Monday, 7 March 2011

Lines and random errors

You may have to stay with me on this short piece which is another one of my 'other musings' postings. I am going to try and show how information spreads, and how subtle changes to that information along the way can distort the original message. I will admit that I am not the first person to discuss this; but from a research point of view it is a simple yet interesting experiment which is transferable to many situations.
First, follow this link and watch the video titled "a sequence of lines traced by 500 hundred individuals'.
OK, so what did you see? In the UK it's a version of what we call 'Chinese whispers' (I know, not very politically correct), in the United States 'Telephone'.
What is shows is that over time even the simplest thing can become complicated very quickly; sometimes to the point where the original message is replaced by something altogether different as a function of different interpretations.
The Huffington Post article has created quite a stir over the use of this experiment as a metaphor for the evolutionary process. I am not really buying into that given the simplicity of the experiment.
So, the next time you are presented with information via a second or third party (newspaper, press release, blog, etc), try and go to the original information source.

Asperger syndrome and Marc Segar

It's an easy thing to do when you are writing a research paper or a blog like this. You write the words to your post with the hope that people will read them (why else do people blog?) without sometimes fully understanding that to some people the words are not just words; they are much more personal than that.

Take for example my previous post on the proposed revisions to DSM. To me the various discussions on DSM and what form it will take in future, are of professional interest; the way that science is trying to 'improve' itself and refine its diagnostic criteria (hopefully on the basis of best available evidence).

To someone with autism or Asperger syndrome they are however much more than that. For those already diagnosed with Asperger syndrome for example, I could imagine (I can do only that) that the DSM proposals could be construed as a 'challenge' to their diagnosis and onwards to the 'identity' that the diagnosis confers, particularly as disparate from the more classical 'Kanner's autism'.

a child who perhaps has not even been conceived yet, who will one way or another reach the diagnostic threshold, the DSM changes if adopted, will shape how they view themselves and how they are viewed as 'a person with an autism spectrum disorder' rather than perhaps a person with Asperger syndrome (if presenting at the more able end of the spectrum).

I say all this because whilst admittedly on the 'outside looking in', there have been times when meetings, discussions, interactions show that words are not only words, they are much more than that.

One such occasion when this happened to me, was when I met a young man called Marc Segar. Marc was a young chap with Asperger syndrome who I met many years ago. He was a quiet, unassuming fellow and I remember whilst at a conference, sitting down and talking to him about lots of things, some to do with autism and Asperger syndrome, others to do with nothing in particular.

I was reminded about Marc following some recent discussions that were raised on the web about the resources available to help people with Asperger syndrome to 'cope' with various life situations and events. The hints and tips provided in this particular discussion were interesting and no doubt useful to some.
They did however get me thinking about Marc and a particular document he wrote about his experiences of Asperger syndrome called 'A survival guide for people with Asperger syndrome'.

The guide, which is free-to-view can be accessed here. It was written sometime in the 1990s and is, I think, an excellent read in terms of its content and applicability to real life scenarios. It was probably one of the original 'first-person' accounts of Asperger syndrome, but more than that, it was a very logical list of answers to questions about things and situations which to many (not all!) non-autistic / non-Asperger people are simply assumed.

I don't think there is anymore to say about this, so please read it and if you think it would be useful to anyone, pass it on.

Saturday, 5 March 2011

Kill your television

It happened again. There I was happily sipping my cup of tepid tea (as we English have been known to do) and browsing the web on a pleasant Saturday afternoon when gasp, a headline emerges from the internet ether - 1 in 60 kids suffer from autism spectrum disorder. Who, where, what and when are the questions that immediately sprung to mind.

Not so long ago I blogged about a media release discussing whether rates of autism are epidemic or not. My main beef with the previous article was the use of a message ('no autism epidemic') without any means of corroborating the accuracy of the statement (i.e. a link to some published research). A quick gander through this latest offering posted on-line in The Times of India regarding the rates of autism in India - the press coverage can be viewed here - stirred similar feelings to that of the last offering.

Scrolling down the article, we find the information is communicated by a Paediatrician attached to a Medical facility based in Chennai, India. If true, not only is it potentially in direct conflict with the previous press release of 'no autism epidemic' statement but perhaps more importantly it is an absolutely astounding prevalence rate, particularly if also applied to the gender ratio gap in autism.

Looking through the article however there is unfortunately no link to any published research; in fact no indication of how this figure was arrived at or whether the report is based on anything other than an opinion. Granted, I understand that there is always some journalistic 'flair' involved in any story, including as a catchy headline. But should this really be an excuse to print without corroborating evidence?

There have already been a few comments posted against this story on the on-line source. Interestingly up to this point, no one has commented on the source of the 1 in 60 figure; most people are finding a little bit of a problem with the explanation: 'excessive television watching' leading to a failure to interact with family members as a cause of autism. I will come back to this shortly.

Suffice to say that having conducted a search of the published literature available on prevalence rates of autism in India, at the moment I cannot find any published reference corroborating the 1 in 60 figure. In fact I can't seem to find anything approximating a current estimated prevalence rate for autism in India, aside from a comment in a paper from 2010 about a plan to start looking at the epidemiology which at the moment remains just that, a plan.

Anyway, back to the comment about TV causing autism. Mmm, where to start, where to start. Well, first there is the old adage of correlation not implying causation. I have discussed this issue in a previous post and so won't dwell on it too much. The literature on TV and autism covers quite a lot of ground, mainly from the point of using television for things like social skills training. A recent study from Thailand has also looked at TV viewing habits for children with autism compared with controls and concluded that TV viewing for children with autism started earlier, lasted longer in duration and interestingly, included more adult programmes (I assume this means more documentaries et al rather than the other 'adult' content). How far this is applicable to a non-Thailand population remains to be seen.

The question of whether TV causes autism has been asked by previous authors so is not a new question. Then, as now, the main issues coming up against any 'universal' effect of TV is the question; does TV 'cause' autism or are children with autism more likely to watch TV as a result of their autism?

I try to stay impartial on this blog, letting the evidence speak (obviously with the caveat that science is about probability not absolutes). On this matter I am leaning towards the latter position suggestive that autism is a predisposer to increased TV viewing rather than TV being a 'causer'.

I know that there is a body of research suggestive that too much TV can be bad for child development and one cannot discount that this may produce some effect alongside the 'sedentary lifestyle' aspect. But like all things, there are two sides to every story. Many of the TV programmes for younger children over the years (covering the same time period as the increase in cases of autism?) are geared to improve various aspects of child development. If not why are the BBC for example, investing so heavily in CBeebies and programmes like Something Special and Waybuloo and their drive towards 'better' psychological health and development?

More research is perhaps needed in this area, specifically into whether TV has any contribution to autism given the dyadic interaction required between 'man and machine'. But perhaps also such research should be conducted without the demonising undertones that have blighted our relationship with our favourite gogglebox and without the sweeping statements about TV causing autism.

Friday, 4 March 2011

Do you see what I see?

Do you see what I see? It's a simple question. If I look out over the countryside and see the fields, the sun (perhaps not the sun so much here in the UK), how can I be sure that you see exactly what I see? Answer: I can't. For all I know a million people will see a million slightly different versions of the same view; different from what I see as a result of the visual information captured and also what our brain does to those signals.

I recently wrote a post about the suggested changes to DSM V with regards to autism. One of the more welcome proposals to the DSM revisions is the inclusion of a sensory aspect to one of the diagnostic domains, attentive to the growing literature highlighting this particular issue. Although the types of sensory and perceptual issues related to autism detailed by many authors (including those diagnosed with an autism spectrum condition) are wide and numerous, some relate to the visual field.

A few years back, Donna Williams wrote a book called 'Like colour to the blind'. In the book she discusses her various experiences of her autism and in amongst her autobiography, her experiences of her visual perceptual field and her eventual diagnosis of co-morbid scoptic sensitivity syndrome. I remember seeing Donna talk many, many years ago and also remember quite vividly her colour-tinted glasses. Those who have seen Dr Wendy Lawson talk about her experiences of autism might also recognise Wendy's tinted glasses too.

Tinted spectacles (or Irlen lenses as they are often called) are no new thing. Evidence has been emerging for some years that conditions manifesting reading difficulties such as dyslexia may benefit in certain tasks from such an optical intervention. The evidence base is quite large.

When looking at the experimental data relating to the use of tinted lenses specifically in relation to autism, the evidence base gets progressively smaller. I found only a handful of references; the most cited one being this article examining the use of coloured overlays in autism, again with regards to reading comprehension.

The reason why this is relevant relates to the reasons why such lenses are primarily being used. For reading disorders, the general consensus seems to be that tinted lenses can be quite a good way of improving word and reading comprehension for some people. Some authors have attempted to describe the mechanisms as to why they might work (frequency of colour, perceptual filtration, etc) but ultimately we don't really know the full story.

In the case of autism, many people using such lenses however describe other reasons for wearing them. Again, Donna Williams on her website describes them as being useful to: ".. increase the ability to keep up with a greater range of visual information" and "help to better keep up with receptive language". The suggestion from Donna and other accounts from people with autism is that tinted lenses work on other (albeit potentially related) areas; more fundamental to the live streaming physical world outside of just the printed word, and also perhaps multi-modal - visual perception influencing speech perception for example.

I know that there are other aspects to vision perception and autism which are covered in this area such as the use of ambient prism lenses and let us not forget classical problems with the eyes that anyone of us can experience (autistic or not). There is a however a big void in research into this important area for autism. Given the growing recognition of sensory and perceptual issues in relation to autism, one would expect that there are good grounds for some revealing insights to be had from further investigation.

Sex ratio and autism

An article delivered as part of my almost daily BMC journals email update caught my eye this morning, reporting on the sex-biased brain in birds (the feathered variety). It got me thinking again about the sex / gender gap in cases of autism spectrum conditions and all the various debates contained in this issue - the sex ratio, the genetics of it, the psychological theories about it and the diagnostic issues around it (girls perhaps less likely to be diagnosed, variable effect of symptom severity & learning disability, etc). My interest in this issue has been stirred over the last few years; not least because we published a paper on it and also within psychological circles there has been some debate on the nature of studies and theories put forward to explain it. The more recent publication of results related to RORA add to my interest.

It has probably been one of the only major consistencies in autism: males are more likely to be diagnosed with an autism spectrum condition than females. It is almost written in tablets of stone that the gender ratio in autism is roughly 4 males to every 1 female (not including Rett syndrome) right from the earliest report by Kanner.

More recently however there have been a few studies critically questioning whether the 4:1 ratio is indeed the best estimate we have of the gender gap or whether perhaps the rates are changing.  Our own data (which I won't talk about too much for fear of being accused of being a self-publicist) suggested that the overall rate of all autism spectrum conditions in the UK/Ireland (autism, Asperger syndrome, ASD) between 1986-2007 was 7.38:1. When we looked at the individual diagnoses there were also differences: autism = 6.54:1, AS = 12.07:1, ASD = 6.84:1). Similar data from Cambridge University suggested that again in the UK, the overall rate was around 4:1 (for children born between 1988-1993) but (and it is an important but), the sex ratio fluctuated between 3:1 and 8:1 depending on schooling-type (determined largely by ability). A final dataset for the UK derived from the ALSPAC study concluded that in this prospective study, the gender ratio for autism cases between 1991-1992 was 6.8:1.

So there we have it (at least in the UK). Various data derived from various methodologies plotting quite a different gender ratio from that originally established. Of course there are other studies that confirm the 4:1 ratio and so I could be just cherry-picking here. There are a few methodological caveats to all of this of course relating to how and what we diagnose, how autism is viewed and the important issue of co-morbid learning disability.

I will perhaps end with one final question: where is the gender ratio in autism spectrum conditions heading? Again back to our data (sorry!), plotting year-on-year over the course of our study, there appeared to be an increasing gulf opening between the sexes in terms of diagnosis. Why this is happening has not been established. Is it genetic (remember our CNVs)? Is it something environmental? What will happen if the DSM V changes are implemented and Asperger syndrome disappears from future diagnostic literature?

There are a lot of interfering variables in this debate.

Anyway back to my songbirds.

Thursday, 3 March 2011

Delivering the evidence-based medicine message

This is a slightly off-topic post for this blog. I say slightly off-topic because it does not specifically relate to autism spectrum conditions, although the general theme of the posting may hold some relevance.

I blogged recently on the welcome involvement of the National Institute for Health & Clinical Excellence (NICE) in the development of National guidelines relating to various aspects of autism. In case you don't know, NICE are the agency in the UK who deliver guidance on all things relating to health and disease. NICE accomplish this via the development of guidelines based on the best- and most current available evidence.

The reason why NICE are relevant to this post, is the connection with evidence-based medicine (EBM). EBM works on the premise that science delivers recommendations. It's as simple as that. What the results of properly-conducted, properly-controlled, properly-reported studies tell us, should guide our actions, whether preventative or restorative, in relation to health and ill-health.

OK, we all know that we are not the same. Our risks of ill-health, disease (and death) vary wildly as a function of our genes and our environment. Hence EBM works on the idea that we are 'mostly' the same and that one or more recommendations will work for 'most' of us (via the normal distribution) - the common good - if you are unlucky enough to be one of the ones at the periphery where EBM does not work..erm, pass.

Recently, I have come across a few examples where EBM has perhaps slipped up. I say slipped up but EBM is not really to blame, rather our interpretation of EBM. An article appeared in one of the January 2011 issues of The Pharmaceutical Journal (vol.286, pp.19-20) by Rod Tucker (a community Pharmacist). In the article, Tucker deconstructs some of the 'myths' about what keeps us healthy. It is an interesting read. He discusses various research on the 5-a-day slogan, the role of fat in health, exercise in weight control and alcohol consumption and health. His conclusions: 5-a-day is 'unlikely to protect us against cancer or chronic diseases' (8-a-day might have some impact on risk of heart disease), there is little convincing evidence that saturated fat is 'particularly harmful', working up a sweat in the gym 'will not shed that spare tyre' and the safe limits for alcohol are 'somewhat arbitrary'. Remember this is a practicing Pharmacist saying all this, not me. The issue of fat in our diet has also been covered by other bloggers and may be relevant to autism (we wait and see).

The second example comes from a very recent posting suggesting that there is a greater risk of death in people with type 2 diabetes from lower salt consumption. You read it right: lower salt consumption is associated with a greater risk of death in this group (no, it is not an early April fool). This is written by a physician, not me.

At this point I will stress that I am not advocating any of these readings of the evidence; rather just reporting them (please do not start tucking into that block of beef dripping whilst glugging down that bottle of gin whilst sat reading this blog for hours on end). Here however we have two reports which cover a number of lines of good evidence that are contrary to current thinking and guidelines. Guidelines which are supposed to be governed by EBM but rather might seem at odds with what the current science is saying.

One could forgive the fact that science is based on probability not absolutes and that there are perhaps other issues involved in the EBM decision-making process. For example, fruit is a good source of dietary fibre and fibre is good for bowel health (keeping you regular). Safe limits on alcohol are there also to demonstrate the long term effects of sustained use on organs like the liver; also the societal effects following over-use (Friday and Saturday nights in most Casualty departments in the UK are a good example).

There are no easy answers as to why we have taken the EBM decisions that we have - sometimes seemingly at odds with what the evidence states. One could argue that indecisiveness and changing of opinions perhaps erodes the authority and the message being put forward. Readers in the UK might remember the BSE story and that child, that burger and that Minister. Can you imagine if the Department of Health came out and said that 5-a-day is not really all it's cracked up to be?

On the other hand maybe this has got more to do with how the message is put across. Telling people that A causes B and that C will effect D in such a 'universal' fashion whilst simplifying things also makes it very difficult to say 'hands up, we were wrong'. Perhaps the way the message is delivered should change. Perhaps the way to approach delivering such EBM is just to say: we are all different, we are all diverse and this what will probably work for most of us but not all of us?

I leave with a quote from Rod Tucker: "the stress of worrying about what to eat and drink is more likely to bring about an early demise than trying to change our current dietary habits".

Right, now where is that cream bun.