Autistic Alabama kids lack many services, report says

As a growing number of parents face the challenges of raising a child with an autism spectrum disorder, Alabama has a "significant weakness" in providing services for these families, according to statewide research.

The Alabama Autism Task Force released a preliminary report on Wednesday, creating a bleak picture of confusion and frustration these families face. In Alabama, about 30,000 people have autism spectrum disorders.

The national Centers for Disease Control and Prevention consider the disorders an "urgent health problem in need of targeted public health action." Autism spectrum disorders involve impairments in communication and social skills and a restricted range of activities and interests. The degree of impairment can range greatly depending on the individual.

In Alabama, children with autism lack the services provided in nearby states and across the country, the task force found. On average, children in this state are not diagnosed with autism until they are 4½ years old, even though many parents start reporting concerns to health care providers in the first 18 months of life.

Nationally, children are diagnosed before their third birthdays.

Families wait six to eight months for an appointment with an autism spectrum disorder-trained physician in Alabama, even longer for a diagnosis, health providers reported. Precious time for early intervention is lost, the preliminary report stated.

Some families choose to seek help in other states, such as Florida, where there are more autism specialists. But then they return to Alabama, where they face waiting lists for services, if they live in areas where the services are even provided.

The National Research Council Committee on the Educational Interventions for Children with autism identified a need of intensive intervention programs, 25 hours a week or more. But many respondents to a task force survey reported the youngest children in Alabama, from birth to 3 years, were receiving far less, as little as six hours a month.

Parents and task force members who spoke Wednesday, during a meeting at the University of Alabama at Birmingham, talked about traveling as far as California to find certain programs they wanted for their children.

State Rep. Cam Ward, R-Alabaster, a co-chairman of the task force, said the state can do better, and must do better in providing services.

"Our biggest battle is with apathy and awareness," he said. Ward, who has a child with autism, initiated the task force at the urging of his wife, Julie, who wanted to help other families.

The task force, which was established by the Alabama Legislature, held seven community forums, and members visited a number of schools and providers. In all areas, the task force found service gaps that start in infancy and continue throughout the individual's life.

A 10-minute lag:

UAB Provost Eli Capilouto told the story of his sister and 21-year-old autistic nephew. His sister's former wish for her son was that she live 10 minutes longer than him, so he would always have care. But now, with improvements of services, and the potential for more improvements, the family has a better hope for the future, he said.

Getting those improvements to every Alabama community will not be easy. The task force recommendations will require funding from a number of sources, including the state.

The final report from the task force is expected to be released in May.

E-mail: losburn@bhamnews.com