Autism is costing society $137 billion annually, according to new estimates that suggest a three-fold increase in less than a decade.
The figure comes from preliminary findings of a new analysis of the economic impact of autism. The results of the Autism Speaks-funded study are expected to be presented Saturday at a conference in Hong Kong.
Researchers at the University of Pennsylvania and the London School of Economics reviewed multiple studies looking at the costs of education, health care and other needs of those with autism to come up with the new estimates.
They found that lifetime care for an individual with autism who also has intellectual disability runs $2.3 million in the U.S. on average. For those on the spectrum without intellectual disability, they calculated $1.4 million in lifetime expenses.
Based on newly-released prevalence estimates suggesting that autism affects 1 in 88 U.S. children, the researchers found that the developmental disability is costing society $137 billion each year. That’s a significant increase over a 2007 study in the Archives of Pediatric and Adolescent Medicine which pegged autism’s yearly impact in the U.S. to be closer to $35 billion.
The majority of the costs associated with autism over the lifetime occur in the adult years, the new analysis suggests. Specifically, funding residential care for those with autism who are often unemployed or underemployed adds up.
“We are paying for the costs of inaction and the costs of ‘inappropriate action,’” said David Mandell of the University of Pennsylvania, who is behind the research. “Social exclusion of individuals with autism and intellectual disability, and exclusion of higher-functioning individuals from employment opportunities are increasing the burden not only on these individuals and their families, but on society as a whole.”
The number is impressive, but it probably doesn’t take into account the cost to the family for services and items not covered by insurance, Medicaid or medical exploration of symptoms/therapies. If you don’t have the financial abilities your child will not progress to his/her full ability. If you do have financial abilities it will make a very big dent in anybodies savings, as one who will now be working until I die.
It will be interesting to see the eventual publication of this study and examine the assumptions about employment and vocational support costs. This work appears to be a follow-up to Ganz’s 2007 article on society costs of autism. I deeply respect Ganz’s effort – it is a herculean task and very important. However, I found it hard to decode the assumptions about employment he used in his calculations, much less their basis. Ganz seemed to assume that something like 3/4 of adults with autism would not be employed, and those that could work would require lifetime job coaches, but I was not able to locate a clear statement of these assumptions. As a marker of then-current employment status, that might have some merit, but I question it as a forecast of what is possible or even likely in the future. In particular, I question the (apparent) assumption that lifelong job coaching is necessary for all who are employed. Given the length of adulthood (compared to childhood), these kinds of assumptions have a profound impact on cumulative costs, opportunity costs, and community services costs.
So I look forward to seeing Mandell’s research and looking at the assumptions involved around employment. There are so many innovative autism employment programs in the works, with large companies like TIAA-CREF, Walgreens, AMC Theatres, 3M, and Best Buy taking an active interest and, in turn, attracting interest from other corporations. I believe these kinds of projects will dramatically shift the financial balance of societal costs for adults with autism, not to mention improving the career prospects for individuals with autism.
Dr. Scott Standifer
Disability Policy & Studies
University of Missouri
Organizer, Autism Works National Conference
I agree with Paul Deane. In addition, insurance companies are telling (some) parents that the network is closed to adding providers in the field of ABA therapy. In the county I live in, there are a total of 9 BCBA’s. The latest census showed that the county population was 544,179. Of that 26.3% were children under the age of 18. The math doesn’t add up for those BCBA’s to handle a caseload based on the current ratio (1:88) of autism diagnoses. It is a huge disservice to the children with the diagnosis of Autism, that they can not receive the therapy that is proven to be effective and needed!
How much does it cost to care for those typical people who must use an emergency room due to lack of available health care? How much does it cost to care for those typical people who are unemployed for many years (food stamps/unemployment benefits/job training)? How much does it cost to raise a typical child to be a functioning adult? Don’t make this an “us” v “them” thing with large, scary-looking numbers when in reality it isn’t so much.
1.4 million in a lifetime, when stretched out over 57 years (say from age 18 to 75) is approximately 25,000 per year, is a bargain if considering housing, assisted living needs, transportation, etc. I think we need to see where money is being spent now and try to better serve these people when they are young to be more independent (with supports if needed). School districts are notorious for refusing to provide services at a crucial time in a child’s life through the IEP and lawyers make a killing in billable hours to school districts fighting to avoid their responsibilities to the children. Get rid of the middleman lawyers and just give the student what is needed and there will be a tremendous savings right there.
It’s not so much that it’s a societal cost – it’s more a societal breakdown with setting priorities. Money is out there and available – just not in the right pockets to do the most good.
My son is only 16 and we’ve already had to cash in both of our retirement accounts. My husband and I are 48. We’ve easily spent at least a million dollars already on him (and money others have helped us raise). He is on the severe end of the spectrum.
We must look to incorporate assistive technology with UDL designed tools that provide support for independent living skills with a strong focus on personal organization. Assistive technology can profoundly impact an individual’s life yet often, they are the last in line to have access. So I pose this question as we balk about the cost of caring for adults with ASD, how can we continue to say that people need to learn to be more independent and self-determined if we don’t work hard to give them the tools to do so?