Friday, 8 April 2011

Intervention and autism

This week's posts seem to have been dominated by a common theme: intervention.

We had the Pediatrics review of interventions for autism and then the evidence-based practice posting yesterday. Don't get me wrong, I am not obsessed with intervention and autism. It has purely been chance the way things work out or, in statistical terms, a type 1 error on the significant relationship between blogging entries and intervention. Anyway, onwards.

'Intervention' can, like many things in life, have several different meanings depending on the context in which it is used and the person who uses it. It can mean acting to mediate in a dispute for example; or interfering in specific affairs. From a healthcare point of view, intervention is generally read to mean 'administering something to improve a condition, disease, illness or injury'. Intervention is generally seen as a positive thing which on the whole is welcomed.

I was drawn to writing this entry following my previous posts on the use of evidence-based practice in autism and the involvement of NICE in formulating guidelines for autism. I do also try to keep up with all the latest research on intervention (and other things) in autism as part of my job, so it is also of some interest to me professionally. I must stress that when I use the word 'intervention' in this post, I am covering the whole spectrum of interventions (education, behaviour and biomedical) used with the aim of either ameliorating specific symptoms or improving quality of life.

There are several different opinions about the use of interventions for autism around. Many opinions are strongly held, and strongly argued on the web and via other media including the research literature. My quite unscientific survey suggests opinions circle around those who: (a) are vehemently opposed to any intervention for 'autism spectrum conditions' (I have stressed 'autism spectrum conditions' because by using this term I refer to the entire autism spectrum and all its manifestations); (b) are the polar opposite and actively seek as much intervention as possible for autism; (c) are somewhere in-between.

When looking at the number of people falling into these categories, I assume it is something like a normal distribution curve - most people fall into category (c) and fewer people populate the peripheries. I might add that people's opinions of intervention are potentially also not fixed; so at different points in time, they may move in and out of the various categories of opinion. Why is there such diversity in opinion on the use of intervention for autism?

Whilst I can't offer a definitive answer to this, I would guess that there is more than one factor at work.

(i) Diagnosis and heterogeneity is one suggestion. When we say autism or autism spectrum condition, we are not talking about one condition, state, etc but many presentations and manifestations. Within this spectrum we have people who can talk, communicate, live independent lives; indeed many who are extremely articulate (more so than some of the so-called neurotypicals). We also, within this spectrum, have people who have never, and probably will never speak, who will require constant support for the basic essentials of living and will, in all probability, never live truly independent lives. The often profound 'disability' present puts such a group of people at significantly greater risk of illness or early mortality (whether on the basis of autism or additional co-morbidity). I have not even touched upon issues such as 'wandering' and autism which is being discussed more and more these days. Different presentation and level of severity of presentation is key. Remember my post on autism and n=1?

(ii) 'Perception' of autism is another potential factor. Ask a 'professional' what autism is, and most probably (unless they are a parent of a person with autism or a person with autism themselves) they will list the symptoms in clinical fashion - 'autism is this, this and this'. Normally such a description would concentrate first on 'deficits' - the triad (dyad?) of impairments maybe. I hold my hand up here because that is exactly what I tend to do - just look at one of my presentations. Ask a person with autism - high-functioning autism or Asperger syndrome - or even some parents of people with autism, and the answer might be slightly different. They may talk about the difficulties of autism of course, but perhaps in some cases, it might be a little more positive - 'he is very good with computers' or 'I am very reliable and conscientious' for example. Perceptions of autism as a condition, illness, etc are balanced against perceptions of 'difference' (see for example this paper analysing neurodiversity and autism).

(iii) As previously blogged about, the fact that the evidence base for intervention generically in autism is still quite shaky is another potentially interfering factor. Show me an intervention suggested for autism and given enough time, I am sure that I can find some fault with it and the evidence put forward to support it or some contrary indication. Take my own area of interest - the use of a gluten- and casein-free diet. I could say that the studies on such an intervention are so far not conclusive on whether diet works or not (indeed whether it is gluten and/or casein or something else like carbohydrates), the studies are poorly controlled, they don't say whether diet affects autism or some other co-morbidity, etc, etc (steady on!). With this level of 'uncertainty', interventions for autism can easily be questioned and often are.

(iv) 'Who suggests intervention' is another bone of contention. Knowing all the controversies past and present in autism, it is likely that some people, perhaps with an affiliation to a certain idea or hypothesis, are more or less likely to be labelled as a 'credible' or 'less credible' a source when it comes to promoting a specific intervention. One of my first posts (all the way back last month) was titled: Should I mention gastrointestinal symptoms in autism? Catch my drift?

There are other factors in this equation but I have neither the time nor inclination to list them all here. Suffice to say that there are lots of different issues determining the various views on intervention and autism. Where does this lead us then? Well I don't think that there is ever going to be a true consensus on the use of 'intervention' for autism spectrum conditions. There is just too much variability and opinion on the matter. Indeed, with the potential onset of DSM-V and the proposal to remove Asperger syndrome as a distinct category in place of 'autism spectrum disorder', I foresee that discussion on 'intervention' will intensify as the years go on.

I do however think that in this era of 'choice' all options should be kept open. For a young child with autism, I believe that parents know what's best for their child. Assuming that they are able to make an informed decision about intervention A or intervention B (or any combination), etc and using the guidance available to them on efficacy and safety, they should be allowed to make a choice on intervention (or not). Professionals, I might add, can do much to aid this process ('aid' being the important word).

For a young / older adult with autism, things change slightly. In the UK we have something called Gillick competency which basically is a legal test of whether or not someone can make decisions about their health and any treatment. When someone approaches (exceeds) such a test and/or chronological age allows, decisions on things like intervention alter, and decisions shift to the person themselves. See the Charter of Rights for Persons with Autism by Autisme Europe for more information

Finally, intervention is about making a positive impact on a person and their life. When it does work, great... encourage it and study it - find out why it works, what areas it worked on, the cost-benefit ratio and who else it potentially might also work for. Where it doesn't work.. don't be afraid to stop intervention, don't be afraid to say 'it didn't work' and don't be afraid to look at other alternatives if so inclined.