OPINION: Awareness, action provide hope for autistic children, their parents

Parents of autistic children have extremely stressful lives, and their numbers are growing significantly based on new research and information gathered by autism experts.

One in 100 children is affected, Autism Society of America CEO Lee Grossman has told interviewers based on research he has seen and discussed. Boys are four times more likely to be diagnosed with the behavioral disorder than girls.

The stinging reality of autism brings with it a series of parenting issues, a situation sure to be compounded by the growing numbers.

The disorder tests patience and resolve in raising the children, both at home and in school. Costly treatments and therapies often drain parents, not to mention their bank accounts. And there’s no guarantee of a cure.

No wonder families living with autism often feel a sense of hopelessness and isolation.

In one sense, though, South Carolina parents are extremely lucky. They live in communities filled with advocates for special needs children, including Florence and throughout the Pee Dee. We hope knowledge of autism will raise awareness and assist parents in coping with their day-to-day labor of love.

Two years ago, South Carolina became the third state to pass a law requiring insurance companies to cover autism treatment. Fifteen states have enacted similar legislation, and we support federal legislation as part of health-care overhaul to mandate insurance coverage.

Ryan’s Law went into effect in 2007, requiring insurance companies provide as much as $50,000 a year for behavioral therapy up to the age of 16. More important, insurance providers cannot deny medical care to children because of their autism.

Before passage of Ryan’s Law, the state was filled with stories of parents who were spending their life savings on treatment for their children. The process seemed arbitrary and unfair and created stress and undue anxiety in thousands of families.

A South Carolina law professor and attorney, Lorri Unumb, was instrumental in convincing legislators to pass the law. When she wrote the first draft of the bill, she and her husband were spending $80,000 a year on her son’s treatment.

The effect of Ryan’s Law has been positive step for families struggling to cope with developmental disorder. Doctors, instead of teachers, are diagnosing children with autism.

As a public-policy issue, Ryan’s Law has shifted some of the burden from the government to the health-care industry. Insurance companies used to think of autism treatment as an educational tool, not a medical condition.

The more autistic children receive intensive treatment, the more likely they’ll be higher-functioning adults capable of living outside the home.

By definition, autism is a developmental disability that appears during the first three years of life. The S.C. Autism Society says more 26,000 people have disorders that fall under the autism umbrella.

The Centers for Disease Control in Atlanta says autism and its associated behaviors occurs in 1 in 150 people, but the Autism Society of America CEO says the figure is expected to rise to 1 in 100.

With Grossman’s revelation, the importance of treatment, therapy and education in the formative years becomes paramount.

Demand for research into the causes of autism has never been higher. Researchers have been unable to find a gene or a single trigger that causes it to develop.

Local residents have expressed concern to us over the red tape involved in getting state services. We’re worried the growing numbers of children with autism will slow the delivery of state services. Parents cannot wait months and years for decisions on whether to provide state services or access to funds under the Tax Equity and Fiscal Responsibility Act of 1982 (TEFRA).

The state’s Department of Disabilities and Special Needs has an autism division, at least keeping concerns on the front burner.  The autism division must be an advocate for parents already frazzled by slow-moving bureaucracy and the puzzling disorder.

The growing numbers underscore the need for awareness and action. The precious children and their loving parents deserve nothing less.

— Unsigned editorials represent the views of this newspaper. Editorial Board members are Mark Laskowski (regional publisher), James Bennett (regional editor), Sam Bundy (sports editor), Kimberly Ginfrida (news editor), David Johnson (regional circulation director), Charles Tomlinson (Lake City News & Post editor) and Jackie Torok (metro editor).