Congress Can Help Families, Individuals Dealing with Autism (Reps. Doyle, Smith, Engel, and Pickering)

Autism Spectrum Disorder is a neurological condition that affects more than a million Americans. It is associated with a number of atypical responses that begin appearing at a relatively young age, including difficulties in communicating and interacting with other individuals and exhibiting repetitive behaviors and intense interests in specific subjects.

The care involved in treating these symptoms often requires hours of intensive therapy every week — including specialized, highly-structured education programs designed to meet the individual’s needs. With early intervention and intensive treatment, the symptoms of autism spectrum disorder can be addressed, enabling individuals with autism and their families to participate fully in their communities. The earlier that treatment is started, the better the chance the child will reach normal functioning levels. Unfortunately, such treatment is often unavailable or unaffordable for many families.

Unfortunately, many autistic children today are not receiving the needed intervention and treatment. While awareness of autism spectrum disorder has increased in recent years, many educators and health care providers are still not trained to recognize this condition and provide the appropriate help. Moreover, diagnoses of autism in young children have skyrocketed in recent years. The reasons for this dramatic increase in diagnoses are still uncertain, but the implication is clear. Medical providers and educators trained to work with autism spectrum disorders have been overwhelmed by the increasing caseloads.

As members of the House Coalition for Autism Research and Education (CARE), we have been working for a number of years to raise awareness of autism spectrum disorder and increase federal funding for research and treatment.

Last year, for example, Congress enacted legislation with our support to substantially increase federal research on autism spectrum disorders.

Recently, we introduced the Expanding the Promise for Individuals with Autism Act to provide $350 million over the next 5 years for increased services for people with autism. Similar legislation was introduced in the Senate by Senators Hillary Rodham Clinton (D-N.Y.) and Wayne Allard (R-Colo.).

Specifically, the Expanding the Promise for Individuals with Autism Act would establish a Task Force to evaluate currently available therapies and services and make recommendations to the HHS and the Interagency Autism Coordinating Committee for expanding access to effective treatments and services across the nation. The bill would also establish a grant program to help states to provide the recommended services to individuals and families with autism. The bill would also establish a demonstration grant program to help states provide appropriate interventions and services to adults with autism.

The Expanding the Promise for Individuals with Autism Act would also increase the amount and quality of post-diagnosis treatments, interventions, and services to families with autism, and eliminate delays in access to supplementary health care, behavioral support services, and individual and family-support services. The bill would also create a program to expand currently existing protection and advocacy services. The bill would also increase the capacity of University Centers for Excellence in Developmental Disabilities Education, Research and Service to train professionals in meeting the treatment, interventions and service needs of both children and adults living with autism.

This legislation would also commission a study of ways to better finance autism treatment and services. Finally, The EPIAA would establish a National Center to act as a clearinghouse for information about evidence-based treatments, interventions and services, analyze the grant programs under this Act, and provide information about these programs to the public.

The Expanding the Promise for Individuals with Autism Act wouldn’t meet all of the need in this country for intervention, treatment, and services for families dealing with an autism spectrum disorder, but it would be a major step forward. We will be working in the coming months to enact this important legislation.