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.

Thursday, 7 April 2011

Measuring evidence in autism

A few weeks back I had the pleasure of an email conversation with Dr Gary Mesibov on the topic of one of his recent papers titled: 'Evidence-based practices and autism'. Some with an interest in autism will know Dr Mesibov is the current Director of Division TEACCH at the University of North Carolina at Chapel Hill.
Although brief, my main reason for contacting Dr Mesibov was related to his views on the use of evidence-based practices guiding good autism practice. Readers may know that this is a topic particularly relevant to the UK following the announcement that NICE are formulating guidelines on best autism practice for children/young people and adults.

Dr Mesibov's recent paper on evidence-based practice (EBD) is an intriguing look at the history, formulation and current guidance on EBD in Psychology and Education fields and how it may/may not relate to autism spectrum conditions. Some of the EBD guidance included in Dr Mesibov's paper, from the very mysteriously titled 'Division 12' group (an off-shoot of the American Psychological Association), can be found here (see Tables 1 and 2).

Without wishing to plagiarise Dr Mesibov's work, the main elements of his writings, as I interpret them (which may be a bias in itself), are: (a) much of the guidance on EBD whilst interesting, has not been applied specifically to autism; (b) that which has been applied, suggests that very few, if any, interventions for autism make the grade - see the recent post on evidence lacking for autism interventions; (c) one of the main reasons why autism research does so badly is because of the difficulties in ascertaining long-term positive outcome following intervention; (d) the large heterogeneity in autism does little to improve the situation; (e) the use of the randomised-controlled trial (RCT) methodology, whilst useful for looking at the manipulation of one variable, loses some of its 'applicability' when applied to more comprehensive intervention programmes that contain multiple components, as many of the educational and behavioural interventions for autism might.

I might add that his overall conclusions are not 'anti-EBD'; indeed quite the contrary. He does however suggest a slightly modified EBD regime which covers many of the points raised above.

To many people, I am sure that some of the points Dr Mesibov raises would be considered heresy. The RCT is after all at the top of the evidence tree (if I was to be a nit-picker though, I might argue that it is topped by the meta-analysis or even the meta-analysis of a meta-analysis). But think about it: suppose you want to examine an educational intervention which might have 6 or 7 important parts to it which may need to be delivered slightly differently according to the person they are being targeted at. How do you formulate a good RCT around that? I might also add that others in autism research have also questioned the usefulness of the RCT (this time applied to ABA).

Don't get me wrong. I am a big fan of the RCT; particularly when you have one intervention/drug/analyte and are comparing them between homogeneous groups. Want to look at the effects of an antibiotic on a particular strain of bacteria? The RCT is your man or woman.

The question is whether RCT applied to a heterogeneous, behaviourally-defined condition looking at multi-component educational or behavioural intervention is necessarily the best course of action? I think the US Agency for Healthcare Research and Quality has already made its mind up (see page 11) although nice to see that the art of medicine might also come into intervention decisions as per my previous post.

Wednesday, 6 April 2011

Don't give me evils..

Another quick post (honestly!). The title of the post will be recognised by most of the UK audience as taken from Little Britain and everyones favourite 'chav' Vicky Pollard.
Anyway, I stumbled across an article in today's Independent online titled: Why a lack of empathy is the root of all evil.
The article discusses a new book from Prof. Simon Baron-Cohen called 'Zero degrees of empathy: a new theory of human cruelty'. Most people connected to autism will have heard about Prof. Baron-Cohen's theories on empathy and autism. The article has attracted some interesting comments.
That's all.

Tuesday, 5 April 2011

Prevalence and incidence of autism in Taiwan

Only a quick post this one on what is a gorgeous sunny day outside.
An early first article has appeared on-line at the Journal of Child Neurology titled: Prevalence and incidence of autism spectrum disorders among National Health Insurance enrollees in Taiwan from 1996 to 2005.
It is another look at the numbers of autism spectrum conditions but this time from a country outside of the "Western, industrialised" team. The main findings are that prevalence of autism, as measured by health service use, increased between 1996 and 2005 from 1.79 per 10,000 to 28.72 per 10,000 in Taiwan. More importantly, incidence (often a point of contention in autism) increased from 0.91 to 4.41 per 10,000 per year from 1997 to 2005. The greatest increase in incidence was in the 0-5 year age group (males).
What does it all mean?
Well, first of all it suggests that the numbers of cases of diagnosed autism were rising, and seemingly rising pretty fast in Taiwan over quite a short period of time (less than 10 years). It also suggests that the risk of being diagnosed with an autism spectrum condition was also increasing; again over a comparatively short period of time.
The fact that increasing incidence was noted for the younger age group (0-5 years) is important because it means that risk of autism diagnosis was greatest for this younger age group. This might have some implication for suggestions about increasing numbers being partially due to diagnosis in later childhood or adulthood (I stress 'might').
The authors of the Taiwan study also mention higher incidence in urban areas which could also be of some interest (whether due to geographic service provision or a role for some environmental factors).
The down-side to the data: well it was based on a database of service use, which might suggest that it misses cases where such services are not used (or not reported to be used); hence representing an under-estimation of cases (I don't know enough about the Taiwanese healthcare system to comment further).
It also looks like they did not go out and confirm the accuracy of the diagnosis, rather reliant on assessments for autism being accurately completed (although other papers from Taiwan suggest diagnostic provisions should not be under-estimated). I talked about diagnosis and diagnostic stability previously.
As the years push on and we spend longer with our current ICD and DSM diagnostic manual versions - nearly 20 years with each manual, it should mean that we start to get a clearer picture on prevalence and incidence worldwide without interference from things like changing diagnostic criteria.
If, as appears to be the trend, prevalence and incidence of autism is increasing worldwide, serious questions need to be asked about the possible factors governing such a change in numbers and perhaps more importantly, the provisions in place / to be put in place to ensure adequate services for all those diagnosed, particularly in these times of austerity.

The strange case of ICD code F84.8

We all make mistakes. I do however consider myself to be quite a consientious person; checking and re-checking various things in my life (I am one of those people who has to make sure that the gas cooker is turned off every evening before bed, even though I have no history of ever leaving it on).

I did however make a recent mistake on a reply post I made over at autism.about.com run by Lisa Jo Rudy on the topic of 'Atypical autism or PDD-NOS'. The discussion thread was all about labels and diagnoses; to which I posted, what I thought was an interesting point; a reply which mentioned the ICD-10 criteria for autism spectrum conditions which contained a typo. I was corrected, I might add, by someone with sharper eyes than I.

Getting back to my post: I mentioned those peculiar codes of the ICD-10 autism criteria: F84.8 Other Pervasive Developmental Disorder and F84.9 Pervasive Developmental Disorder, unspecified. It has always been a little bit of a mystery to me as to why ICD-10 contains both these two codings. Maybe I should back up a little and show readers what codings are available in ICD-10 pertient to pervasive developmental disorders:

  • F84.0 = childhood autism. 
  • F84.1 = atypical autism (including some sub-categories for areas of atypicaility). 
  • F84.2 = Rett syndrome. 
  • F84.3 = other childhood disintegrative disorder. 
  • F84.4 = overactive disorder(?). 
  • F84.5 = Asperger syndrome.


Then our mystery F84.8 and F84.9.

F84.9 PDD unspecified has a description saying that it is a residual category for PDD where there is either inadequate information or contradictory findings regarding diagnosis. F84.8 has no description at all. No description but present - the strange case of F84.8.

If we assume that F84.1 (atypical autism) is equivalent to PDD-NOS (or Autism Spectrum Disorder in the UK) and F84.9 is a catch-all for autism or PDD-NOS where some issue/s are present which do not make diagnosis as clear-cut, we are still left questioning what fits into F84.8.

Looking at the research where F84.8 is mentioned I'm afraid I am none the wiser. This paper, published in BMC Pediatrics on the early detection of autism spectrum conditions in the UK makes reference to the coding. The authors imply that F84.1 is correctly used to determine atypical autism but then go on to say that semantic pragmatic language disorder is also covered under either F84.1 or F84.8 or F84.9. This paper also makes reference to the F84.8 and F84.9 codings but again I don't see the distinction.

I assume that, at the time of the ICD-10 planning, there was some logic as to how these codings would be used. Was F84.8 the 'overspill of the overspill' coding?

To quote from Sir Arthur's greatest invention: "when you have eliminated the impossible, whatever remains, however improbable must be the truth".

Monday, 4 April 2011

Evidence lacking for most autism treatments

There has been some media interest in a series of reviews published in the American Academy of Pediatrics journal 'Pediatrics' on the effects of various medication strategies and behavioural therapies being used with autism spectrum conditions. A link to the relevant abstracts can be found here, here and here. Some viewers may know that this is the same journal that published various guidelines on gastrointestinal issues related to autism a little while back that I touched upon in a previous blog entry.

I initially had mixed feelings about the conclusions drawn from these reviews and the subsequent press coverage. The underlying message seemed to be that for most 'treatment options' there was no convincing evidence that they "actually help kids get better" (their quote not mine) at least in the long-term; although accepting short-term gains for some. Mixed feelings because of how this represents the current state of management and intervention options for (children with) autism - i.e. how little we actually know despite literally millions of pounds, dollars, Euro etc of research money being spent on R&D.

I was however heartened by the call for further research into these areas and also the suggestion that 'best' and 'non-responders' to intervention should be a focus, going back to the notion of autism and n=1. Breaking down what was actually included as part of these reviews, the authors looked at various pharmacotherapies being used in autism as well as various behavioural therapies. Their conclusions were that whilst some interventions seemed to show often quite pronounced positive effects for individuals, very little is known about the factors governing response and the characteristics pertinent to a positive response in the longer term.

Medications used to tackle challenging and repetitive behaviours specific to autism did receive a general thumbs up. Important however was the highlighting of 'side-effects' of said medications; particularly dyskinesia and weight gain following use of drugs like risperidone and aripriprazole. Unfortunately also, the anti-depressant medications didn't fare well; following on from the recent meta-analysis of SSRI use for autism shown here detailing limited effectiveness.

The one area of review that did provide the most convincing findings was related to a lack of general efficacy for the gastrointestinal hormone secretin for autism and a strange call to research it no more - strange because for about 5-6 years it hasn't; or not at least under large-scale controlled-trial conditions. What more is there to say? Well not much really.

I'd like to think that if there are lessons to be learned from these reviews they are these: (1) autism is not autism but autisms - focusing on sub-groups, and more importantly looking at best- and non-responder characteristics to various interventions, is probably the best way forward; (2) 'short-term' gains are important - but longer study periods or follow-up studies are required to see how these gains translate into long-term outcome - how we measure 'outcome' is another matter; (3) co-morbidity is something that perhaps has been given too little attention in autism intervention research - is intervention affecting core symptoms or impacting on peripheral symptoms? Does it make any difference anyway?

All of this is perhaps more fodder for the upcoming NICE review of autism coming to a station near you soon (at least in the UK).