April 2014 Issue of Encore
Area awareness of and efforts to aid those with autism gaining ground
By Zinta AistarsPhotos by Erik Holladay
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,”
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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.
Jesse Carrington, assistant coordinator for intensive treatment at the Great Lakes Center for Autism Treatment, hugs Joel Macauley, 8, for whom Carrington provides treatment.
“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.
Scott Schrum is CEO of Residential Opportunities Inc., which operates the
“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 ...
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