The High Cost of Autism
by Theresa Wrangham
From Mothering magazine Issue 153, March–April 2009
Twelve years ago, tears stained my face as my husband and I were told that our eldest daughter, Rachel, then six-and-a-half years old, had autistic tendencies that would require further diagnostic investigation. Six months later, Rachel was diagnosed on the Autism Spectrum with Pervasive Developmental Disorder—Not Otherwise Specified (PDD/NOS). In layman’s terms, Rachel was mildly autistic.
Even so, she would face significant challenges in everyday life that would require treatment to mediate the long-term effects of this disorder. The early medical advice we received centered on treatment focused on core features of autism’s deficits: delays in acquiring language and social skills, and in developing relationships and the capacity to reason, or what is commonly known as behavioral intervention. Years later, we would discover coexisting medical conditions that contributed to Rachel’s autism symptoms, and the value of the medical treatments that have jump-started Rachel’s more recent improvements and reduced her autism symptoms. We also discovered their cost.
I was a stay-at-home mom when Rachel was diagnosed, and my husband, Scott, had a job with good health coverage—or so we thought. It quickly became apparent that our insurance would not cover the widely recognized behavioral treatments that Rachel needed, let alone the medical treatments we have since used with success. We were told that, as a middle-class family with assets, we didn’t qualify for the services that assist poorer families in meeting the financial burdens of treatment. But it was clear to us that if we couldn’t find a way to pay for Rachel’s treatment and education now and in the future, our family faced a downhill slide to financial disaster. Autism was now the predator stalking our family, threatening not only Rachel’s potential, but also our hopes for college opportunities for both our children, and Scott’s and my hopes for our own retirement.
Having previously worked in the petroleum field of Alaska’s North Slope, Scott quickly subcontracted for a position in Alaska. This means that he is away from his family for more than half the year, working a two-week-on, two-week-off schedule above the Arctic Circle, in order to make enough money to pay for Rachel’s treatment and give us some semblance of financial normalcy. From then till now, we have continued to pay our normal living expenses and the usual expenses of running a subcontracting business—payroll, taxes, insurance, travel, training, etc.—as well as the high costs of all autism treatments for Rachel not covered by our health insurance. Last year, our family’s direct and indirect expenses for Rachel’s treatment totaled about $45,000. But the prospects for many families facing this all-too-common financial scenario are worse—many are unable to meet the financial obligations that treating autism entails.
A recent study published by Harvard University stated societal costs for caring and treating individuals with an Autism Spectrum Disorder (ASD) in the US to be more than $35 billion per year.1 Per ASD individual, annual direct medical costs, which include prescription medication and behavioral therapies, are estimated at $29,000, and direct nonmedical costs, such as special education and camps, at between $38,000 and $43,000.2 Annual indirect costs—which include parents’ lost income—are estimated to range from $39,000 to nearly $130,000.3 Nor do these estimates take into account indirect costs including alternative therapies such as special diets as well as genetic testing, legal fees incurred in the securing of services, costs of adverse outcomes of treatments, or costs associated with immunization-avoidance behaviors.4
AMNews reported the medical loss ratios for 2005 of the largest for-profit health insurers and found that profits for the biggest insurers continued to rise even as the amounts they disbursed for care declined.5 Unsurprisingly, according to one study, 50 percent of US bankruptcies in 2001 were attributable to illness or medical bills, indicating that the ASD community is not alone in its struggle for equitable health care and treatment.6
This is a sad state of affairs, given that long-term outcomes for ASD individuals who are given the benefit of early-intervention behavioral treatment and receive early diagnosis realize a significant reduction of the costs associated with lifelong care.7 Early-intervention strategies implemented with older affected children, who are often excluded from government programs, also demonstrate measurable gains in IQ.8 This argues for granting them access to treatment to reduce the financial impacts on education and government support programs.
Additionally, biomedical imbalances identified in autism respond favorably to existing medical and nutritional interventions, and more and more families are pursuing these interventions with success.9 Without the benefit of insurance or government programs, however, that success is often purchased at a huge cost ?to a family’s emotional and financial well-being.
Today, Rachel has progressed further than we could have imagined, defeating many of the nevers on the list of things that Scott and I were told, when she was diagnosed, that she would never be able to do. That progress continues to be realized through the application of behavioral and biomedical interventions financed out of our own pockets. The coverage by health insurers of recognized and effective treatment ?is critical in addressing the extreme financial burdens of families and individuals touched by autism.
Real action to financially assist families will require that many states address the outdated definitions of developmental disability that determine eligibility for services. This will help defer some of the costs, and include individuals with real needs who presently fall through the cracks in the system. The for-profit insurance paradigm must also be redefined to place a higher priority on health care and treatment than on profits and shareholder returns. Without such action, many families will continue to be driven into bankruptcy, with tangible impacts on our economy ?and incalculable cost to our humanity.
By receiving the support and treatment she needed, Rachel, now 18, has successfully held down full-time summer jobs, and has sufficiently good life skills to live on her own with minimal assistance. Achieving her long-term goal of living independently with gainful employment is likely to require minimal government assistance, which will allow her to earn money that will in turn benefit the economy. But due to underfunding of adult service programs and barriers to eligibility, it is equally likely that Rachel will not receive the services she needs, and that the financial burden will continue to be on us, her parents, and passed on to our younger daughter, Deanna, and thus continue to have negative impacts on the economy.
As increasing numbers of children with ASD grow to adulthood, more and more families face similar scenarios. The government has a stake in supporting those long-term outcomes that benefit society, and should try to do what is possible to keep ASD adults from needing government programs at the highest cost levels—which means helping them more at earlier ages. People developmentally disabled by ASD and other conditions deserve access to treatment and services that allow them to fulfill their potential as individuals to lead happy, productive lives.
Currently, autism is estimated to affect individuals at a rate of 1 in 150 10, with an estimated annual growth in this rate of 10 to 17 percent.11 ASD, which now affects 1.5 million Americans, all by itself presents a national health-care crisis.12 In addressing the autism epidemic, there must now be a sense of urgency. Desirable long-term outcomes necessitate the full funding of research by our government, as well as the development of a national comprehensive autism policy. Such a policy must prioritize research into areas identified as having the most promise and/or that are now being understudied, such as environmental factors (including vaccines), as well as address the delivery of services and treatment with the goal of helping as many affected individuals today while preventing future instances of autism. It is time for autism to be recognized as a highly treatable disorder for which a recovery of health is possible, and treatment and services are accessible and affordable.
Who Will Need Government Aid?
Here are the costs of no early intervention and the benefits of early intervention:
Without early intervention13
• 50 percent will require extensive government support as adults
• 25 percent will require some government support as adults (Medicaid, work programs, assisted living)
• 25 percent will require no government support as adults
With early intervention 14
[at least 23 hours per week of Intensive Behavioral Intervention (IBI)]
• 20 percent will require extensive government support as adults
• 50 percent will require some government support as adults
• 30 percent will require no government support as adults
Theresa Wrangham lives in Colorado with her husband, Scott, and their daughters, Deanna (15) and Rachel (18). She is president of the Coalition for SafeMinds, and director of education development and conference liaison for the US Autism & Asperger Association.
Photo by Julia Vandenoever
1. Michael L. Ganz, MS, PhD, “The Lifetime Distribution of the Incremental Societal Costs of Autism,” Archives of Pediatrics & Adolescent Medicine 161, no. 4 (2007): 343–349.
5. Jonathan G. Bethely, “Health Plans Make More, Spend Less in 2005: Insurers’ Medical-Cost Ratios Are Lower than Ever,” AMNews (6 March 2006): www.ama-assn.org/amednews/2006/03/06/bisd0306.htm.
6. David U. Himmelstein et al., “MarketWatch: Illness and Injury as Contributors to Bankruptcy,” Health Affairs (2 February 2005): http://content.healthaffairs.org/cgi/content/full/hlthaff.w5.63/DC1.
7. K. Järbrink and M. Knapp, “The Economic Impact of Autism in Britain,” Autism 5, no. 1 (2001): 7–22.
8. Sandra L. Harris and Jan S. Handleman, “Age and IQ at Intake as Predictors of Placement for Young Children with Autism: A Four- to Six-Year Follow-Up,” Journal of Autism and Developmental Disorders 30, no. 2 (April 2000): 137–142.
9. Autism Research Institute, “Parent Ratings of Behavioral Effects of Biomedical Interventions,” ARI Publication 34 (February 2008): www.autism.com/treatable/form34qr.htm.
10. Centers for Disease Control, “Prevalence of Autism Spectrum Disorders—Autism and Developmental Disabilities Monitoring Network, Six States, United States, 2000,” MMWR Surveillance Summaries 56, no. SS-1 (9 February 2007): 1–11; www.cdc.gov/mmwr/pdf/ss/ss5601.pdf.
11. Autism Society of America analysis of future growth, based on U.S. Dept. of Education Report to Congress (2002), Centers for Disease Control & Prevention Autism Prevalence Data (2007), and the U.S. Census (1999–2000): www.autism-society.org/site/PageServer?pagename=about_whatis_factsstats.
12. Based on the autism prevalence rate of 2 to 6 per 1,000 (Centers for Disease Control and Prevention, 2001) and 2000 U.S. Census figure of 280 million Americans.
13. B. J. Freeman, “Guidelines for Evaluating Intervention Programs for Children with Autism,” Journal of Autism and Developmental Disorders 27 (1997): 644–645.
14. S. S. Motiwala et al., “The Cost-Effectiveness of Expanding Intensive Behavioural Intervention to All Autistic Children in Ontario,” Healthcare Policy 1, no. 2 (2006): 135–151.