The Autism Onslaught
UM researchers develop programs to help Montanans cope with disorder
By Erika Fredrickson
Courtney Whalberg had an inkling something wasn’t quite right. By age 2, her son, Reese, showed no real interest in talking. Still, the Missoula property manager and her husband were new to parenthood.
“We weren’t really sure what typical child behavior looked like,” she says. “At the time the only thing I knew about autism – or what I thought I knew about autism – was that there was an inability to show affection. So, I didn’t think he had it. I just thought we were looking at a speech problem.”
When Reese was 3 years old, however, Whalberg took him to a kids’ bible camp and noticed much bigger changes. She watched him run the perimeter of the room as the other kids sat doing arts and crafts. He seemed to be in a world of his own. “I realized things were way off,” she says.
Soon after, Reese received a diagnosis of autism. But merely knowing the diagnosis didn’t ease Whalberg’s stress. What did this mean for their family? And where should they go from here?
“It’s kind of a scary thing, not knowing where to go for any information,” Whalberg says. “Everything on the Internet says one thing or another, and some of it can’t be believed. It was just a really scary time.”
According to the organization Autism Speaks, autism spectrum disorders are neurological disorders “characterized by social-interaction difficulties, communication challenges and a tendency to engage in repetitive behaviors.” Whalberg says that as she learned more about autism, she realized Reese was a classic case.
“He had zero eye contact,” she says. “He had very poor motor skills and fine motor skills. He wouldn’t respond to his name. It was like he was in a bubble.”
The turning point came when Reese’s physician directed the Whalbergs to the Child Development Center, where Reese was chosen to participate in a brand-new statewide program. That program, the Children’s Autism Waiver, provided him three years of free services, including 20 hours a week of direct, in-home support and intervention for autism.
Over the course of the three years, Whalberg watched her son progress in small but remarkable ways. He’s now 9 and can maintain eye contact. He’s learned to start simple conversations with, “Hi, how are you?” He seems less isolated.
“I think the program should be available to every family,” Whalberg says. “It’s been a huge blessing for us.”
Less than a decade ago, autism wasn’t on many people’s radar. The 1988 movie “Rainman” was popular culture’s primary reference for it, which isn’t a bad thing: Dustin Hoffman’s Ray put a sympathetic face on the disorder, but autism didn’t yet resonate with people on a daily basis. Back then it was diagnosed at about 1 in 10,000 children. Now it’s 1 in 68.
With the growing need for services, three educators at the University of Montana have spearheaded and implemented programs and projects, including the Children’s Autism Waiver, that aim for autism intervention from infancy through adulthood. By applying cutting-edge research and interdisciplinary approaches, the educators hope to make real-world impacts on Montana communities, as well as provide practical experience for UM students in the field.
And, already, they’re seeing promising results.
Ann Garfinkle got into special education 25 years ago, right around the time “Rainman” came out in theaters. Now an associate professor at UM’s Phyllis J. Washington College of Education and Human Sciences, she’s seen the impacts of the rise in autism diagnoses.
“One special ed director told me that for 13 years she only had one student diagnosed with autism,” Garfinkle says. “Last year – in one year – she had 13. If you only have one kid with autism you can plan around that kid, but if you have 13 kids, you need a program.”
Garfinkle helped implement the Children’s Autism Waiver in 2009, and she and other educators participate in it hands-on, traveling to Montana towns big and small to work with children in their homes. She helps them with developing language by teaching them to pick up 2-by-2-inch cards with images – milk, a toy car, a DVD – to express what they want.
“That’s a bridge to speech,” she says. “It helps them learn to talk because they see the power of communication.”
Kids learn to play and interact with one another. They learn coping skills, such as wearing earplugs in loud places. These are simple things, but they matter in the long term. Many kids with autism can learn skills like reading and math, but knowing how to socialize is one of the biggest challenges. Attributes of autism like repetitive behaviors (flapping their arms and rocking are examples), not wanting to try something new or being sensitive to loud noises, impact every aspect of their lives.
“School is social,” Garfinkle says. “It’s language, and it’s learning new things. Those kids come with two strikes, and school can be hard for them, so we give them lots of strategies. If you don’t know how to get along with other people, you won’t do well in life.”
One of the most repeated phrases in the autism field is “early intervention.” Studies have shown that the earlier kids get support for autism, the better they fare over their lifetime. It could mean the difference between a kid growing up to be an adult who lives with his parents to one who has a job and a circle of friends.
Early intervention has another plus. Autism costs families $3.5 million during the lifetime of an individual with the disorder, so early services that provide good outcomes reduce that cost.
Aside from the autism waiver, Garfinkle works on several other projects to that end. As the autism ambassador for the Centers for Disease Control and Prevention, she helps facilitate a program – Learn the Signs. Act Early. – to help parents and pediatricians clue in on early signs. Pediatricians are traditionally trained to measure things such as a kid’s height and general milestones. But early indicators of the neurological disorder can be detected as early as 1– it’s just that they aren’t.
“We have this gap between when kids can be diagnosed and when they’re actually diagnosed,” Garfinkle says. “So the whole idea is to move the needle to make an earlier diagnosis because one of the things we know is that the younger we get kids, the better their outcomes are going to be.”
Montana has a particular challenge because of its land size and low population. In small towns, where autism services are nonexistent, it’s even harder to get an early diagnosis. As Garfinkle and other educators deliver services across the state, they’re able to take note of where more support systems can be built in. Working with Marty Blair, the director of the Rural Institute, Garfinkle looks for training opportunities across Montana – Early Head Start programs; childcare services; school districts; Women, Infants and Children offices – anyplace a child could potentially get an early autism diagnosis. Identifying those kids helps with the larger picture.
“It gets the kids diagnosed but it also shows the need for service, so we’re trying to build this bigger system of service delivery,” she says. “The UM College of Education also has proposed a possible Montana autism center, which would allow us to consolidate and expand on the work we already do in this field. It would allow us to better meet the needs of Montana’s children and families affected by autism, as well as the needs of pre- and in-service professionals as we continue expanding the knowledge base.”
The hard work being done by Garfinkle and others across the state has exciting potential. It provides assistance for families and communities, educational development for University students working in special education and professional development for those already in the field. It’s also a chance for Montana to step up as a model for how to deliver autism services in a rural state.
“The University of Washington has 43 researchers doing genetics on autism,” Garfinkle notes. “UM probably is not going to have that, but we have a lot of rural and frontier populations. That’s where we can make a donation. So not only does it help the people of Montana, it helps the whole field because we’re answering those questions on how to do that.”
Once a week, up to a dozen elementary and middle school kids show up on UM’s campus to learn how to play together. The eight-week program, Youth Engagement Through Intervention, or YETI, allows school-age kids with autism to learn social skills.
At the beginning of each session, the kids trickle into the comfortable lounge space in the Curry Health Center RiteCare Clinic, where they start with a game and then move on to more structured activities. They learn specific rules about behavior – not interrupting, for instance – and when and how to make eye contact with people. With nearly a 1:1 ratio of kids to adults, the instruction can happen on individual and group levels.
“A really critical part of intervention for kids with autism is meeting their individual needs,” says Anisa Goforth, YETI co-founder and an assistant professor in UM’s Department of Psychology. “At the same time, by definition, social skills require more than one person in a group. So we also want to provide services to a whole group. It’s a challenge.”
Goforth started the program two years ago with Jennifer Schoffer Closson, director of pediatric services for the RiteCare Speech, Language and Hearing Clinic, which is one of UM’s teaching clinics. They met when Garfinkle invited them to lunch and the three of them talked about the need for autism programs that would serve a span of ages and provide University students with practicum experiences.
Inside the playroom, school psychology graduate students and students of speech and language pathology work together with the kids, while Schoffer Closson and Goforth supervise. YETI kids watch videos that model correct behavior, and they role-play to practice it themselves. Kids who are entering middle school learn how to navigate personal space in a gym class locker room.
“When there’s someone in one locker, you don’t choose the locker right next to them,” Goforth says. “These are things we learn implicitly in our society – implicitly because our brains are neurologically tuned to observe and notice other people’s behavior. But for these kids that’s much more of a challenge, so instead of assuming they can learn it through observing others like typically developing children do, we have to be very explicit.”
One of the most interesting approaches is peer modeling, where volunteer kids befriend the YETI participants and help them with the art of friendship. (One of the peer models is Schoffer Closson’s son.) It helps them practice being around kids who don’t have autism, without fear.
“The peer models know their job is to be a friend so kids can try out their skills without rejection,” Schoffer Closson says.
Danelle Whalen’s son, Rudy, has autism and has been attending YETI classes. When he started, he didn’t have any friends.
“He used to be super emotional with different kids around and unable to have conversations,” Whalen says. “He would just cry and break down.”
As Rudy learned the rules of how to interact, the wall between him and other kids broke down. Whalen says that he can now better express his feelings and, most notably, he can adapt to change.
“He has made friends there,” Whalen says. “He talks to some of the kids, and when he sees them out in public he’s able to say ‘hi’ to them.”
Those changes in Rudy have set off a chain reaction. More comfortable around people, he raises his hand in class, which is something Whalen says he never did before. And the more he engages in class the better he’s done academically, which means he spends less time in the resource room and more time in the classroom.
“The teachers said they can’t believe the change, how he’s opened up,” she says. “YETI made a huge difference for him.”
Peer and video modeling, role-playing and games already have been shown as effective in the field of autism research, but YETI is applying it in the real world. The program serves as a community service in the case of the kids, but the research and training opportunities for UM students are also huge.
“I want a school psychologist to go out into the field and feel absolutely comfortable and confident that they can serve children with autism in the schools – that they know the answers, and if they don’t know, they know where to go,” Goforth says. “And when they’re in a rural Montana town, they might be the only one working with children with autism, and they will have the tools to do it.”
A few years ago, Schoffer Closson heard a talk by Rudy Simone, an author and comedian who happens to have autism. Simone detailed the difficulties she had with college.
“She was bullied, she didn’t know how to organize her time and talk to her professor, and she dropped out,” Schoffer Closson says. “This woman is brilliant, and it was really unfortunate that she came to that decision.”
Schoffer Closson suspected there must be some UM students with autism who were in similar situations. With the help of Amy Capalupo from UM’s Disability Services for Students, she tracked down a few of those students. In 2012, just as she and Goforth started YETI, she created a program for college students called Mentoring, Organization and Social Support for Autism Inclusion on Campus (MOSSAIC).
Aside from being a service for UM students with autism, it’s yet another learning opportunity for UM students hoping to work in the field. Schoffer Closson’s undergrads have helped MOSSAIC students with organizing classes and homework. They’re also mentoring them in social aspects of campus such as developing friendship skills, understanding nuances in conversation, deciphering tone and figurative speech and subtext – things that so many of us take for granted. Those students also get a chance to connect with the community. Three times a semester, MOSSAIC hosts a social night where they’re joined by adults with autism who live and work in the community.
Programs for adults with autism are an important part of the lifespan support. Garfinkle, for instance, is developing a statewide program for adults with autism. The hope is that as early intervention programs reach more kids, those kids will be in a better position as they reach adulthood.
During the 2015 Legislature, Garfinkle will provide the latest results of the Children’s Autism Program. So far, they’ve been nothing short of phenomenal. Among several promising statistics, a few stand out: More than 77 percent of kids no longer needed services. And, more than half of the children were no longer symptomatic of autism. That may change, Garfinkle warns, because those kids may need services or “boosters” later in life, but it’s still a really good sign. It’s a good sign for Montana. It’s a good sign for these kids’ futures.
“I get really excited because I see this wave of kids who have had really good intervention,” Schoffer Closson says. “We’re working with some of them now. And I’m thinking, ‘You’re going to be going to UM someday. You’re going to be married someday. You are fighting the fight, and you’re coming back from it.’”
NOTE: Images for this article at Missoula's Child Development Center were taken during a Kindermusik with Valerie class. The classes are taught by Valerie Young.