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Autism Research



Autism costs the UK more than £34 billion a year, and has more than tripled in the US to $126 billion, according to new LSE research.

The cost of providing care for each person with autism affected by intellectual disability through his or her lifespan are £1.5 million in the UK and $2.3 million in the U.S. The lifetime costs of caring for individuals who are not impacted by intellectual disability are £917,000 in the UK and $1.4 million in the U.S. The research, funded by Autism Speaks, the world’s largest autism advocacy group, was conducted by Professor Martin Knapp of LSE, and Dr David Mandell of the University of Pennsylvania. It will be presented at the international conference “Investing in our Future: The Economic Costs of Autism,” hosted by Goldman Sachs Hong Kong in collaboration with the Child Development Centre and Autism Speaks, on March 31 in Hong Kong.

Knapp and Mandell compiled information from recent studies of autism costs from multiple sources to calculate the current cost of autism associated with the current CDC-reported prevalence that 1:110 children are diagnosed with an autism spectrum disorder (ASD). The cost of autism continues to grow with the rise in prevalence. While the latest prevalence estimates in the U.S. and U.K. are comparable, the primary difference in total costs of autism in the U.S. and U.K. are due to differences in total country population (five times larger in the U.S. than the U.K.). The research team found that the cost of autism in the U.S. alone is greater than the entire Gross Domestic Product (GDP) of 139 countries around the world.|.

Bob Wright, co-founder of Autism Speaks, said, “Autism is a global public health crisis. The costs are staggering and will continue to rise as prevalence continues to increase. We know that early diagnosis and treatment are critical, so it is imperative that the U.S. and governments around the world step up their commitment to helping people living with autism today. The investment we make now is essential to reducing the long-term costs of autism.”

This research found that intellectual disability plays a major role in the cost of autism to individuals, families, and society as a whole. The costs of autism per year are nearly twice as high on average for children and adults with intellectual disability than for children and adults without intellectual disability, $2.3 million in the U.S. and £1.5 million in the U.K. ($2.4 million) for those individuals who are impacted by intellectual disability compared with more than $1.4 million in the U.S. and £917,000 ($1.46 million) in the U.K. for those who do not have intellectual disability.

A number of factors were considered by the researchers that contributed to the cost differential between U.S. and U.K. lifetime and total costs. The education and healthcare systems in the two countries offer different responses to the needs of people with autism and their families. Access to empirical data regarding healthcare and education costs differed between the two countries. It is also currently estimated that 45 percent of individuals with ASD in the U.S. and 55 percent of individuals with ASD in the U.K. have intellectual disabilities, defined as an IQ of 70 or less. Experts consistently point to early interventions as key to increasing language and IQ scores, and reducing life span costs.

Total costs to the U.S. were also based on adult prevalence of one-half of one percent, lower than currently estimated 1:110 prevalence of autism in children, derived from past CDC studies. The researchers point to adult prevalence as an area for additional study in the U.S.

The research also found that non-medical costs account for the greatest proportion of expenses. While direct medical costs, such as outpatient care, home care, and pharmacy, contribute significantly to overall expenses, non-medical costs, including intervention services and special education, child daycare, and especially residential placements and care for adults who age out of school and can no longer live at home with parents account for the largest proportion of autism costs.

“The burden on families affected by autism is enormous,” continued Autism Speaks President Mark Roithmayr. “The extraordinary cost further exacerbates that burden. The time and effort involved in coordinating the care and treatment plan across a large number of providers has reduced the ability of many families to earn a living. Too many families are still denied insurance coverage for essential treatments and services, and the economics add to overall emotional burden on families.”

Building on this preliminary research, Autism Speaks recently provided additional funding to Knapp and Mandell to support an additional year of study to examine how autism therapies reduce lifetime costs associated with autism. Their investigation will focus on both intensive preschool behavioural interventions and vocational interventions that support an individual’s independence during the transition to adulthood. Calculations will take into account costs related to healthcare, education, caregiving, housing, and employment.

As confirmed by this study, the majority of costs related to autism are incurred during adulthood, principally due to the cost of residential care as well as loss of productivity, underemployment and unemployment among adults with autism. Services for adults are both lacking and expensive.

Professor Knapp explained that the economic burden of autism varies widely across different parts of society from the individuals with ASD, their families, the communities they live in, businesses in those communities, to the government agencies which provide healthcare, education, welfare benefits, social care, and housing. “There is an immediate need for better coordination across public agencies and levels of government from local to national in the way that society structures its service delivery system; too often responses to the needs of individuals and families are piecemeal and less helpful than they could be,” he concluded.