by Megan Redshaw, Childrens Health Defense:
A 2021 study predicting a tsunami of future autism cases and costs if environmental root causes of the disease remain unaddressed was retracted last year under pressure from the “autism industry,” and republished last month. Rising prevalence rates and lack of state services show the predicted crisis is already playing out.
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The societal costs of autism spectrum disorder (ASD) in the U.S. are projected to reach $589 billion per year by 2030, $1.36 trillion per year by 2040 and $5.54 trillion per year by 2060 if steps are not taken to prevent the disorder, according to a study published last month.
The paper, “Autism Tsunami: The Impact of Rising Prevalence on the Societal Cost of Autism in the United States,” was first published in 2021, in the Journal of Autism and Developmental Disorders (JADD). It was retracted almost two years later by the publisher and editor, citing “concerns” with methodology and the authors’ “non-financial interests.”
Last month, Science, Public Health Policy and the Law peer-reviewed and republished the study — the first to project present and future costs of ASD that links rising costs to the increasing prevalence of the disorder.
The authors found that previous studies, which didn’t account for increasing prevalence, tended to overestimate current costs — because they assumed prevalence rates among adults are the same as rates among children — and underestimate future costs associated with a growing autistic population with shifting care needs.
Researchers Mark Blaxill, Cynthia Nevison, Ph.D., and Toby Rogers, Ph.D., projected future ASD costs in three scenarios: a base case scenario assuming the continuation of existing trends; a low scenario providing a conservative estimate of future costs; and a prevention scenario exploring possibility of future mitigation of environmental causes.
But these two premises of the paper — that prevalence is increasing and that environmental intervention is possible — made a straightforward modeling paper controversial and were the basis of the “concerns” raised that led to its retraction.
Those premises ran counter to the deeply held assumptions of the autism research and treatment industry, which continues to sidestep the issue of increasing prevalence and holds that autism is primarily a genetic and not an environmental disease.
U.S. could surpass 6% rates of ASD in children in 2024, 7% in 2032
To build their model, the researchers estimated four key parameters: the historic and future prevalence of ASD, the future size of the ASD population, the cost per individual over the course of a lifetime, and inflation projections.
Prevalence projections were based on the California Department of Developmental Services caseload data from 1931 to 2016. The researchers used U.S. Census Bureau population predictions to translate prevalence into actual numbers of people with autism. They multiplied those by different cost categories partitioned by age group and severity of ASD and applied an inflation index to their projections.
Nevison told The Defender this approach to calculating future costs was built on previous models that similarly identified cost categories and multiplied them by autism populations in each age group.
“But we used a more sophisticated prevalence model, and that provided an advance over previous work,” she said.
Their ASD prevalence model showed that based on current trends, the U.S. could surpass 6% rates of ASD in children in 2024 and 7% in 2032, and then would likely rise more slowly after that. This differed from previous models, which predicted continuous exponential growth.
Costs associated with ASD included “non-medical services” like community care and day programs, individual and parent productivity losses, estimated special education costs, early and behavioral intervention and medical costs.
Rising prevalence itself makes costs go up, the study showed, but so does the fact that the mix of costs changes over time as the autism population ages and has different care needs.
As people age, their needs change, Blaxill told The Defender, “You’re dealing with education and parental loss productivity in the early years, and you’re dealing with residential services and medical care and lost adult productivity of disabled people. So it’s a whole different profile.”
As the first generation of parents of children of the autism epidemic, who shouldered much of the burden of care-taking, begin to die around 2040, according to the study, costs of care that had been borne by them will shift onto state and federal governments.
The cost increase, Blaxill said, “is radical, it will cost $5 trillion a year.”
Nevison told The Defender that for their “prevention” scenario they looked to an existing example with good data where ASD rates had gone down.
She and a colleague published that research in JADD in 2020, showing that while ASD rates, which had increased for all U.S. children across birth years 1993-2000, either plateaued or declined among white families living in wealthy counties, suggesting those families made changes that lowered their children’s risk of ASD.
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