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A Different Way of Knowing

Area efforts to aid those with autism gaining ground

When Bruce Mills, an English professor at Kalamazoo College, speaks about the experience of having a family member with autism, one of the first words he uses to describe that experience is “isolation.” In part, that isolation once came from the choices Bruce and his wife made about their family’s social life.

It was difficult to take their son, Jacob, into public places — for fear of his sometimes disruptive and socially inappropriate behavior and for fear of being judged.

“I recall going to the movies as a family, with my wife, Mary, and our daughter, Sarah, and our son, Jacob,” Mills says. “We sat in the far corner and brought various supplies along as distractions for Jacob, but at some point he got loud. Someone in front of us turned around and said, ‘If you were good parents, you’d know how to deal with this.’”

Mills sighs, remembering. “I went off on him. I felt hurt. I had begun to hope that we could be out there as a family, but we couldn’t.”

That was a long time ago. Today, Jacob is 21 years old and has earned a certificate of completion for high school. He spends much of his time creating art for greeting cards. He continues to live at home. In the community around him, awareness about autism has risen, but, Mills says, there is room for more compassion and understanding.

According to the National Institute of Neurological Disorders and Stroke, “autism spectrum disorder (ASD) is a range of complex neurodevelopment disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior. Although ASD varies significantly in character and severity, it occurs in all ethnic and socioeconomic groups and affects every age group. Experts estimate that 1 out of 88 children age 8 will have an ASD. Males are four times more likely to have an ASD than females.” The causes remain under debate, although most experts agree that there is probably a genetic component.

“Having a son with autism has affected my personal and vocational journey,” Mills says. “I consider myself an advocate for those with autism and their families.”

As for that scene at the movie theater, it was only later, after giving it more thought, that Mills realized that he shouldn’t have been so put out by the other moviegoer, he says. “Thinking about it, I realized that moviegoer had a point too. He had every right to expect to enjoy a quiet movie.” But the important lesson to be learned, Mills says, was that no one should make quick and easy assumptions about the behavior of others. A tantrum in the grocery store aisle may not mean bad parenting.

Doing his part to help raise awareness about ASD, Mills has served in leadership roles with the Autism Society of Kalamazoo/Battle Creek and made presentations at national conferences. He also serves as a board member of The Gray Center, a nonprofit organization based in Grandville whose mission is to assist those affected by ASD.

Increasing understanding about autism drives Mills in these roles as well as in his academic work at Kalamazoo College and, most recently, as the author of An Archaeology of Yearning.

“An Archaeology of Yearning is not solely about autism, but it is about my relationship with my son,”

Mills says. “As my wife and I took turns putting him to bed, I would lie there beside him thinking of stories to tell. … There is such a beauty there. What a beauty it can be to see things a different way. His is a different way of knowing. I’m not going to say that autism is a gift, but I don’t know that I would eliminate autism. … Some of the behaviors need to be managed, but Jacob has been a gift to us.”

To help others to experience that different way of knowing, Mills teaches a writing course at Kalamazoo College called Crossing Borders: Autism and Other Ways of Knowing, in which he matches first-year students with families affected by autism for 10 weeks. By putting students deep into the lives of others unlike themselves, he teaches them the difference between reading and writing about a topic like autism and coming to know it up-close. “I want students to experience what it means to live with someone with special needs and not be fearful of that,” Mills says.

A center for treatment

Yet there are families struggling with autism who have challenges that go beyond what Mills addresses. The Great Lakes Center for Autism Treatment and Research opened its doors at 9616 Portage Road in August 2012. The center, managed by Residential Opportunities Inc. (ROI) and Western Michigan University, provides outpatient services but also offers a residential wing to analyze and treat children from ages 6 to 17 with dangerous behavioral problems.

“We looked at the growing need in the community to provide a residential program for children exhibiting aggressive, self-injurious behavior,” says Scott Schrum, CEO of ROI. “Our focus is on children who are ruining their families, making normal family life impossible. Our planning committee had been looking at this need for five years. We accepted our first resident the day after we opened.”
The autism center helps children with challenging behaviors develop skill sets so that they don’t have to live in institutions, Schrum explains.

“Violence and aggression are not inherent in autism,” says Calvin Gage, assistant director of Residential Services for the center. “It develops from a lack of communication skills in children with autism. When you can’t communicate your needs, there’s a lot of frustration. That child wants a glass of water but doesn’t know how to ask for it so ends up hitting people to get attention. Aggression becomes the way to communicate.”

What the center staff does, Schrum says, is work on language development, an area of great challenge for people with autism. “We teach a picture-exchange communication system called PECS. You look at a glass of water in a picture, put it in the child’s hands, the child shows the picture to staff — and a glass of water appears. If you want to play a game, you use a picture of a game to get access to that game.”
The diagnosis of children with autism is increasing by 10 to 17 percent every year, and the average cost to society of someone diagnosed with autism, through age 55, is currently estimated at $3.6 million.

These statistics come from the Centers for Disease Control, Autism Speaks, the National Autism Center and the Autism Alliance of Michigan, and they are shown in the margins of the local autism center’s website as a reminder to all that care for people with autism is unavoidable and on the increase.
“That cost may be even higher today,” Schrum says. “But with early diagnosis and intensive therapy, that cost can be half as much. An investment of $50,000 early on can really pay off.”

Many children are diagnosed with autism around age 2, although a pediatrician may see initial red flags when a child is 18 months old, Gage says. “New research is coming out that we may be able to diagnose autism even earlier, but it is at age 2 that there is typically an explosion of language. But in children with autism that explosion doesn’t happen. There’s a lack of eye contact, and that may start to show up already in infancy.

At the Great Lakes Center, among the therapies used to help children with autism is applied behavior analysis. ABA focuses on the principles that explain how learning takes place. Positive reinforcement increases useful behaviors while reducing those that may cause harm or interfere with learning
“There’s a lot of research backing that,” Gage says. “It’s evidence-based. Depending on the child’s age and diagnosis, we help create an individualized education plan to use at school.”

“There’s a lot to learn for the parents of children with autism,” Schrum adds. “Parents are usually shocked when their child is first diagnosed. Some are embarrassed. Some jump right in to do something about it. We encourage parents to acknowledge the diagnosis and begin treatment. We can help.”
Carly Piacentini, the interim assistant director of outpatient services at the center, is available to help children coming in on an outpatient basis. “We use ABA too, and we can help with skill development, helping children learn about self-care, toilet training and, of course, social skills and communication skills.”

The Great Lakes Learning Center, part of the larger autism center, offers 30 hours per week of therapies, behavioral interventions and diagnostic services on site, at the child’s home or at a combination of the two places.

Rehabilitation Works, headquartered on Balch Street in Kalamazoo, also has begun to offer services at the center, providing occupational, physical and speech therapy. “It’s easier for children with autism to get used to one place,” Piacentini says. “A family can go to our center to get all their services in one place.”

Farm therapy

The one exception, perhaps, is friendship with farm animals. That’s where another nonprofit organization, AACORN Farm, steps in. AACORN stands for Autism Agricultural Community Option for Residential Needs, and the group was founded in 2011 by Catherine Pinto, the mother of a now-20-year-old son, Tom, with autism, and Cindy Semark, the mother of a 40-year-old son with autism.

“Tom was diagnosed with autism before the age of 2,” Pinto says. “He’s one of the nearly 50 percent of people with autism who never develop functional language skills. At 17, Tom developed epilepsy or seizure disorder, which is common to more than 30 percent of people with autism. Tom lives at home and requires 24-hour supervision. Despite his challenges, though, he really loves farm animals, and I wanted to develop a residential agricultural program where he could someday live the kind of life that he enjoys. Not everyone wants to live in an urban setting.”

While AACORN is still seeking farmland of its own, the group has partnered with the Tillers International Farm, in Scotts, and with the Lake Village Homestead, east of Kalamazoo. Adults with autism come to the farms to learn to care for the animals, tend gardens and create art projects designed specifically for them. The farm program was designed by Dr. Elizabeth “Liz” Farner, a pediatrician by training and program director for AACORN Farm.

“Liz and I nicknamed Tom the Cow Whisperer because cows are his favorite animal,” Pinto says as Tom sits beside her happily paging through an album of photos of the farm animals at Tillers. Communicating with people can be difficult for people with autism, but communicating with animals seems to be far easier for many, she says.

“Tillers has horses, oxen, donkeys, chickens, goats, sheep and turkeys, and Tom loves all of them,” Pinto says. “AACORN chose to begin doing a vocational farm program to serve adults now as we begin our journey to raise funds and someday own our very own farm.”

“I had worked with people who have disabilities on a farm before,” Farner says, “so I had long had that at the back of my mind, the huge potential of farm therapy. Animals offer an unconditional acceptance to people with autism, and acceptance is hard to find for those like Tom. On the farm, they always fit in.”
“We’ve had pushback from some autism organizations, saying that life on a farm would be too isolating, that people with autism need to live in urban settings,” Pinto says. “But on the farm Tom connects with the animals but also with the people around him. This is his life choice. When my husband and I are no longer around to care for him, this is the kind of life that would make him happy.”

Pinto, along with the organization’s seven other board members (Pinto is president) has found herself fighting for the existence of AACORN Farm, however. “There are advocates in our state who are rigid about the fact that farms are institutions and are campaigning against us. They are seeking to write language into state and federal Medicaid rules that specifically define community as an urban setting so in essence that language would not allow AACORN to build homes in a farm setting.”

More REsources

Whatever option a family chooses, the good news is that options are increasing, although some people might argue not nearly fast enough. Pinto argues that the needs of adults with autism are not being addressed as children with autism grow into adults and graduate from the educational services provided for the

“The problem is that local community mental health systems are funded by taxes and are limited in what funds they have,” Pinto says. “The prospect of an increased need will inundate an already strained system.”

Meanwhile, organizations and support systems for people dealing with autism are growing in number in greater Kalamazoo.

The Kalamazoo Autism Center, which opened in 2008, provides day care for children with autism and other special needs at the Child Development Center, at 110 W. Cork Street. And Kalamazoo gained an important spokesperson in R. Wayne Fuqua, chair of the department of psychology at Western Michigan University, when he was appointed to the Michigan Autism Council by Gov. Rick Snyder in July 2012.

Fuqua represents state universities on the council, which operates within the Michigan Department of Community Health to oversee Michigan’s Autism Spectrum Disorders state plan. That plan provides for comprehensive, lifespan support to individuals with ASD and their families through access to information and resources, coordination of services and implementation of evidence-based practices.
With the council in place, a new law has recently gone into effect requiring insurance companies to pay for ASD diagnoses and treatment for children up to age 18. It does not compel autism coverage by self-funded insurance plans, which are regulated by federal laws, but does establish an incentive program to encourage employers with self-funded insurance plans to adopt autism coverage.

Fuqua and colleague Stephanie Peterson also recently received a $500,000 grant from the Michigan Department of Community Health to expand resources for those dealing with autism by using high-tech methods to help train mental health practitioners, parents and others dealing with ASD. The grant also will allow for the continuation of the Michigan Autism Conference, held for the first time last October in Kalamazoo.

The Kalamazoo/Battle Creek Autism Society, an area nonprofit serving Kalamazoo, Calhoun, Van Buren and Allegan counties, has been around for more than three decades. The local chapter was founded in 1982 by concerned parents seeking to develop a local support system and offer family events, support group meetings, parents’ nights out and information about resources. The society collaborates with other organizations to provide educational workshops.

While science continues to debate the causes of autism, the community at large continues to work on acknowledging, raising awareness of and supporting families dealing with autism so that no one feels isolated and every individual finds a place to fit in.

Zinta Aistars

Zinta is the creative director of Z Word, LLC, a writing and editing service. She is the host of the weekly radio show, Art Beat, on WMUK, and the author of three published books in Latvian — a poetry collection, a story collection and a children’s book. Zinta lives on a small farm in Hopkins, where she raises chickens and organic vegetables, and wanders the woods between writing assignments.

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