I am familiar with two studies that make a serious attempt to estimate the costs of autism – one in the USA and one in the UK. These figures look quite alarming: 3.2 million US dollars or 2.4 million UK pounds over a person’s lifetime. The UK figure is used to argue for an increase in our low level of funding for autism research. The US figure is used to defend their significantly higher level of spending. While I support the need for more funding for autism research I have some problems with the way these figures are arrived at and with the way they are used.
These lifetime costs are sometimes used alongside estimates of annual costs to the economy. In the USA this works out at 35 billion dollars. That sounds even more alarming until we remember that
More than 50 million Americans experienced a medically treated injury in 2000, resulting in lifetime costs of $406 billion; $80 billion for medical treatment and $326 billion for lost productivity.
So autism, affecting 2 million people, costs the US economy 35 billion dollars a year. But in a single year, injuries affecting 50 million people cost the US economy 406 billion dollars. Where are the headlines and congressional commitees on that one?
Regarding the figures, the US study assumes a roughly 50/50 split between severely and mildly affected individuals as defined by their monetary cost to society. The much higher figure for average lifetime costs in the UK may be a reflection of the more generous provision of our welfare state. It is also based on an outdated 75/25 split in favour of severe autism. [3 million UK pounds versus 750,000 UK pounds] Epidemiological evidence suggests that between 15 and 20 per cent of autistic individuals are also mentally retarded. These are the ones who are not only unlikely to work but may also require lifetime care in some sort of group home or supported living arrangement. That is the inverse of the UK assumption. So, on closer examination, maybe the figures are not so alarming after all.
We also have to offset the figures for severe autism with the similar numbers of autistic individuals who may eventually become “indistinguishable from their peers” at least in respect of their need for services and support. Tony Attwood (slide 13) argued that maybe 20 percent of autistic children move “up” and possibly “off” the spectrum over their lifetime at the NAS International Conference in London in 2005. And recent research on diagnostic stability tends to support him.
And then there is the nagging question of the CDC enquiry into the
Economic Costs Associated with Mental Retardation, Cerebral Palsy, Hearing Loss, and Vision Impairment
This found the following lifetime costs.
If you add the totals for four children, one each with MR, CP, hearing loss and vision impariment, it is very close to the alleged cost for a single autistic child! Someone is egging the pudding here!
Some of the elements within the figures are open to question. The US figures include 200,000 US dollars for ABA included in medical costs alongside 150,000 US dollars for education. Are these actual or notional figures? How many autistic children get ABA? How many get additional funding for their special educational needs? I have met very few prents who are satisfied with the level of provison for their autistic child.
1.8 million US dollars is almost equally divided between indirect societal costs attributable to the autistic person and indirect societal costs attributable their carers. This seems to be almost entirely based upon loss of earnings and lost productivity. But where are the measures that account for the positive impact of autism on the economy in terms of employing such a vast array of therapists and stimulating so much research into the human brain with unquantifiable impact on the whole area of neurological reasearch? I could also find no indication in either study that that they had attempted to factor in the positive contribution that autistic people might make to the economy.
Yes we do need more money for autism reasearch. But we also need more money for autism services. Presenting autism as a drain on the economy to frighten governments into funding more research into possible prevention and cure does nothing to help existing autistics and their families find support services in the here and now. And if the lifetime costs are so high where is this money going? Why are autistic people and their families so often left leading miserable lives?
If ABA and education do cost a combined 350,000 US dollars for every autistic child why not just write a cheque on the day of diagnosis? Let us see if the parents can spend it more wisely and more productively than the state. At the very least there would be a saving on lawyers fees (on all sides) for contested IEP meetings. And if it costs society 1.8 million US dollars in lost productivity for autistics and their carers just put half a million dollars in trust for every autistic child on the day of their diagnosis. At 5% interest that should yield around 1 million US dollars over 15 years. If we are going to spend so much money on autism, let us spend it effectively.
Joseph blogged the US study a year ago. Please read “Debunking the costs of Autism.”