The price of caring for autism

Every time I talk about vaccines and autism, I make sure to mention that autism is still a serious condition which requires attention and resources. How much? A new study in JAMA Pediatrics answers. “Costs of Autism Spectrum Disorders
in the United Kingdom and the United States”:

IMPORTANCE The economic effect of autism spectrum disorders (ASDs) on individuals with the disorder, their families, and society as a whole is poorly understood and has not been updated in light of recent findings.

OBJECTIVE To update estimates of age-specific, direct, indirect, and lifetime societal economic costs, including new findings on indirect costs, such as individual and parental productivity costs, associated with ASDs.

DESIGN, SETTING, AND PARTICIPANTS A literature review was conducted of US and UK studies on individuals with ASDs and their families in October2013 using the following keywords: age, autism spectrum disorder, prevalence, accommodation, special education, productivity loss, employment, costs, andeconomics. Current data on prevalence, level of functioning, and place of residence were combined with mean annual costs of services and support,
opportunity costs, and productivity losses of individuals with ASDs with or without intellectual disability.

EXPOSURE Presence of ASDs.

MAIN OUTCOMES AND MEASURES Mean annual medical, nonmedical, and indirect economic costs and lifetime costs were measured for individuals with ASDs separately for individuals with and without intellectual disability in the United States and the United Kingdom.

This was a review of studies that examined individual costs of caring for someone with autism. They included direct costs of care, as well as indirect costs, such as productivity costs. They also looked at both the United States and the United Kingdom.

The cost of supporting someone with an ASD and an intellectual disability over a lifetime was $2.4 million in the US and 1.5 million pounds ($2.2 million) in the UK. If a patient had an ASD without an intellectual disability, the cost was still $1.4 million in the US and 920,000 pounds ($1.4 million) in the UK. In the US, 79% of total costs were for services, 12% for productivity losses, and 9% for caregiver time costs. In the UK, 56% of total costs were for services, 42% for lost productivity, and 2% for caregiver costs.

In childhood, most of the costs were for special education services, as well as lost parent productivity. In adulthood, most costs were for residential care or support and losses of individual productivity.

These are evidently higher than previously thought. Given the expense of caring for a person with autism, it behooves us to both understand better what causes it, and to find ways to improve our care for the condition.

@aaronecarroll

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