Wednesday, August 13, 2008

Public response to autistic behaviors - living in a small world

Dave Kolpack's editorial on public responses to disruptive children begins with the phrase "politically incorrect". That's best read as "truth that offends the weak minded". He gets a little better, but not much better.

Emphases mine.
Disruptive behavior by autistic children stirs debate, brings forth conflicted feelings
By DAVE KOLPACK , Associated Press
August 13, 2008

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 both 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 Bertha, 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 noises and nearly ran over people while bolting from the church after services.

Carol Race, Adam's mother, said the congregation's claims were exaggerated. But in 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 have 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....

...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.

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 and 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 may 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."

Goldtrap added: "If it were up to me, he would be in an institution. My brother doesn't agree, and that's his prerogative." He declined to identify his brother, saying, "I don't want to start another argument."

.... Many parents say that their autistic children are largely misunderstood, that they can't help it when they act up, and that they need interaction with the public...
Asperger's tends to run in genetically related families, and it's associated with categorical rigidity and intolerance of disruption. I wonder if Mr. Goldtrap might carry a diagnosis he's unaware of.

I think what we're seeing here is the graying of America. The boomer's are now over in their 50s and 60s, and they're pretty removed from their child rearing days. Now they have little tolerance for normal children, and less for children with disabilities.

Sure it's hypocritical and selfish, but these are primates we're talking about.

As usual, there are no simple answers. Today, while visiting a coffee shop on a regular outing with one of my sons, a staff person pulled me aside. She and a colleague were compelled to tell me how much they loved my son's calm manners, his smile and his quiet charm. They have no idea of his disabilities, it was genuine praise for a "well behaved child" that I gratefully accepted.

They've never seen him meltdown. Probably they never will -- the setting works for him. If they did, then maybe they'd put him in the disruptive autistic-keep-indoors child category. He's still the same person of course.

Another child is often praised for his charm and behavior; but at home he routinely pushes our extreme parenting skills to new limits of invention. I still remember, at a thankfully much younger age, a spectacular meltdown on an airplane ...

Of course I also remember our quite normal daughter awakening after a flight when Mum had left to get a cart -- her shrieks could be heard on incoming flights.

Life's complicated. If you retreat indoors, the children don't get any practice with the real world. You'll never discover that seemingly utterly insane road trips work inexpicably well for one set of kids.

On the other hand, if your child hits the wall in a public setting, you may have to explain to the nice officer why you're physically restraining a screaming child. This is even more fun if an adopted child doesn't actually resemble their parent; mercifully we've somehow missed this experience so far. In the days that sort of thing happened to me people were slower to call the police than I'd have expected.

We don't go to church. We never did find a place that would accept both me (effectively an atheist) and our kids. The intellectual churches tend to have gray haired parishioners who like things quiet, the loud and tolerant churches can't deal with an atheistic snake in the grass.

It's a small world, and getting smaller all the time. Do your best, and if your son or daughter goes ballistic near me you'll have at least one sympathetic bystander.

The Tropic Thunder boycott

Here's the email from the Down Syndrome of MN executive director:
By now you may be aware that Tropic Thunder, a film which depicts people with developmental disabilities in a derogatory and disrespectful manner, will open in our area tomorrow evening.

Despite aggressive attempts to get Dreamworks-Paramount to modify the offensive content, the film with its offensive and hurtful stereotypes about people with disabilities has debuted intact. The Down Syndrome Association of Minnesota, therefore, joins the National Down Syndrome Congress, National Down Syndrome Society, Special Olympics and Arc of the United States and other disability organizations in calling for a boycott. One of the best ways to send a message to Hollywood is to cut into their ticket sales.

Considering what we ask, we must be completely honest. While trusted members of our community were allowed to preview the complete film, all that is available generally is a promotional trailer. That brief glimpse leaves a nasty taste, but to be fair is not the full movie.

We have elected to trust our colleagues who have seen the full film. You can read the reaction of one, journalist Patricia Bauer, on her blog at www.patriciaebauer.com Based on what Patricia says and the reports of other leaders in both the Down syndrome and larger disabilities community, we reiterate our call for a boycott of TropicThunder.

Special Olympics USA has taken a bold lead on this issue calling for the elimination of the term "retard” ­ or the R-word as they put it ­from popular language. Language is a powerful tool. Individuals with developmental disabilities are not "retards"; they are our sons, daughters, friends, employees, neighbors, classmates; people deserving respect.

It is quite easy to avoid the film, however, if you agree we need to make a loud and clear statement ­ about Tropic Thunder and the larger issue of disrespectful, prejudicial language ­we urge you to both join the boycott and spread the word among your friends, neighbors and co-workers.

Finally, I would direct your attention to a short video produced by Will Schermerhorn of [Blueberry Shoes Productions]. This very short video was put together for the Arc of Northern Virginia. It is a beautiful counterpoint to “Tropic Thunder”.

Kathleen Forney
Executive Director
Down Syndrome Association of Minnesota
Patricia Bauer has a good sample of responses to the movie, both those defending it as a parody of Hollywood and those offended by the "R" word.

Probably the best comparison is the use of the "N" word in film -- a matter of debate when used by black directors; offensive when used by white directors. By that metric the movie is at best gratuitously offensive, at worst cruel.