Really Big Numbers: The "Costs" of Autism

A new study in the May 2009 issue of the journal Autism estimates that, in the UK, the annual costs of providing services for individuals on the autism spectrum are more than £27 billion a year. The costs of supporting children were estimated to be £2.7 billion per year; the costs for supporting adults were £25 billion. As reported on PhysOrg:

Costs were based on estimates for 539,766 people with ASD in the UK: 432,750 adults (aged 18 and over) and 107,016 children and adolescents (aged 0-17). There was no single, nationally representative data source in the UK looking at these costs, so the researchers combined existing data estimating prevalence; intellectual disability; place of residence; service use; lost productivity; and costs per individual. Average annual costs were also aggregated to estimate the lifetime cost of someone with ASD, calculated by combining costs for different age groups with life expectancy estimates.

The costs of supporting children with ASDs were estimated to be £2.7 billion per year. For adults, these costs rise to £25 billion each year. Lifetime costs for someone with autism were calculated as £0.8 million for someone with autism without intellectual disability, and £1.2 million for someone with autism who was also intellectually disabled (50 percent higher).

Significant costs were attributed to public services. For children, the highest costs were for special education, health and social care and respite care. 95 percent of the total national cost for children was accounted for by services funded by the state, and 5 percent by family expenses.

For adults, the largest cost elements were staffed/supported accommodation, lost productivity because the individual with ASD was not employed, and hospital services. For non-intellectually disabled adults, the largest elements were lost productivity for the individual, hospital costs, and lost productivity for parents. 59 percent of the total was attributable to publicly funded services, 36 percent to lost employment for the individual with ASD, and the remaining 5 percent to family expenses.

The study was conducted by Professor Martin Knapp of the London School of Economics and can be read in the May 2009 issue of Autism, for a limited time.

A 2006 study by Michael Ganz, Adjunct Assistant Professor of Society, Human Development, and Health at the Harvard School of Public Health, estimated a figure of $3.2 million is needed to take care of an autistic person over his or her lifetime.

These are huge figures, needless to say. They're not exactly news to individuals on the spectrum and their families, who know that services and supports are neither readily found nor well funded. I think it's very important to note that, as the new study about the UK states, "for the adults the largest cost elements were staffed/supported accommodation, lost productivity because the individual with ASD was not employed, and hospital services." [my emphasis] So if we bite the bullet now and provide education, training, and supports for children and individuals on the spectrum to be able to be employed, and to have as much independence as they might have, many lives will be fuller and simply better.

And while I know we have to be realistic and plan ahead to provide for my son, who falls into the category of "someone with autism who [is] also intellectually disabled," I shiver at turning him into a number; into a "cost." Sure, we've spent, and we keep spending to provide for him but these are not "costs" to Jim and me. They're simply what is necessary to help our son and provide him with the education and services that he needs. He is not a burden, but the reason why Jim and I know that life is full of the best kind of riches.