Saturday, 18 June 2011

What do we know about autism?

There have been, and continue to be, quite a lot of big personalities and reputations that have brought their knowledge and experience to bear on autism research down the years. I don't want to name names but between the Ivy League and Oxbridge set (and the many, many institutions in-between) there has been a considerable body of knowledge generated on many facets of autism. I appreciate that questions still remain as to the extent to which that knowledge has transferred from 'laboratory to real life' and positively impacting and improving quality of life for people with autism. I am however drawn to the various philosophical notions about the time taken from discovery to practical application being generally measured in decades and years rather months or weeks. Sciences it seems, is a slow process.

I say all this because of a fairly recent post which appeared on one of the Psychology Today blogs [who have had their fair share of controversy of late] which, rather pessimistically in my opinion, seemed to suggest that autism research has had its day with regards to the numbers and talent available and involved. As you might imagine I took umbrage at this suggestion, not personally I have to say, but because there are some very, very good researchers undertaking some very worthwhile investigations into autism. Indeed one could perhaps describe the current position as being a bit of a golden age for autism research in terms of the people, disciplines, resources and importantly, funds involved - 'we've never had it so good' to mis-quote one Statesman.

For one of the more contemporary snapshots, of where autism research currently is, I draw your attention to this presentation given by Prof. Sir Michael Rutter as part of the 2008 National Autistic Society (NAS) conference. If you click on the link titled 'Historical perspectives - what have we learnt from research?' you can download the full Powerpoint presentation for yourself. Whilst acknowledging the contribution of Rutter to autism research, including the development of the ADI-R, I have to say I have never had that much direct exposure to his involvement in autism, aside from watching a few tutorial videos on how to correctly administer an ADI. Bearing in mind that a person's particular field of interest and grounding can readily affect their view of a concept/condition/event, there are some very interesting points to take from Rutter's 2008 presentation. For me, some of these include:

  • Validation that autism is distinct from other conditions manifesting behavioural/psychiatric symptoms but can manifest with various co-morbidities.
  • Lower cognitive abilities and a lack of language are key predictors of outcome.
  • The existence of a broader autism phenotype (extending into non-clinical relevance).
  • Autism is not, generally speaking, a localised brain abnormality.
  • The finding of increased head size in some cases of autism reflects increased brain size.
  • Genetics are (variably) important but autism can also arise from other medical conditions.
  • The validity of the concept of regression in autism.
  • A lack of convincing evidence of a neurochemical or immune abnormality specifically associated with autism.
  • A lack of convincing evidence that medication impacts on core symptoms.
  • A lack of convincing evidence of EEG patterns specifically related to autism.

I have posted about a few of these issues before (regression, medication, etc) and am planning some future posts on some of the other details mentioned. Rutter does discuss quite a few other things in his presentation and I would encourage readers to view the whole document (if anything else just to see what I cherry-picked). Reading through this list, one might get a slightly negative impression of the state of research, what with the repeated use of the words 'lack of..'. I don't however see it this way. I see something rather more interesting; much of which goes back to the various issues around the heterogeneity of autism and the different presentations of the autism: autism is not autism but rather autisms.

It is perhaps interesting, but not unexpected, that Rutter also embraces the concept of gene-environment interactions in relation to autism. Anyone who has read his papers on Romanian orphans presenting with an astonishing rate of autistic behaviours (present in about 6%) will understand why he adopts such a position. Indeed, in his latter slides on the 'puzzles and challenges' remaining he asks some very reasonable questions on the impact of advancing paternal age, immune effects over neurotransmitter effects, the role of environmental agents and, knock my socks off(!), whether or not diet could play a role in some cases of autism and why.

I appreciate that it is easy for me to sit at my computer and churn out posts like this 'celebrating' what a wonderful job science is doing for autism, research-wise, whilst people with autism, their parents, guardians and families face daily challenges related to lots of different aspects of autism. In no way do I wish to take away the reality of what autism means to many, particularly in light of these tough economic times. From a research perspective, I do however feel optimistic that there are considerable numbers of people, talent, resources and money who are genuinely concerned with discovering more about autism, and who continue to contribute to the all-important research base from which Government and Society can formulate suitable policy to ensure that the relevant support and opportunities are available to all people on the spectrum.

2 comments:

  1. The subject of this post hits a bit of a nerve for me, so this probably keeps me from fully appreciating the big picture. I greatly appreciate the research that has happened, but the mainstream medical community has drug their heels on looking at it. Our child is a gi/diet responder, and I mean obvious gi issues since 1 week of age and miraculous diet responder. We don't have access to a DAN, we researched and did the dietary thing on our own, and had to fight almost every inch of the way to get him the medical help he needed. We were lucky to have some professionals listen to us, accept the medical research we printed, and truly try to help his medical conditions, but that was after losing valuable time with others who wanted to write everything off as part of the autism. Then, when he responded to his diet, it was explained as "he was just shy or an only child", and many still think we are holding him hostage to his diet. The media reflects this and much of the mainstream medical community is happy to go with it. It's like the Emporer's New Clothes, except the opposite, everyone pretends they don't see the growing evidence (this is also true of ADHD and diet). As a parent I think they would rather turn their back than really get excited that diet may really help some kids. I want to suspect its a "follow the money" issue and that diet is a threat here. I think the big societal picture is that we are in the age of instant gratification. The "take a pill" style of "healthcare" caters to this. Autism is so multi-faceted that it doesen't fit the current style of thinking. Diet is a huge lifestyle change and it threatens this way of thinking as well. I think there will continue to be a big resistance to this while research continues to trickle out in spite of it. I think enough fire will be put under some bottoms only when enough parents wise up and demand it.

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  2. Thanks for the comment. Being a long time supporter of the role of diet on lots of different things I find it hard to disagree with what you say. From the UK perspective, things are slowly changing from quite a lot of historical hostility towards diet affecting mental and physical health to a more 'open-minded' perspective following something like the PKU example (also in areas of ketogenic diets and epilepsy). The evidence for this is in areas like the proactivity of our British Dietetic Association and their working party on diet and autism who I am reliably informed will be contributing something to the upcoming national guidelines on autism (by NICE). Similarly in the States, whilst not being privy to all the goings on, I found the Autism Now documentaries on PBS to be a bit of a turning point in terms of an acceptance of bowel issues being relevant to some cases of autism and also how diet may play a hand in this.

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