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Society, autistic youngsters face a balancing act

Posted Apr 29 2009 3:39pm

dont-laugh-at-me1 This titled post was also the title of an article in my local paper; The Patriot-News. To begin this an associated press piece and after searching The Patriot site, the Associated Press site, and google I can not find this article online. So I will type it by hand and include my response below the article.

By Dave Kolpack

Of The Associated Press

Fargo, N.D. - When a 13 year old Minnesota boy was banned from church after parishioners complained about his behavior, it exposed a painful truth so politically incorrect that some people feel guilty just saying it out loud: Some autistic children can be annoying and disruptive in public.

The case of Adam Race and others like him has laid bare conflicted feelings - among parents of these children and other people - over autistic youngsters in public places. And it has stirred debate over how much consideration one side owes the other.

In the case of Adam Race, a judge agreed with a priest in Bertah, Minn, who said the 225 pound teenager was disruptive and dangerous, and upheld a restraining order barring him from services. The priest said Adam spit, wet his pants, made loud noices and nearly ran over people while bolting from the church after services.

Carol Race, Adams mother, said the congregation’s claims are exaggerated. But a letter to the Star Tribune of Minneapolis, JoAnn Brinda of Crystal, Minn., said the Race family should have shown more consideration for others.

“I don’t understand why families that a challenged child who becomes loud and abusive remain at a service where all participants are quiet and contemplative most of the time,” Brinda wrote.

Susan Duclos of Peoria, Ariz, who writes the Wake Up America blog, called the Race story a “horrible situation all around.” ” I have known a few people over my lifetime who have had to deal with autism with their children,” Duclos said. “It’s as frustrating for them as it is for the public.”

Similar cases involving people with autism have played out in public recently. A California man was kicked out of a health club for screaming. a North Carolina boy was taken off a plane before takeoff after having a meltdown. A South Carolina girl was ordered out of a restaurant by the town’s police chief for crying.

Political Correctness?

Syndicated radio talk show host Michael Savage added to the furor last month when he charged that doctors and drug companies are overdiagnosing autism and said, “I’ll tell you what autism is: In 99 percent of the cases, it’s a brat who hasn’t been told to cut the act out.” Several major companies pulled their advertising from Savage’s show.

Lisa Jo Rudy, who is the mother of an autistic child and writes and consults on autism, said Savage’s words were “truly nasty abd hurtful.” At the same time, Rudy said the talk show host has raised awareness of some of the frustrations of parents of autistic children and the wider public too.

Rudy said there are times when parents should not put their children in situations where they might be disruptive. “Some of these stories really are the ones where the general public can absolutely identify with the other side of the story,” Rudy said

Jason Goldtrap of Davenport, Fla., said too many people diagnosed with autism are out and about in public because of political correctness. Goldtrap, 40, has two nephews, ages 3 and 21, with autism, and said the older one has become so violent at times that the police have been called.

“I certainly sympathize with all the families who are in this situation,” Goldtrap said. “But when we got away from the concept of institutionalization in America, we lost an important element of trying to maintain civility. There is a place for mental institutions.”

Autism is a mental disorder that inhibits a person’s ability to communicate and can include a host of complications. It varies widely in its severity. Some people are well-behaved; others are prone to outbursts or self-abusive behavior such as biting and head-banging.

A recent study by the Centers for Disease Control and Prevention estimates that one out of every 150 U.S. children over the age of 8 is autistic or suffers from a related disorder. About 560,000 Americans under 21 are believed to have autism.

Many parents say that their autistic children are largely misunderstood, that they can’t help it when they act up, and that need interaction with the public.

Public Forays With Care

However, some parents wonder how much understanding can be gained in grocery stores, churches, or other public places.

Nikki Wilmoth-Williams of Rockport, Texas, said certain high-traffic areas are off limits for her autistic 14-year-old son, Zach.

“I’m an advocate for my child, but we all have to play on the same playground,” she said. “It’s not about clearing the playground so my child can be on it.”

Rudy advises parents of autistic children to arrange forays out in public with care, which might mean five  mintues in the grocery store instead of 45 minutes.

Joe Schmitt, a Minneapolis lawyer who has often defended employers against claims they discriminated against disabled employees, said people who object to certain accommodations might be viewed as insensitive to those with autism or other disabilities.

“They usually really do care, but they have to weigh the considerations of others,” Schmitt said.

Sandy Boyles, whose 18-year-old son, Walter, is autistic, said that when she began attending First Reformed Church in New Brunswick, N.J., she didn’t bring him along, because in other churches he would run up and down the aisles screeching.

“She was afraid of being ostracized. I told her, ‘So what? Bring him anyway,’” the Rev. Susan Kramer-Mills said.

Eventually, the small congregation revised its services to Walter’s liking. Worship used to start softly and build to a crescendo. Now, it starts with more noise.

“I have to be careful because sometimes he’ll do a fast movement or run,” Boyles said. “But the other members aren’t as scared as I am.”

End of Story

=====================================================================

My Response:

Being the parent of an autistic son I read with great interest the article in the Sunday paper dated 8-17-08 titled: “Society, autistic youngsters face a balancing act”. To begin with, the days of institutionalizing our children are over. These children are extremely intelligent and deserve their shot at the good life the same as any other neuro typical child does. So society had better adapt to that fact.

A few corrections must be brought forth as well. To begin Autism is not a mental disorder. Autism is a biological disorder that affects the brain, the digestive system, and causes issues with sensory integration. It is a combination of all these issues that cause the behavior problems seen in public. Another area where the article is incorrect was the number of autistic individuals under 21, that number should be 1.5 million not 560,000.

A big problem with an autistic child’s behavior in public is because these issues are not addressed in the school system. My son goes to the Vista (www.thevistaschool.com) school in Hershey. Vista is a school for children with autism. As part of the behavioral component Vista has what is called CBI (community based instruction), where what the child is taught in order to control negative behaviors, is transferred to the community. Prior to my son enrolling in Vista we couldn’t easily take him out to a store or a restaurant. That has dramatically changed for the better. We can now take him anywhere. So if these children’s behaviors are going to be improved upon then the schools need to adopt a program for dealing with behavioral issues in the community.

It is truly a shame that the Patriot didn’t do its own piece and interview local parents on this issue instead of taking it from the AP wire as a means to fill a space in the paper.

Respectfully,

Deborah A Delp

(Address and phone number omitted for security reasons.)

 

P.S. Your word limit of 200 is rather low and I could go into much greater detail on what autism truly is. Check the links in my signature below to get a real wake-up call.

Then of course I had my links to this blog, my website and my group in my signature.

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