presents barriers. Asking schools to hire additional staff and find ways to work the curriculum into the school day is, for some, asking the impossible.

Enter After-SchoolMAX. The new DoD grant will allow the institute to offer their interventions in after-school programs using existing staff – “paraprofessionals” – to teach them.

“If we can get into an existing after-school program and train paraprofessionals, that will be ideal,” Lopata said.

A total of 24 schools will participate in the three-year study, including 48 kids ages 7 to 12 diagnosed as autistic without intellectual disabilities. The plan is to have each after-school program include two autistic children and 12 to 15 of their peers for 90-minute sessions four days a week for eight weeks.

“Four days a week allows a kid to miss a day,” Thomeer said. “We want to make sure the kids are going to get enough of the intervention for it to be effective.”

Canisius autism research

Dr. Marcus Thomeer, who co-founded the Institute for Autism Research at Canisius College, gestures as he presents the series of research and treatment programs developed at the institute.

A positive difference from other programs is this pilot will include mostly neurotypical children, Lopata said.

“This model is nice because it’s being done in the kids’ own after-school program with kids without disabilities too, so there’s opportunities for the kids with autism to develop friendships in a supportive environment,” he said. “One criticism of outpatient work is the improvements might not generalize to school. A kid might show improvement here but when they go out to school, they may have problems.”

The researchers are currently analyzing data for a long-term study of 102 autistic children who participated in the SchoolMAX program – with “separation times” of 2 to 7 years – hoping to show that most keep the skills they acquired.

Meanwhile, they have front-row seats watching children gain social skills and get lots of anecdotal evidence from their families.

A dad who banged an elbow was pleasantly shocked to hear his autistic son ask, “Are you OK?”

“Wow, what are they teaching him?” he asked his wife. “We’ve gotta keep him in that program.”

A grandfather picking his grandson up from “camp” approached Thomeer and teared up while telling him, “I used to not be able to have a conversation with my grandson. Now I can’t get him to stop talking.”

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