Autism and the Recovery Act
Service in the Field: National Health Service Corps (NHSC)
The NHSC is a network of primary health care professionals working in underserved communities across the country. To support their service, the Recovery Act allocated funding to the NHSC to provide more than 4,000 clinicians with financial support in the form of loan repayment.
One NHSC loan repayor receiving Recovery Act funds has become involved in treatment/support of ASD patients. Andrea Kinlen, Ph.D., a licensed clinical psychologist working in McPherson, Kansas, is working with patients and families to provide testing and therapy services for ASD patients. As Dr. Kinlen continued to spend time with patients, learning about their struggles and telling them they weren’t alone, an idea for a local support group emerged. Encouraged by the support of her supervisor and funding provided by a partial community grant, Dr. Kinlen engaged the families she counseled, other clinics, and local schools. As families came together, they were able to share stories and discuss challenges. Although the ages of the children and levels of severity vary, members of the group have found much common ground.
Autism spectrum disorder (ASD) is a group of complex neurodevelopmental disorders characterized by social impairments; communication difficulties; and restricted, repetitive, and stereotyped patterns of behavior. These characteristics can range in impact from mild to significantly disabling. The Centers for Disease Control and Prevention estimates that an average of 1 in 110 children in the United States has ASD. Symptoms usually begin to appear before age three and can cause delays or problems that continue through adulthood. Early detection of ASD and intervention can greatly increase a child’s ability to learn new skills and improve overall quality of life.
The cost of ASD to affected people, their families, and society is enormous. Children with ASD have a wide range of healthcare and services needs, and their families typically lose income, often as a result of one parent leaving the workforce in order to care for and meet his or her child’s special health and educational needs. A great majority of adults with ASD struggle with ongoing and mostly unmet needs for employment, housing, services, and supports. Lifetime costs to care for an individual with ASD have been estimated to be $3.2 million. 
With funding from the American Recovery and Reinvestment Act (Recovery Act), the U.S. Department of Health and Human Services has been able to accelerate work in promising areas of ASD research.*
National Institutes of Health (NIH)
NIH invested $122 million in Recovery Act funds for groundbreaking research on ASD that otherwise would not have been possible, in areas such as screening, early detection, potential interventions and therapeutics, and in revealing the precise causes and mechanisms underlying this disorder (which are still largely unknown). Research area highlights include:
- Aiding Diagnosis: A two-site study at the University of Michigan-Ann Arbor and the Cincinnati Children’s Hospital is adapting the interview tool that is the current gold standard for diagnosing ASD into a brief parent interview that can be done over the telephone. This new tool may help reduce screening costs, which could mean that more children are able to be screened, and that screening could occur earlier in a child’s life, leading to starting treatments sooner for the child. Additionally, reduced costs would help researchers to quickly identify potential participants for ASD studies. As part of the research process, study investigators performed free ASD screenings in Ohio and Michigan to test their changes to the interview tool. These screenings have reached children from many families for whom a screening might otherwise have been too costly to afford. Read more.
- Addressing Disparities: Investigators at Florida State University are exploring the significant racial and ethnic minority disparities that exist in the early diagnosis of ASD, often delaying minority access to beneficial early interventions and services. The results of this research will lead to culturally sensitive screening and evaluation methods that may decrease the age at which all children with ASD are diagnosed. Read more.
- Possible Causes: Although the exact causes of ASD are still unknown, research suggests an interaction between environmental factors and genetic predisposition. A number of Recovery Act-funded studies are using advanced DNA sequencing technology that allows for quick study of many genes at a time, while others are focusing on a variety of other potential causes. For example, one study at the University of California-Davis is exploring the role of infection during pregnancy on raising the risk of ASD in a mouse model. Research suggests that a mother’s immune response to infection may affect levels of immune molecules in the fetal brain, impacting brain development and possibly contributing to ASD. Read more.
- Improving Interactions: Most children with ASD seem to have no reaction to other people or may respond atypically to others’ emotions. Such behavior can isolate children with ASD from their peers. NIH awarded a Challenge grant to support the development and testing of a new computer-assisted program at the University of California, San Diego to train children with ASD how to respond to others’ facial expressions (for example, widening one’s eyes, wrinkling one’s nose, etc.), and how to produce facial expressions conveying particular emotions to others. Read more.
- Potential Therapeutics: In another study, researchers at the Mount Sinai School of Medicine will determine whether a certain hormone improves social cognition in adults with ASD—a potentially new treatment for social impairment linked to ASD. There has been little headway in the development of pharmacological treatments for social impairment, and it is widely acknowledged that such treatments are needed as an alternative or addition to behavioral interventions. Read more.
- Skill Development: Employment can provide greater independence to people with ASD, but symptoms of the disorder often pose major social and communication barriers. In response to this issue, researchers at Do2Learn.com developed the free JobTIPS website. JobTIPS presents job-seeking resources to youth with ASD, and also provides detailed explanations of how to behave in specific situations, such as what to say and not say to a potential employer, and how to disclose their diagnosis. Two autism research centers at the University of North Carolina at Chapel Hill and Emory University, Atlanta, will help evaluate the effectiveness of JobTIPS in helping teens and young adults with ASD to learn new job-related skills and apply them in real world situations. Read more.
Read more about NIH’s Recovery Act-funded investments in ASD and learn how these investments are moving science forward sooner than anticipated in addressing some of the most significant challenges to understanding and treating ASD.
Agency for Healthcare Research & Quality (AHRQ)
AHRQ is using $1.4 million in Recovery Act funding for research that seeks to provide patients, clinicians, and others with evidence-based information to make informed decisions about health care—including research on ASD intervention strategies:
- Communicating ASD Treatments: There is no cure and no consensus regarding which intervention strategy is most effective for treating ASD. Given the complexity of ASD and associated therapies, it is clear that teachers, clinicians, and families need guidance in selecting appropriate treatments. AHRQ-funded research is developing, implementing, and evaluating strategies for disseminating information online about treatments for autism and ASD to over 16,000 individuals in important clinician, parent and teacher audiences. This novel approach will accelerate the translation of new scientific evidence on ASD therapeutics into practice and decision-making in families, the education system, the health care system, and public policy. Read more.
 Centers for Disease Control and Prevention. Prevalence of autism spectrum disorders - Autism and Developmental Disabilities Monitoring Network, United States, 2006. Morbidity and Mortality Weekly Report (MMWR) Surveillance Summaries. December 2009;58(10):1-20.
 Montes G, Halterman JS. Association of childhood autism spectrum disorders and loss of family income. Pediatrics. April 2008;121(4):e821-6.
 Ganz ML. The lifetime distribution of the incremental societal costs of autism. Archives of Pediatrics & Adolescent Medicine. April 2007;161(4):343–9.
*Projects cited in this report are examples of Recovery Act funding being applied to autism, not a comprehensive listing of Recovery Act-funded projects.