Cruising for Kyuss: Raising awareness for autism

(Photo by Kris Todd) Sporting a blue Autism Speaks puzzle piece on her blouse and a beaded bracelet on her wrist, Leah Hintz is raising awareness for her son's disorder. [Click to enlarge]

Daily Reporter Staff

April, which has been designated National Autism Awareness Month, seems the perfect time for Damon and Leah Hintz of Spencer to announce that they're the proud parents of two children: Kyuss will mark his sixth birthday in July and Miles Hintz will turn 18 months old on May 3. The eldest of their two sons was diagnosed with autism as a 3-year-old.

While autism spectrum disorders can usually be reliably diagnosed by age 3, new research is pushing back the age of diagnosis to as early as 6 months. Parents are usually the first to notice unusual behaviors in their child or their child's failure to reach appropriate developmental milestones. Some parents describe a child that seemed "different" from birth, while others describe a child who was developing normally and then "lost skills."

In retrospect, Leah can recall comments made by her mother- and father-in-law about Kyuss' lack of speech before he turned 2.

"We just blew it off," she said, noting he was their only child at that point and they had nothing to compare with.

Following a woman in Kyuss' preschool suggestion for them to investigate speech therapy for their son, Damon and Leah sought assistance from an Area Education Agency representative who worked with an autistic child in the Boone area. Two weeks later, Kyuss was placed in a different daycare setting, one that better fit his special needs.

The Hintz family moved "back home" to northwest Iowa the following year, nearer family in Fostoria and Lake Park.

Treatment of the disorder

Autism, the fastest-growing serious developmental disability in the U.S. today, costs the nation over $90 billion per year, a figure expected to double within the next decade. While President Bush signed the Combating Autism Act into law in December 2006, which authorized nearly $1 billion dollars in expenditures over five years beginning in 2007, its funding remains an ongoing battle between Congress and the president.

While there are currently no effective means for preventing autism, there is also no known cure or fully-effective treatment. Research, however, does indicate that "early intervention in an appropriate educational setting for at least two years during the preschool years" may result in improvements.

Effective programs often focus on developing communication, social, and cognitive skills. Damon, a stay-at-home father, takes Kyuss to therapy twice a week.

The Child Health Specialty Clinic located in Spencer Hospital, Leah noted, has been a good resource for their family.

"We're continually looking for a new avenue" in therapy, she said, noting that something specific might work for a period of time but become ineffective after a while. As Kyuss is currently on medication, the Hintz family is also exploring the effects a gluten- and casein-free diet may have on autism.

Every autistic individual is unique and experiences different symptoms. Leah explained their son, for example, finds changes and transitioning between things difficult. Kyuss is also "messy, and not very organized." The 5-year-old lays on the floor when he's upset because he can't articulate what he's feeling. She indicated since he's a very visual learner, they find using the Picture Exchange Communication System helpful because it allows him to communicate via pictures.

Leah reported their eldest son also doesn't understand that moving cars and running into the street may cause him harm. The second time Kyuss "ran away" last summer, he crossed Grand Avenue at 6 a.m. on a Saturday morning. He was found banging on the door of Video Warehouse, trying to get in. Damon, the first one to realize he was gone, raced after him, realizing Kyuss was probably on a mission because he'd been saying "video store" the last couple days.

Shortly after this incident, a Project Lifesaver tracking band was securely placed around his ankle. The electronic tracking system hooks wearers into a database and allows law enforcement officials to aid individuals and families affected by Alzheimer's disease and related orders, such as autism and Down's Syndrome.

As the Hintz family works to raise awareness about this disorder, it's also seeking ways in which to raise funds for research. Damon, Leah, Kyuss and Miles are planning to take part in a second walk around Gray's Lake Park in Des Moines on Saturday, June 7. Their team, named Kyuss' Cruisers, raised over $1,700 during last year's Walk Now for Autism event, which is sponsored by Autism Speaks. According to Leah, they're also contemplating participating in an Oct. 11 walk in the Sioux Falls stadium.

The Nelson Jewelry employee is also putting her vocational skills to use in the quest for research funds. She and Kate Nelson, whose nephew has also been diagnosed with autism, are designing blue and white beaded bracelets for sale. Half of all the proceeds raised will be earmarked for the June 7 walk in Des Moines.

* While more information on autism may be found at www.autismspeaks.org, additional details on Autism Speaks' Walk Now for Autism events throughout 2008 may be located at www.walknowforautism.org. Bracelets may also be ordered at Nelson Jewelry, 409 Grand Ave., Spencer, or by e-mailing sales@nelsonjewelry.com.

QUICK FACTS

Q. What is autism?

A. This complex neurobiological disorder typically lasts throughout a person's lifetime. It is part of a group of disorders known as autism spectrum disorders (ASD). Today, 1 in 150 individuals is diagnosed with autism, making it more common than pediatric cancer, diabetes and AIDS combined. Autism impairs a person's ability to communicate and relate to others. It is also associated with rigid routines and repetitive behaviors, such as obsessively arranging objects or following very specific routines. Symptoms can range from very mild to quite severe.

Q. What are some of the "red flags" of autism?

A. While there are few "absolute indicators," the following "red flags" may indicate a child is at risk for atypical development, and is in need of an evaluation:

* No big smiles or other warm, joyful expressions by six months or thereafter.

* No back-and-forth sharing of sounds, smiles, or other facial expressions by nine months or thereafter.

* No babbling by 12 months.

* No back-and-forth gestures, such as pointing, showing, reaching, or waving by 12 months.

* No words by 16 months.

* No two-word meaningful phrases (without imitating or repeating) by 24 months.

* Any loss of speech or babbling or social skills at any age.

Q. Who is diagnosed with autism?

A. A new case is diagnosed almost every 20 minutes. While it occurs in all racial, ethnic, and social groups, it is four times more likely to strike boys than girls. One in 94 boys is on the autism spectrum.