Matt Tuthill

Published in the Bennington Banner on August 17, 2006

LOCALS TACKLE AUTISM TOGETHER

BENNINGTON — Her daughter was 3 years old and had yet to say a single word. Not even some small semblance of a word. No cooing, no yelling, no screaming. Every day she woke to an eerily silent 3-year-old girl, who simply sat and pointed at the things she wanted – and occasionally perused the newspaper. One day the mother opened the fridge, reaching for her daughter’s milk, when her heart nearly froze. She could barely process what just happened. She had never heard her daughter’s voice before, but without looking, knew her daughter had finally spoken her first words:

“Actually, mommy, I think I’d rather have my juice now.”

How her daughter came to utter what would be a tremendously complex sentence for a girl her age as her very first words, she didn’t know at the time. But nine years later she at last discovered her daughter suffers from autism, a complex neurological disorder that, according the Autism Society of America, afflicts 1 in every 166 children born in the United States. Children with autism often have awkward motor functions and can have great difficulty in expressing themselves.

Many individuals with the disorder exhibit abnormal sensitivity to seemingly random stimuli. Different odors or sounds can often make an autistic person vomit.
Individuals with autism also often have special gifts and are able to recall huge passages from books without trouble. Others can perform complex mathematical equations.
As it turned out, the woman’s daughter who finally asked for juice was an autistic child who had a way with words. She hadn’t just been looking at the pictures in the newspaper. She was reading the articles.

This story is just one of dozens of other-worldly anecdotes recited at Bennington’s support group meeting for parents of children with autism on Tuesday evening. About 15 area residents are members of the support group, which discusses every aspect of dealing with the neurodisability, for which there is no known cause or cure. It is a medical mystery and coping is all these parents can do, and it doesn’t sound easy.

David and Wendy Ballou are the group leaders and have been gathering parents together for monthly discussions for nearly a year. At the group meetings, they brainstorm with other parents about every aspect of caring for a child with this unique condition. From finding specialized day care and summer camps to special education and physical therapy, these parents have become expert researches by necessity.

The Ballous spoke openly about raising their son, Adam, who is 5 years old and falls within the autism spectrum with a disorder known only as PDD-NOS, which stands for Pervasive Development Disorder-Not Otherwise Specified.

Other parents in the group agreed to speak about the difficulties in raising an autistic child on the condition of anonymity. Their children face enough prejudice, they said, without their names appearing in the newspaper.

Each child has different levels of severity of the disorder and fall within varying degrees of ASD, or Autism Spectrum Disorders. The low end of the spectrum includes the non-verbally autistic and mildly retarded. The high-end of the spectrum includes high-functioning individuals with sometimes erratic social behavior.

Prejudice

Awkward social behavior is what often makes these children the target of insults and jokes at school. Autistic children tend to take things literally, one mother said, explaining that her teenage daughter attending Mount Anthony Union High School believes that people who die in fictional television shows are actually dead.

Her daughter is the same girl who knew how to read before she could speak. And when she wants to speak to you, she often gets right in your face to do so. Moreover, when she’s in pain, she doesn’t know how to verbalize what she’s feeling. The pain then manifests itself in short-tempered misbehavior that’s often misunderstood, to say the least. One could only imagine what life was like before her daughter began taking pain medication for rheumatoid arthritis.

Another parent in the group said she keeps her sons, both of whom fall into the autism spectrum, away from playgrounds. After years of reciting the same conversation, she finally grew weary of explaining to other parents what was different about her child.

Lack of service

While prejudices and the cruelty of other children are incredibly daunting, it is finding the right kind of special services that has proven the most difficult for the parents in the support group.

The Southwestern Vermont Supervisory Union provides the area’s autistic youth with an elementary program called ACORNS, which stands for Autistic Children with Opportunities for Reaching New Success. While David and Wendy Ballou say the program has been excellent for Adam, the program ends after sixth grade. Adam is only five, but the Ballous have begun to worry about the future.

Other parents, like those of the teenager attending MAU, say parents of children with autism face a enormous gap between the medical and educational communities.

“This is a medical condition with an educational treatment,” one mother said, explaining her frustration with a situation where she said each system is pointing the finger at the other. Doctors have told her that her son needs 25 to 30 hours of one-on-one interaction with a specially trained teacher. The school district provides about an hour a week, the parents said.

George Carpenter is the SVSU’s assistant superintendent of special services. He refuted the idea that the two groups are not working together.

“I’m not sure, when the parents talk about a gap, what they’re referring to,” Carpenter said.

“Whenever we deal with youngsters with disabilities, there are different ways of approaching it. … I wouldn’t presume to tell a doctor what to do to help a child get better, just as I don’t think a doctor would presume to tell a teacher how to help a child.”

The SVSU, Carpenter said, is doing all it can to help the area’s autistic population, which he estimated at about 50 students. And though he believes the education system knows what’s best for children in the classroom, the SVSU frequently consults with members of the medical community, seeking specific advice in regards to autism.

The parents of the group say they’ve heard the SVSU’s defense before, and they don’t buy it. Parents of autistic children across the state are apparently on their side.

The state Department of Education released the “Vermont Interagency White Paper on Autism Spectrum Disorders” in March. The paper states that the result of a statewide survey of parents of children with autism showed the vast majority of parents to be unhappy with the services their children were receiving. Carpenter said he’s read the paper and doesn’t believe it applies to the SVSU.

“I think that the state and the SVSU are in two different places,” Carpenter said. “The SVSU is doing a great job with our autistic population. … The parents I’ve spoken to are overall pleased with the services.”

Finances, Carpenter added, are always a concern and sometimes limit what the SVSU is able to provide.

“You’re always going to look at bottom line dollars that you’re spending,” Carpenter said, explaining that one-on-one time between specially trained teachers and students is incredibly expensive. “Sometimes people assume that if you create a one-on-one situation then that’s an ideal situation, and I don’t think that’s necessarily the case.”

Making the case

Parents say it isn’t their opinion that their children need one-on-one time, but rather a doctor recommendation. Even so, many of the parents in the support group say their insurance doesn’t help with the medical costs associated with autism on the basis that autism treatments are unproven. To help fight for the services their children need, the group has invited Bennington attorney Lon McClintock to next month’s meeting, which will be held in the old barn on Monument Circle.

McClintock says he has experience in helping parents of children with all kinds of disabilities get the services they deserve. McClintock doesn’t represent anyone in the group, he said, and that his presence at next month’s meeting is simply to give advice. He said he’ll be advising parents on how to make convincing arguments in getting special services for their children.
McClintock said some of the families he’s advised have been successful in getting schools to pay for special services for their children. None of those families, McClintock added, had children within the SVSU.

Doubt

Many of the parents in the group find themselves struggling with the idea that they may have caused their child’s autism during pregnancy, despite there being no known cause of the disorder.

Even so, one mother expressed concern that she had underwent monthly ultra-sound check-ups while pregnant, something she didn’t do with her other children. Other parents said they lived in close proximity to an area factory while pregnant and often wonder if something from the factory may have caused the disorder.

Theodore L. Johnson, MD, said the doubt the parents feel is understandable, but that they can rest comfortably. There is likely nothing the parents did to cause the autism, he said.

“There is no evidence that ultrasound (could harm an unborn child),” Johnson said. “One has to be incredibly sympathetic to parents of kids with autism. We always want to find out what we could do to make our children’s lives better.”

Recent studies, Johnson added, have indicated that autism may be genetic, but emphasized that there is still no known cause.

“If, in fact, this is a genetic phenomenon, then there is little to nothing that we can do,” he said.
For more information about the parent support group or to join, call Wendy Ballou at 447-5716.

From the Bennington Banner – Thursday, August 17