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
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
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)