Guest post by health services researcher David Mandell, Sc.D., of the University of Pennsylvania’s Center for Mental Health Policy and Services Research and the Center for Autism Research at The Children’s Hospital of Philadelphia.
[Editor’s note: This past weekend, Dr. Mandell and his colleagues presented the early results of “Estimating the Economic Costs of Autism,” a study funded by Autism Speaks with guidance and technical assistance from the World Health Organization. You can read our related news story here.]
We knew we’d grab attention with our updated estimate of autism’s economic costs: $126 billion annually in the United States. Our comprehensive analysis, supported by an Autism Speaks research grant, included indirect costs such as lost income and caregiving, as well as direct costs in healthcare, education and adult services.
Hopefully the scope of this number will draw attention to the challenges that families and our society face in meeting the needs of those affected by autism spectrum disorders. But I have a longstanding concern about how we parse such numbers and how we, as a society, calculate value.
Yes, it can be helpful to look at the economic costs and benefits of the therapies and services that improve function and support families. And as the second part of our Autism Speaks research grant, we will examine the economic benefits of interventions such as intensive preschool therapy and adolescent-to-adult transition services. These numbers will give us important information about what it costs society to not treat autism. They may also become important tools for advocacy.
However, I treat with great suspicion the idea that developing a good care system for individuals with autism is an economic issue. It should be an ethical and moral one. I worry that it’s a two-edged sword to use dollar amounts to advocate for care. Our goal should be to design an efficient and effective system of care for individuals with autism of all ages because it’s the right thing to do, not because it saves us money.
That said, one of the things we see in our analysis – as well as those that preceded it – is that the overwhelming bulk of autism’s costs to society occur after individuals with autism reach adulthood.
I think this speaks to two critical issues: One is the need to maximize the likelihood of a successful transition into adulthood with quality services that begin with early intervention in childhood. The second, equally important issue is that we stop pretending that, when these individuals turn 21, their needs magically disappear.
The sad reality is that our care systems and government funding agencies essentially wash their hands of adults with autism. We know that intensive intervention during early childhood increases function, language acquisition and sociability. We shouldn’t waste this tremendous investment by yanking away supports when these individuals become adults.
For inspiration on how to address the needs of those with autism, I look to a paradigm-shifting study by Connie Kasari, Ph.D., of UCLA’s Center for Autism Research and Treatment. Dr. Kasari compared the outcomes of social skill training for elementary school children affected by autism with the benefits of training their peers to provide social support for classmates with autism. She found that the peer training was essential to increasing friendships and positive engagements on the playground.
For me, this reflects what we know so well from behavioral intervention programs: One of the most important things you can do to increase success for children and adults with autism is to modify their environment to make it easier for them to function.
This is exactly what we need to be doing in our society as a whole to help adults with autism become an integral and functioning part of our communities. How can we work with local colleges, businesses and residential communities to create environments where adults with autism can thrive?
If the answers to these questions deliver an economic benefit to society, that’s great. But we have to remember that our goal is not an economic one – it is an ethical and moral one.
For more perspective, see these recent blog posts and news items: “Costs of Autism Summit,” “Autism Care Slams Mom’s Income” and “Autism and Family Income: A Mom’s Story,” “Autism Prevalence Rises to 1 in 88,” and “How Will Autism’s Rising Prevalence Affect our Families, Schools and Communities?”