Living with autism

April 27, 2003|by KATE COLEMAN

When he was 20 months old, Luke Hill could say the alphabet - not in order - but he knew and could recite some of the letters. He also could count to 20, says his mother, Cindy Hill, 39.

Luke talked, but by the time he was 2, he lost his ability to communicate.

"When they lose their language, you lose your child," Hill says.

Luke, 3 1/2, has autism.

People had approached Hill last spring, asking her if she thought Luke might have a hearing problem or autism. Luke would "zone out," Hill says.

His hearing test was fine, and the ear, nose and throat specialist also questioned whether autism might be a possibility.

Cindy and her husband, Larry Hill, were able to have Luke evaluated, and the diagnosis of autism was made in early December 2002.


"It was very hard to hear," Cindy Hill says.

Autism is a biological disorder - a developmental disorder - that begins before age 3 and lasts a lifetime, according to information on the Web site of the National Institute of Child Health & Human Development,

Autism affects communication, both verbal and nonverbal. It causes problems in relating to people. Most people with autism have problems with routines or repetitive behaviors, such as repeating words or behaviors over and over or obsessively following schedules, having very particular ways of arranging their belongings.

At one time, bad parenting was thought to be the cause of autism. It is not, but enough people are still unaware to have April designated as National Autism Awareness Month.

Autism is a neurobiologically-based condition, says Dr. Stephen H. Mott, chief of the division of pediatric neurology and director of the Center for Neurodevelopment and Neurocognitive Services at Georgetown University Medical Center in Washington, D.C. Autopsies have shown that the brains of people with autism are different. Research is likely to identify a genetic cause, he says."There's a family constellation."

Vaccines, combinations of vaccines, preservatives in vaccines - are thought by some to be the cause of autism, but so far, there has been no conclusive, scientific evidence to prove those theories, according to the National Institute of Child Health & Human Development.

Autism, which affects four times as many boys as girls, is the most common of a spectrum of similar disorders called Pervasive Developmental Disorders, affecting an estimated two to six of every 1,000 people, according to the Autism Society of America (

Lois Noland of Hagerstown has been dealing with her son's PDD-NOS - Pervasive Developmental Disorder-Not Otherwise Specified - for more than a dozen years.

Jacob "J.J." Noland, now 15, was 3 when he was diagnosed. Noland says she had heard of autism, but she really didn't know what it was.

President of the Washington County Autism Society, she has learned a lot about the disorder and how to live with it.

J.J. is enrolled in Autism Waiver, a program of the Maryland Department of Health and Mental Hygiene, which started in Washington County in July 2001, says Ginger Harne, who is the program's service coordinator in Washington County. Autism Waiver is administered by ARC of Washington County.

Children who meet eligibility requirements may receive out-of-school services, which can include intensive individualized support, group services, including horseback riding and swimming, music therapy. Families can receive training, respite and funds to help with environmental adaptations - fences and other safety measures designed to protect the child with autism.

J.J. attends weekly sessions with Genavieve Lundblad, a music therapist in Hagerstown. She works to find his individual strengths, what works for him.

"Hello, J.J.," Lundblad sings.

"Hello, Miss Gena," J.J. sings back - in his own way.

Lundblad has red and green square cards. She asks J.J. "Which one can I use to go?" she asks.

After a few attempts, he chooses the green card.

"What would you like to do first," she asks.

"Sing a Song of Sixpence," is J.J.'s rapid-fire response. J.J. and Lundblad play the piano and drums, beating out rhythms together.

Later, Lundblad turns to a boombox, and chooses music of varying tempos from the B-52s' rocking "Love Shack" to Norah Jones' "Come Away With Me." The exercise is an attempt to help J.J. learn to become calm within seconds, she says.

J.J. and Lundblad dance together to the different beats of the songs, sometimes holding hands, often with eye contact. "That's really important - the human connection," Lundblad says.

Having a child with autism is not easy.

"Oh, my gosh, it's hard," Mott says. It can be devastating. He's seen many families "bust up."

Looking back, Cindy Hill recalls behaviors that could have been indications of autism. "Luke never wanted to be really held," she says. She struggled to nurse him for three months, and then it became impossible, she says.

Armed with the diagnosis, the Hills went into action for their son.

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