Research funded by Autism Speaks has provided the most comprehensive and current estimate of autism’s costs to individuals, families and society:
* The lifetime cost for an individual averages $2.4 million when autism involves intellectual disability and $1.4 million when it does not. An estimated 40 percent of individuals with autism also have intellectual disability.
* Based on these numbers, the yearly cost to the United States is an estimated $236 billion a year.
The findings – published today in JAMA Pediatrics– provide crucial information for service planning and public policy, experts agree.
“In funding this study, Autism Speaks sought to provide policy makers much-needed insight into autism’s overall economic impact on families and society,” says Autism Speaks Chief Science Officer Robert Ring. “From our community as well as early research, we knew that these costs went far beyond the expense of therapy and education. This is precisely the kind of information we need to guide how we invest in services that reduce costs while improving quality of life across the lifespan.”
Autism can be a major source of stress on the health, social and financial well-being of individuals, their families and society as a whole, concurs the study’s senior researcher David Mandell. Dr. Mandell directs the Center for Mental Health Policy and Services Research at the University of Pennsylvania. “Having an accurate estimate of the economic cost of autism has great implications for service and system planning,” he says.
The study’s authors included investigators from Penn and the London School of Economics. They analyzed previous research in both the United States and the United Kingdom, updating and supplementing to estimate the cost of accommodation, medical and non-medical services, special education, employment support and productivity loss.
Education, lost income and residential care
The number of individuals with autism is estimated at more than 3.5 million in the United States and nearly 605,000 in the United Kingdom. The study estimated the national cost of supporting children with autism at $61 billion per year in the US and $4.5 billion per year in the UK. The costs for adults with autism was $175 billion a year in the US and $43 billion in the UK.
The bulk of childhood costs are in special education and lost parental income. During adulthood, the highest costs relate to residential care and lack of employment. Previous research, also supported by Autism Speaks, has shown that adults with autism have greater difficulty finding and maintaining employment than do individuals with any other developmental disability.
“The fight to make high quality services available for individuals with autism has often been a debate about how expensive these services are,” Dr. Mandell comments. “My hope is that the results of this study will show that the cost of caring for individuals with autism may be less than the cost of not properly caring for them.”
Lost parental income is of particular concern. “This makes it imperative that we examine how high-quality intervention can help allow parents to stay in the work force,” Dr. Mandell says. “It also suggests we need policies that make the workplace friendlier to families of children with disabilities.”
Mandell also emphasizes the implications of the high cost of adult residential care. “The fact that so many adults with autism are living in residential homes may represent a failure of our society to provide options that integrate these individuals into their communities.”
Because autism severity is a main driver of costs across the lifespan, the key to reducing costs may be better access to quality early intervention, concludes Michael Rosanoff, Autism Speaks associate director for public health research. “These interventions have been shown to improve functioning and have lasting, long-term benefits with the potential to improve lives while reducing lifetime costs.”
In an accompanying JAMA Pediatrics editorial, Paul Shattuck and Anne Roux of Drexel University write:
“For families, an autism diagnosis can also mean a lifetime of absorbing many of the financial and care-giving burdens associated with the disorder, especially in adulthood when the availability of societal support diminishes. … For nearly seven decades, evidence from the Framingham Heart Study and other longitudinal studies has laid the foundation for our contemporary understanding of the epidemiology and treatment of cardiovascular disease. We need a Framingham Study for autism spectrum disorders, especially to track risks and outcomes into middle and later adulthood.”
With research funding from Autism Speaks, Dr. Shattuck has pursued research into the factors that promote successful outcomes in adolescents and young adults with autism. See his and Ms. Roux's Autism Speaks blog post: Costs of Autism: A Call for a New Mindset of Investment and Innovation.
For still more perspective on autism’s economic impact, along with related Autism Speaks resources for individuals and families, also see:
* Supporting Adolescents and Adults with Autism: Critical Life Transitions
* Autism and Family Income: A Mom’s Story
* Mounting Evidence of Critical Need for Adult Transition Support
* The Autism Speaks Employment Tool Kit
* Your Dollars @ Work: Helping Adults on the Path to Successful Careers
* Focus on Employment Opportunities at the Autism Investment Conference
* Housing and Residential Support at the Autism Investment Conference