Accommodating autism: Where's the fine line?

Some see it as too harsh. Others see it as a last resort for safety.

A Minnesota church's efforts to bar a severely autistic 13-year-old boy from its Roman Catholic mass, saying he's a danger to others, illustrates the difficulties that surface when institutions and parents of autistic children intersect. As the number of children diagnosed with autism climbs, it's likely disputes over disruptive vs. dangerous behavior will also flare.

"This is an issue in many communities, for many families and many churches," said Pat Mellenthin, executive director of the Arc of Minnesota, which advocates for the disabled. "In most cases, families and churches do find a solution that works for them. And in this case, unfortunately, that didn't happen."

Instead, the issue landed in Todd County District Court on Monday.

The Church of St. Joseph in Bertha, Minn., filed a temporary restraining order barring Carol and John Race from bringing their 225-pound son, Adam, to church. An affidavit alleges Adam struck a child during mass, fought efforts to restrain him, pulled an adolescent girl to his lap and revved the engine of someone else's car. A parish statement said the legal move was a last resort after church leaders tried to accommodate and mediate, but the family refused.

Carol Race says that her son isn't angry and violent and that his actions and her family's efforts to calm him are misunderstood by a community that doesn't understand autism. She said the family's requests for accommodation haven't been fulfilled. She ignored the court order and took her son to church on Mother's Day, receiving a citation days later.

On Monday, after her court hearing was delayed until early June, Carol Race spent the day lining up legal help and giving interviews to national media.

New research says one in 166 children suffer from autism, a huge jump from the one-in-2,500 proportion researchers accepted for decades. From 1993 to 2003, the U.S. Department of Education reported a 657 percent increase nationwide in the rate of autism.

The Minnesota Human Rights Act mandates that people with disabilities can't be barred from public places unless there is a direct threat to the health and safety of others.

That law hasn't been tested in Minnesota as it applies to churches, said Minneapolis attorney Tammy Pust, who represents children and families with special needs.

Minneapolis attorney Joe Schmitt, who has represented employers and businesses in disability cases, pointed out that under federal law there's a legal distinction between distracting and dangerous.

"Is he doing something in the church that we think is annoying or that we would prefer not be done in church? That is not the standard," he said. "You can't exclude someone from that public entity merely because you don't like what they're doing."

Forty years ago, Brad Trahan figures, his son, Reece, 8, would have been placed in a state hospital. Reece has severe autism and mild retardation.

"Back then, people blamed the parents, whose self-guilt was so common that they'd keep their children at home or in an institution, living some kind of sheltered life," Trahan said.

Trahan, founder of the RT Autism Awareness Foundation in Rochester, Minn., is part of a new generation of parents of autistic children choosing a different approach.

"We're going to bring him out in society, to restaurants and churches," Trahan said.

He was stunned when a public high school in Rochester asked Reece to leave a high school musical in April 2007 because school officials said his son was becoming too much of a distraction.

Understanding the disability

Katy Thuleen, a Minnesota satellite director for Joni and Friends, an organization that focuses on "weaving individuals with disabilities into the fabric of a church and worship," said understanding the disability is the biggest obstacle to dispelling fear that a congregation might have about it.

If someone is disrupting with loud noises, explain that person's disability to the congregation to show they're not intentionally disrupting, she said.

Thuleen and others participate in an Interfaith Inclusion Network sponsored by the Arc.

Keeping all involved at the table to consider solutions is key, Thuleen said. Offering to send a family to a church basement to watch services through a television may feel exclusionary to families, she said. On the other hand, some churches have come up with solutions such as special-needs classrooms so those with disabilities can still be part of a community and participate with others, she said.

A local chapter of the Arc is offering to help find a solution in Bertha, Mellenthin said.

'It's not the norm'

Like the Race family in Bertha, Isaac Spero's family in St. Louis Park includes a 12-year-old autistic boy who's large for his age.

Spero was saddened by the Bertha church's decision to file a restraining order to bar Adam Race, but he said parents, too, must shoulder some responsibility.

"As parents, when we go to a playground or a public place, we have to be sensitive to the safety of the other children," Spero said.

"He didn't even flinch so as not to make my son feel bad," Spero said. "He gave him a hug and said he looked forward to seeing him next week."

The Races' dispute with their church, Spero said, is one extreme example.

"But the public needs to know that's not the norm," he said. "Day in and day out, there are people in schools and restaurants and playgrounds literally bending over backwards to help these children as much as they can."