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Calls to Action

Autism Speaks Advocates for Mental Health

January 29, 2013

Dear friends and colleagues,

Although autism and mental illnesses cannot explain the violent tragedy in Newtown, Conn., Autism Speaks is committed to joining with others in advocating for improved mental health services. Like millions of other Americans, some individuals with autism spectrum disorder (ASD) develop mental illnesses that reduce their ability to hold jobs, develop relationships and enjoy life. Conditions such as anxiety, depression and obsessive-compulsive disorder are not uncommon among people with ASD.[i]

A recent study found that nearly half of adolescents with an ASD had used mental health services in the past year.[ii] Yet many children with ASD are not getting the mental health services they need. Compared to children with other disabilities or mental illnesses, children with ASD have more unmet healthcare needs and more difficulty accessing mental health services. Another study found that at least 15 percent of children with ASD lacked access to mental health services when they needed them.[iii] Although inadequacies in mental health services affect many Americans, the problem is more severe for individuals and families affected by ASD.

Why are healthcare inadequacies such a pronounced problem for children and adults with ASD? Reasons include inadequacies in health insurance coverage and managed care programs and a general shortage of providers with the skills needed to address this community’s often-complicated healthcare needs. Families find it extremely challenging to navigate the increasingly complex maze of providers and healthcare systems, each with their own set of contracts and requirements. For example, state Medicaid programs often have separate programs for mental health services, which can complicate coordination of care among providers.

Furthermore, many physicians are reluctant to care for children with ASD. This became evident in a survey of American physicians, many of whom reported that their medical training left them poorly equipped to treat children with chronic and complex conditions such as ASD.[iv] Consequently, improving access to quality mental health services and other healthcare will require both insurance reform and improved training in medical school and healthcare systems.

Norman Anderson, Ph.D., chief executive officer of the American Psychological Association, recently participated in a White House forum on violence prevention, convened by Vice President Joe Biden following the Newtown tragedy. After the meeting, Dr. Anderson reported a “clear unanimity on a number of issues, including the need to improve all aspects of mental health services for both children and adults; to reduce stigma and educate the public about mental health; to delink mental illness with violence; to make parity [equality of medical and mental health coverage] a true reality; and to deal with mental health workforce issues.” He urged the President to help ensure that every person who needs mental healthcare receives it – a goal that will rely on the full implementation of the mental health provisions in the Affordable Care Act.

Dr. Anderson’s recommendations are important for all Americans who struggle with mental illnesses. They are crucial for those with ASD who continue to struggle with inadequate access to the healthcare they need.

In closing I want to emphasize that Autism Speaks is committed to working with all parties to ensure that these recommendations – including coverage for behavioral health treatment under the Affordable Care Act – are implemented.

Warmest regards,

Geraldine Dawson

Chief Science Officer, Autism Speaks

[i] Rosenberg RE, Kaufmann WE, Law JK, Law PA. Parent report of community psychiatric comorbid diagnoses in autism spectrum disorders. Autism Res Treat. 2011;2011:405849.

[ii] Narendorf SC, Shattuck PT, Sterzing PR. Mental health service use among adolescents with an autism spectrum disorder. Psychiatr Serv. 2011 Aug;62(8):975-8.

[iii] See Chiri G, Warfield ME. Unmet need and problems accessing core health care services for children with autism spectrum disorder. Maternal and Child Health J. 2012 Jul;16(5):1081-91 for a full discussion of the challenges facing children with ASD in gaining access to health care services.

[iv] Darer, J. D., Hwang, W., Pham, H. H., et al. (2004). More training needed in chronic care: A survey of US Physicians. Academic Medicine,79(6), 541–548.