Thursday 31 May 2012

Autism Research - What's the point?

I recently attended a series of lectures and workshops centred on determining effective interventions when working with people on the autism spectrum. The initial lecture by a noteworthy expert in the field was about evaluating research and I half expected a Ben Goldacre style run through of statistical interpretation, double-blinding and controls. Instead the primary messages were that we should acknowledge the experiences of the individual and that “a lack of evidence of effect is not evidence of a lack of effect”.  As a theology graduate I’m aware of this latter argument in relation to the existence of a deity, but I was disappointed to hear it in the context of a lecture hall of practitioners studying to improve their knowledge. Was she saying that even if the research on the intervention shows no efficacy that we should consider it anyway, and if so why should this be?

There are some major problems in autism research. I’m sure that many of these are replicated for other conditions and are merely the result of poor design, but some are caused by the particular nature of autism. As explained in a previous post, autism is a broad spectrum and just putting out a call for test subjects that are autistic will return a wide range of variations on the theme. This is difficult to control for without careful individual profiling. If you perform in-depth profiling for selection your choice has then been narrowed and getting access to large enough samples of similar subjects can present yet another hurdle . This whole situation might become even more problematic with the proposed changes in DSM-V which will further group a wider variety of developmental disorders under the label of “autism” making distinction increasingly complex.

This isn’t news of course and the National Autistic Society in the UK have established Research Autism to address some of these issues, promote good quality research and evaluate that which is already out there. They have a useful page on ways that research can go wrong and they also have a fairly comprehensive list of available therapies and treatments with an accompanying rating system based on the quality of the research in place to support them. They say that this isn’t a recommendation guide but it makes very interesting reading nonetheless.

The range of treatments and approaches on offer is vast and includes medication, psychological, physiological, behavioural, diets and supplements, communication enhancement and many more. The full alphabetical list of everything that Research Autism can find that has been used in this arena currently stands at a total of 962 different variations of possible treatments. Most of us would find it impossible to work through even a small portion of these, analyse the research and draw conclusions as to the most likely to be effective. They can’t do the lot either, but they can start at the main ones and it’s good that they do.

Over in America the largest autism advocacy group by far is Autism Speaks. You can see that it too is involved in supporting many scientific trials; however its list of “not actually recommended” treatments is much shorter and less specific. They seem to have narrowed it down to the ones that they feel are safest and, you would think, most effective. The organisation is a strong advocate of the Applied Behavioural Approach (ABA) which is now pretty much an umbrella term for a variety of behaviourist techniques such as the Lovaas Approach. It’s a popular and well used system with a lot of research behind it and good evidence for efficacy with some people. ABA is not without its critics though as some reject its overt behaviourism as imposing neurotypical expectations onto the individual with autism. Also given the diverse nature of autism it won’t work for everyone.

Better advice on the day came from a different speaker who told us that much of the research was pretty poor so we had to be critical of what we read and should look at all the factors to determine if a study was any good. She then advised that as the spectrum was so wide that no one approach is likely to work with everybody and as practitioners we should be tooled up with a selection of methods that we can use in our work. This seemed both practical and logical.

As ever most of the terminology in this field has negative connotations. Treatment implies an illness or disease, intervention that somebody is doing something wrong. It is difficult to leave the language of autism as a deficit behind and easy to dismiss concern about this as political correctness gone mad. Language is important and can both betray and influence opinion. An interesting blog to read on this subject is Michelle Dawson’s Autism in Crisis who challenges many aspects of the research and conclusions drawn around Autism.

The weakness in much of the research, absence of definitive cause and the lack of a universal palliative leaves the door open for all kinds of therapies to push themselves forward, and push they do. The door is kindly wedged ajar by advice such as that from Autism Speaks on their Complementary and Alternative Approaches for Autism page. Whilst being very careful to emphasise that CAM therapies are not thoroughly researched and should not replace standard medicine it does give the impression that they shouldn’t be totally discounted due to lack of evidence of efficacy. It then helpfully lists a number of pilot and small scale studies that it says show some promise. I’m not accusing them of wholeheartedly endorsing quackery but if falls far short of offering any substantial warning about some of the more dubious remedies that are on offer and lends, at the least, tacit approval to those it lists. It’s only my opinion but this fails in terms of what you would expect from a major resource that for many people is the first port of call for information and advice.

It can be uncomfortable, challenging the beliefs of parents and carers who are emotionally invested in their children. Or even disputing with adults themselves that are on the spectrum and wholeheartedly believe that their “recovery” is due to some miracle cure beyond the comprehension of science or hidden by Big Pharma. I’m not even saying that we should discount personal experience as in itself it can be an important launch for some new advance. If promising it could lead to a small scale study that might provoke more interest. This could then lead to a better designed trial and so on until we have some solid evidence of efficacy or not and we can then make a rational decision on how to progress. That would be wonderful wouldn’t it? However if we now apply our initial mantra that a lack of evidence of efficacy is not evidence of a lack of efficacy and that we should pay great heed to personal experience then what is the point of any of it?

Personal experience and peer support is extremely valuable but it needs to be moderated in respect to treatments and interventions. Guidance and education on how to evaluate claims is often missing from much of the literature and many of the support groups that proliferate the Internet. In the next post we will look at some of the so-called cures on offer and the ideas behind them.

This blog post was written by Patrick Redmond (@paddyrex)


Unknown said...

Really interesting, Patrick. Thank you. You've summed up problems that are common to many areas of research and I saw parallels with the work I was doing with kids from the BCH and then Aston's Dyslexia 'clinic'. Looking forward to you next post!

@paddyrex said...

Thanks Tulpesh, writing a post like this is useful for a non-scientist like me as it helps to work through ideas. Always glad to get feedback.

Wilson Wedlock said...

It actually doesn't make much sense if we consider "not taking effect taken as the opposite" because if that's so, then all logical reasoning of the past researches would be null. That must be why people are outraged by the practitioners themselves to propose such an idea.

@paddyrex said...

I think that amongst some practitioners there is a fear of contradicting parents and carers opinions. In much of education parents are labelled as the "experts" regarding their children. In many cases this is the case, but sometimes it isn't. Or the success that they have with their charges may not be for the reason that they think. They may be focussed on one treatment or another and ignoring all the other environmental factors that are impacting on the progress of the individual. This is why we need people to be aware of how to understand the interplay of different factors and to be able to make a reasoned judgement. Unfortunately it's not always so easy to find that voice of reason and guidance.

Anonymous said...

Treatment, therapy, intervention.

My biggest problems are the jobsearch process and dating. I can live without dating. Jobsearch doesn't mean working, it is the process of applying for a job that trips me up. As near as I can tell, the people processing applications have to assume that applicants are neurotypical, in order to assess if the person is likely to be a good employee. Worded another way, the person processing applications has to discriminate against me in order to process my application. Why is it that I am the person that needs treatment, when it is society that has the problem?