Wednesday, 17 August 2011

What does the Internet tell us about autism?

The recent 'discussions' (and continuing saga) between Dorothy Bishop and Baroness Susan Greenfield on any possible connection between Internet use and autism got me slightly hot under the collar, and no, not in a good way. The suggestion from Greenfield that our embracing of the digital world might somehow be linked to the rise in autism prevalence has been quite widely questioned, and perhaps rightly so.

Reading her piece in the New Scientist, I did however see some interesting points that Greenfield was trying to raise about how we need to have more dialogue on how technology might potentially be involved in our 'adapting' biology as it definitely is on our social and cultural world (see the recent London riots as one example). If one accepts a Darwinian version of evolution, one must accept that we are constantly adapting to the environment presented to us and that environment, physical and cultural, has changed pretty substantially over the past 100 years or so, even during the past 30 years coinciding with the technological age. A recent programme on BBC Radio 4 discussed a similar issue. Correlation however does not imply causation.

Away from that particular duel, in this post I want to briefly discuss the role of the Internet in relation to autism, from the perspective of this paper* by Reichow and colleagues recently published in JADD which sought to tell us about the characteristics and quality of autism websites. MJ over at Autism Jabberwocky has already covered this paper and I would strongly direct readers to the post (here).

Anyone who uses the Internet knows that whilst it is an incredible source of information for good, one can find misinformation and bad in equal, dare I say greater, measure. According to Google Insights for Search, the top search term for autism (aside from just 'autism') in 2011 so far is the term 'symptoms of autism'. Try typing it  in and see what you get. OK, now try and type in something like 'autism causes' and see what you get. I would wager that you probably might not be in total agreement with all the information presented to you from this particular query.

So it was with the Reichow paper, where Government sources denoted by a .gov web address were generally determined to offer the more accurate information about autism. This paper offered similar advice when using Google for more general healthcare advice. When I say accurate, I mean accurate from the point-of-view of what the professionally-accepted opinion of autism might be. Indeed this is perhaps one of the problems when information is 'graded' according to accuracy: who decides what is accurate and what is not and how do they do it?

One could perhaps see that in a widely heterogeneous condition like autism, where presentation is so varied and aetiology potentially also different in different phenotypes, universal constants might be few and far between. Combined with increasingly large volumes of research constantly being produced and perhaps overturning some of our widely-held beliefs about things like genes and environment or sibling recurrence of autism for example, you can see that accuracy is perhaps a more fluid concept than many people realise.

Whilst I am all for accuracy and science being communicated properly, I wouldn't necessarily suggest that information about autism or lots of other things be solely derived from Government or professional sources. Why? Well one need only read through the blog list at the foot of this blog to see that many other sources of information, first-person, second-person, research-based, lay opinion, can provide accurate (yes accurate) and up-to-date information which one would never get from merely towing the party line. Moreover in previous posts I have come across information which whilst from professional sources was nevertheless inaccurate and how accuracy and opinion aren't necessarily built on overwhelming evidence. No-one is infallible is perhaps the key take-home message.

One resource that I would hope will help at least here in the UK are the upcoming streams of advice to be provided by NICE. For those who are interested, here is a link to my 'NICE to see you' post from a few months back on exactly what is being looked at and how far a long things have progressed.

A feel-good tune now from the Carpenters who are on top of the World (feel free to sing along).

* Reichow B. et al. Characteristics and quality of autism websites. JADD. August 2011