CDC estimates the rates for Autism Spectrum Disorders (ASD) are as high as 6.7 children per 1,000 or one in 150. However, today there is a greater availability of resources, scientific progress, and research opportunities due to computerized information, bioinformatics and information technology to help children and their families with ASD.
Since research is key to understanding ASD, NIH has pledged $60 million made available largely through Recovery Act funding. The funds include $30 million for NIMH, $5 million for NINDS, $20 million for NICHD, and $5 million for the National Institute for Environmental Health Sciences.
The funds will provide for 40-50 grants to do research, develop diagnostic screening tools to use for diverse populations, to adapt effective pediatric treatments for teens and adults, to initiate clinical trials to test early interventions, and to assess risk from prenatal or early life exposures.
The funding will be used to jump-start some of the short term objectives in the “Strategic Plan for Autism Spectrum Disorder Research” developed by the Interagency Autism Coordinating Committee. This committee coordinates all efforts concerning autism spectrum disorders for the agency.
Telemedicine is playing a part in helping parents of children with autism. The Life Span Institute in their “Juniper Gardens Children’s Project” at the University of Kansas, is developing a Research-to-Practice Outreach Training model to teach parents of children with ASD how to implement research-based interventions with their child.
Phase II of the program will have the families complete an online tutorial in a telemedicine session. In Phase III, the parents will use online tutorials to learn general information and concepts related to an intervention or treatment protocol followed by either an onsite or telemedicine clinic intervention. Parents in Phase III will be randomly assigned to either a telemedicine or to an onsite clinic.
Registries are playing an important role in locating resources and providing information in the field. NIH has set up the “National Database for Autism Research” to facilitate and to share research information for autism research. The database provides an important resource to keep up with the tools and techniques needed to work in the field.
Several states have now set up registries to provide researchers with information to empower family members and caregivers. New Jersey has set up a registry designed to streamline treatment and services for families with autism and other special healthcare needs. The plan for the registry is to help find an easy way for families to be connected to the appropriate diagnostic, treatment and support services in their communities.
The New Jersey Registry requires psychiatrists, psychologists, neurologists, and other medical professionals to register the children diagnosed with autism and birth defects. The information is confidential and is used to refer families to services and to enable state officials to more effectively plan for future needs.
Today, approximately 50 of the state’s hospitals offering birth and delivery services have been trained in the use of the new electronic registry system. In addition, the staffs at six Autism Centers of Excellence funded by the state Autism Council were trained in the use of the system.
The state of North Carolina established the “Autism Spectrum Disorders Registry in collaboration with TEACCH, the largest provider of autism diagnostic and treatment services in North Carolina. TEACCH has 9 regional centers across the state serving over 750 individuals each year. Families using the TEACCH Centers for services can participate in the Registry and may also be referred to the Registry by other clinical service providers. The registry has been operating since 2001 and enrolls approximately 500 new participants each year.
Other states with registries addressing autism include Utah’s registry that collects and shares information on people with ASD, West Virginia’s registry tracks the number of new cases of ASD, Missouri’s registry unites resources at state agencies with healthcare providers and families, and New Hampshire’s registry tracks diagnostic findings.