The Hefty Cost of Caring for Children and Adults with Autism by Rishma Parpia

Immune & Brain Disorders

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The Hefty Cost of Caring for Children and Adults with Autism

by Rishma Parpia

Published September 1, 2016 | Health, Immune & Brain Disorders

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Story Highlights

• Families of children with ASD bear a huge financial burden caring for their child.
• A 2014 study reveals that the cost of caring for an individual with ASD over their lifetime is approximately $2.4 million.
• If the prevalence of ASD continues to grow as it has in recent years, the economic costs will rise from $268 billion in 2015 to $461 billion by 2025.

According to the 2014 Health National Survey, 1 in 45 American children between the ages of 3 and 17 years old have autism spectrum disorder (ASD).¹ It is one of the fastest growing developmental disorders in the U.S.² This figure is concerning for several reasons, one of which is the financial cost to parents for caring for their child. In the U.S., poverty among families with an autistic child is growing rapidly with very limited government-funded programs to assist parents.³ This places a big burden on families with autistic children.

The Lifetime Cost of Raising a Child with ASD

ASD is a neurodevelopmental disorder associated with impaired social ability particularly with respect to communication and interaction. Other characteristics of ASD include restricted and repetitive patterns of behavior and limited interest in activities.⁴ The disorder ranges from mild to severe cases that make daily routines challenging and nearly impossible for those affected and their families.⁴ ASD is associated with functional impairments that carry long-term health, social and financial costs for families and the society at large.
According to authors of a 2014 study published in JAMA Pediatrics, the financial toll on families and society “is much higher than previously suggested.”⁵ The study finds that the cost of supporting an individual with ASD with an intellectual disability over their lifetime amounts to $2.4 million in the U.S. The study estimates that between 40-60% of individuals with ASD also have an intellectual disability.⁵ The cost of supporting an individual with ASD without an intellectual disability is $1.4 million.
The major components of the cost for children were special education services and parental productivity loss. For adults, the largest components of the cost were supportive living accommodation/residential care, medical care and individual productivity loss.⁵
David Mendell, an author of the study and the Director of Center for Mental Health Policy and Services Research at the University of Pennsylvania told The Huffington Post:

I was surprised that the second-highest cost in childhood was lost wages for parents leaving work to care for children with autism. Normally, when we look at expenses, we’re looking at system-level expenses, education costs… We’re so rarely looking at more indirect costs.⁶

The study reveals that on average in the U.S., the cost for children with autism who also have an intellectual disability was over $107,800 per year up to age 5 and approximately $85,600 per year between ages 6 and 17.⁵ Among children diagnosed with ASD but without an intellectual disability, the costs were lower with approximately $63,290 per year up to the age of 5 and $52,205 per year for those between the ages of 6 and 17.⁵

Forecasting the Economic Burden of Autism in the U.S.

According to a report published in the Journal of Autism and Developmental Disorders, the total economic costs for autism in 2015 was approximately $268 billion in the U.S.⁷ This figure included annual direct medical, non-medical and productivity costs combined.⁷ The report states that this estimate is on par with estimates for diabetes and attention deficit and hyperactivity disorder (ADHD) and far exceeds the costs of stroke and hypertension.⁷
The report’s author Paul Leigh, a health economist at the University of California-Davis Center for Healthcare Policy and Research, states:

But if the prevalence of autism spectrum disorder continues to grow as it has in recent years, ASD costs will likely far exceed those of diabetes and ADHD by 2025.⁸

The report forecasts that the cost of ASD will leap to an estimated $461 billion by 2025 if current trends continue.⁷ This raises some very concerning issues that the authors articulate as follows:

The burden of ASD is significant for 2015 but alarming for 2025 and, in our opinion, invites debate about policy responses. The first response is that research into the possible modifiable causes of ASD should become a priority as great as other major diseases; prevention is cheaper than cure or than improving the functioning of persons with ASD. If modifiable causes can be found, for example, a toxin, then another policy response would be to eliminate or reduce the amount of that toxin in the environment. A third response is a call for additional research into cost-effective treatments to improve functioning. The paucity of cost-effectiveness or cost-benefit studies is remarkable.⁷

The U.S. faces a great threat to its economic success due to the increasing prevalence of ASD. Not only do families bear the financial burden of caring for a child with ASD but also if our children continue to get diagnosed with ASD, they are unlikely to be productive in the labor force as adults. Public health officials should be treating this with urgency and focusing their efforts on understanding the cause of ASD before it is too late.

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