The bean counters of autism (part 2)

Consider this post an update to my previous discussions on the economics of the autism spectrum disorders (ASDs) published a few years back (see here). The interest in 'what autism costs' from a monetary point of view has been rekindled following quite a bit of media discussion on the study by Ariane Buescher and colleagues [1] (open-access here) including a piece posted on the BBC website and a write-up in the Guardian newspaper with quite a sensational headline: Study says cost of autism more than cancer, strokes and heart disease. The Buescher paper concluded that there was a "substantial direct and indirect economic effect of ASDs". An accompanying editorial from Shattuck & Roux [2] on the Buescher paper is also worth a read too.

The main points from the Buescher paper are pretty visible in the paper and accompanying media, but include:

• The estimated lifetime costs of supporting someone with autism and accompanying learning disability (intellectual disability) comes in at about £1.5 million here in the UK and $2.4 million in the United States. For those with no accompanying learning disability, the costs are estimated at £900,000 in the UK and $1.4 million in the US.
• The total estimated cost of autism in the UK is roundabout £32bn per year mostly associated with adult costs. Indeed, with only £3bn of that £32bn estimated to be directed to children with autism, there is a rather large gap very much apparent, bearing in mind that "individual productivity loss" (lost employment) made up a sizable proportion of the adult cost estimate. This is a hot topic in autism at the moment.
• Medical costs also get a mention and the fact that: "Medical costs were much higher for adults than for children".
• Some discussion is also made of the amount of money dedicated to autism research. The Guardian report on this paper notes: "In the UK, £4m per year is spent on autism research, compared to £590m on cancer, £169m on heart disease and £32m on stroke research". I have to say that I'm not a great believer in making such comparisons given that there is quite a difference between something like autism and what falls under the heading of heart disease or cancer for example. Although perhaps placing a person at some [variable] increased risk of early mortality through comorbidity or the issue of wandering, autism is not for example, generally a life-limiting condition as the other diagnoses can sometimes be. Nevertheless, £4m spent annually on autism research here in the UK is a meagre sum; about the same as some football (soccer) transfers if I were to use another comparator.

There is always a danger that such studies of finances risk stigmatising a condition and resigning individuals - the many faces behind these figures - merely to statistics. In these days of continued austerity, the sum of £32bn is no small amount but one has to be slightly cautious about the figures arrived at (mostly estimates) and in what context such sums of money are used. I can speak from seeing one of the adult services available here in the UK that costs can be high but these are often offset against providing educational, residential and medical services which can very much positively impact on a person and their quality of life, and by proxy, the extended family too. Parents, siblings and other family members are more often than not tax payers (and voters!), and in the spirit of at least one arm of our welfare system here in the UK: availability from cradle to the grave and free at the point of need (see here) are important concepts to bear in mind.

I note that the inequality in autism research vs. autism services spending has already surfaced in some of the discussions on the Buescher paper. An "unacceptable imbalance" is the way one commentator put it complete with stark comparison of research spend vs. services spend. My mind wanders back to the recent Pellicano paper on autism research priorities here in the UK (see here) and how the identified goal of research making a difference to day-to-day life figured so heavily in that consultation. Again, I think we have to be a little bit cautious here in terms of the aims and objectives of autism research and the territory where such discussions can potentially head into. I would like to think that alongside the noble sentiments of a research agenda making an impact on day-to-day living, the Buescher findings might also open up wider discussions about things like the notion of plural autisms and onwards how research could better start taking into account factors like best responders to certain interventions. One might also think that a greater focus on differing developmental trajectories including those 'optimal outcomers' would be more forthcoming if one truly wanted to see how autism may not necessarily just be defined by an economic cost or financial burden.

"Parental productivity loss" is also mentioned in the paper, and an important concept this is too. Other media pieces on the Buescher paper talk about the effect of caring for a child or children with autism, and how jobs and careers are sometimes left behind [3]. I don't say this to further stigmatise or apportion blame, but the reality is that for some parents, quite a few parents [4], quitting employment in order to care for a child/adult happens and happens often. This can have obvious financial effects on the family and perhaps just as important, might also influence issues like stress levels too.

There is little more to say about the Buescher study and it's implications. I would perhaps reiterate that whilst the headlines of this study talk about counting costs and the "search for effective interventions that make best use of scarce societal resources", one should not lose sight of the fact that behind the figures and sums are real people and real families often struggling with severe financial hardship on top of various other challenges. I do believe that as a society we are becoming better at helping those with autism and their families to live rich and rewarding lives but would prefer not to see too many more studies just boiling autism down to an economic cost.

----------

[1] Buescher AVS. et al. Costs of Autism Spectrum Disorders in the United Kingdom and the United States. JAMA Pediatrics. 2014. June 9.

[2] Shattuck PT. & Roux AM. Autism: Moving Toward an Innovation and Investment Mindset. JAMA Pediatrics. 2014. June 9.

[3] Montes G. & Halterman JS. Child care problems and employment among families with preschool-aged children with autism in the United States. Pediatrics. 2008 Jul;122(1):e202-8.

[4] Ouyang L. et al. A comparison of family financial and employment impacts of fragile X syndrome, autism spectrum disorders, and intellectual disability. Res Dev Disabil. 2014 Jul;35(7):1518-27.

----------

Ariane V. S. Buescher, Zuleyha Cidav, Martin Knapp, & David S. Mandell (2014). Costs of Autism Spectrum Disorders in the United Kingdom and the United States JAMA Pediatrics : 10.1001/jamapediatrics.2014.210