By Rod Hansen
Staff Writer

Goffstown News/Rod Hansen Neil Hiltz of Goffstown, a fourth-grader at Bartlett Elementary School, displays a vacuum from his vast personal collection. His autistic condition led him to be fascinated with vacuums of all kinds.

Autism stories • Bedford: Loud, unpredictable noises frighten boy • Bow: Teen with autism defies all odds • Goffstown: Like a switch was turned off • Hooksett: Family appreciates joys, deals with disappointments • Pelham: Autism offers boy a creative impulse

Autism awareness walk to take place May 13 AUBURN – The Autism Society of New Hampshire is sponsoring “A Walk in the Sun,” an autism awareness nature walk, on Saturday, May 13, at the Audubon Center at Lake Massabesic. Registration starts at 9am, and the walk begins at 10am. Participants may walk one mile or three. No pets, please. For directions, visit NHaudubon.org. All donations are tax deductible and stay in New Hampshire to support local families. For more information, visit NHautism.com or call 603-679-2424.

What is autism? By Darrell Halen Staff Writer Autism is a complex developmental disability that impacts a person’s brain functions and, therefore, his or her communication and social interactions. This neurological disorder typically appears in a person’s first three years. “Typically, between (the) ages of 2 and 3, you start to notice that the child is not communicating effectively or there’s uneven skill development,” said Marguerite Tompkins, a preschool services teacher for the Pelham and Windham school districts. Autism is known as a spectrum disorder. It affects each person differently and traits vary from mild to severe. According to the Autism Society of America, an autistic person may exhibit any combination of the following symptoms: aggressive behavior, self-injurious behavior, resistance to change, difficulty expressing needs, repeating words or language instead of normal language, gesturing and pointing instead of speaking, throwing tantrums, wanting to be alone, showing little eye contact, dislike of cuddling, inappropriate attachment to objects, lack of fear of dangers, overactivity and underactivity, uneven gross/fine motor skills, unresponsiveness to verbal cues, laughing, crying and showing distress for no apparent reason, unresponsiveness to teaching methods, playing oddly, spinning objects, and apparent oversensivity and undersensitivity to pain. Dr. Leo Kanner, a psychiatrist who observed children, officially identified autistic children in 1943. Before Kanner’s work, such children would have been labeled as emotionally disturbed or mentally retarded. Society’s understanding of the disorder has grown since Kanner’s contributions but there are still many unanswered questions about it. There is no single known cause of autism, according to ASA. No gene has been identified as being responsible but experts believe the disorder is due to abnormalities in brain function and structure. Differences in brain shape and structure have been found when comparing autistic children and non-autistic kids. Experts at the ASA believe children are born with autism or are born with the potential to develop it. The role of genetics is also supported by research that many autistic people come from families with a history of autism or related disabilities. A study by the Institute of Medicine in Washington, D.C., ruled out a relationship between the measles/mumps/rubella vaccine and autism. It also ruled out a link between thimerosal and autism. Thimerosal is the ingredient in the vaccine many suspect as the cause of autism. Nevertheless, many people still believe the vaccine theory, and there is a class-action lawsuit in federal court regarding that theory. As many as 1.5 million children and adults in the United States are believed to be autistic, said the institute. The milder the symptoms, the likelihood is greater that it will take longer for the problem to be recognized, Tompkins said. There is no medical test for diagnosing autism. Professionals make a diagnosis based on a person’s behavior, communication and development levels. More children are being diagnosed with it, but Tompkins said there’s speculation as to why that is. But just because a person has autism doesn’t mean they can’t learn and be productive. Kids don’t outgrow the disorder but their symptoms will lessen as receive treatment and develop.

Neil Hiltz likes to ask questions. Lots of them.

The 10-year-old Bartlett Elementary School fourth-grader might ask, in rapid-fire succession, the make, model and year of a visitor’s car; why the car has four doors rather than two, and how fast the car can go on the highway.

He might switch topics entirely, and ask if the visitor has any brothers or sisters. How old are they?

Neil Hiltz is polite and respectful, and touchingly affectionate toward his mother, Jayne, and his sister, Elizabeth.

However, despite his impressive vocabulary and gentle demeanor, something sets Neil apart from other 10-year-old boys.

Neil Hiltz is autistic.

“Autism is a disorder in which a young child cannot develop normal social relationships,” according to the Merck Manual of Medical Information.

The definition continues, a typical autism patient “uses language abnormally or not at all, behaves in compulsive and ritualistic ways, and may fail to develop normal intelligence.”

It’s a condition Jayne Hiltz acknowledges can be difficult and sometimes frustrating.

While it may explain Neil’s endearing qualities such as his curiosity and innocence, it may also lie behind more confounding aspects of his personality.

For example, Neil is fascinated with vacuum cleaners – there are 21 of them tucked away in closets and odd spots throughout the house. He prizes the appliances, and eagerly shows off his collection. Relatives often send him vacuum cleaners as gifts.

Neil also loves shampoo. With all their different colors and fragrances, Neil keeps bottles of the hair care product by the dozen.

It’s a perplexing condition, which Jayne said probably started in Neil’s 13th month of life, when the boy abruptly withdrew into himself. Neil had been making normal childhood inroads toward walking and talking, when his progress came to a sudden and heartbreaking stop, Jayne Hiltz recalls.

“It was as if someone turned off a switch one day,” Jayne writes in a short narrative of her son’s life. “Our happy chatty boy did not talk any more.”

The fears of Jayne and C.J. Hiltz were confirmed when Neil was diagnosed with autism at the age of 28 months.

Jayne said this change in her son occurred right around the time of Neil’s first round of childhood vaccinations, and that the two events might be more than a coincidence.

The Hiltz family is part of a class action lawsuit filed in U.S. Federal Claims Court in 2002 claiming childhood vaccinations led to autism in many cases.

The suit, titled Various Petitioners vs. the Department of Health and Human Services, says the thimerosal used as a preservative in vaccinations contains dangerous levels of mercury and may act as a neurological toxin.

“It’s kind of a big topic in the autism community,” Jayne Hiltz said about the vaccination controversy. “I can say Neil’s autism isn’t a genetic condition – no one else on either side of our family has it.”

The Hiltz family is being represented by the law firm of Shaheen and Gordon of Durham in the lawsuit.

Jayne Hiltz said she hopes the lawsuit will provide answers to why her son, and thousands of other children, suddenly fell into the grip of this condition.

“As parents, we’re looking for answers,” Jayne Hiltz said. “My son’s doing very well, but as an adult we don’t know if he’s going to be independent.”

Although Neil’s future independence remains an open question, members of his family, his school community, and mental health professionals are working to ensure he gets the most out of life today.

Jayne Hiltz credits early efforts to help her child with his current progress. Neil was involved in a home-based schooling program from the time he was 3, went to preschool for socialization at the age of 4, and continues to see a psychologist, a neurologist and receives counseling through the Mental Health Center of Greater Manchester.

Neil also has been partially integrated into the classroom at Bartlett, where he works with one-on-one aid Sue Ward and autistic program teacher Kathleen Birdsey.

“It’s a team effort,” Jayne Hiltz said, noting that she keeps open communication between herself and the school about Neil’s progress. She said Ward will continue to work with Neil when he goes to middle school.

Neil’s education is typical of the 14 students in the school district diagnosed with autism, said Assistant Superintendent Stacy Buckley. Each student has an individualized education plan in which students are assessed on academic and social goals, with progress reports generally sent home around the time of report cards, Buckley said.

The social aspects of the individualized education plans are often just as important as the academic goals, particularly as students grow older, Buckley said. This can be especially true among students with Asperger’s syndrome, a less severe form of autism in which the patient may not understand the finer points of social interaction.

“Sometimes, it’s just a matter of showing (the student) about the give-and-take of conversations,” Buckley said.

“You might have to teach them that another person might not be interested in talking about trains for an hour,” Buckley said.

Jayne Hiltz credits the social and academic network behind her son for much of the boy’s progress. She said he is making strides both socially and academically, and said everyone from school administrators to Neil’s own sister Elizabeth, 13, play important roles in his development.

This development can be seen in all areas of Neil’s life.

Events that used to be traumatic now pass nearly unnoticed, Jayne Hiltz said. For example, she said a recent trip to the dentist did not prove nearly as distressing as she might have expected. After the visit to the dentist was over, Jayne rewarded her son the best way she knew how.

She took him to Wal-Mart to look at vacuum cleaners.