Is the world a better place for people with autism now compared to say, 20 or 30 years ago?
Think back 30 years to 1981. 'Raiders of the Lost Ark' - "bad dates", 'For Your Eyes Only', and Shakin' Stevens (the Welsh Elvis!). It was 2 years after Lorna Wing and Judy Gould published their paper on the epidemiology of autism and the same year that Lorna Wing popularised Asperger syndrome (it would take over 10 years to make it into the diagnostic manuals).
I ask the question following a few interesting stories that have appeared in various media.
The BBC carried a report recently on the subject of an 'Autism-friendly city'. I have seen similar reports using the words 'autism-friendly'; where for example the top 10 autism-friendly US cities have been recently posted by Autism Speaks and places like cinemas offer autism-friendly screenings.
I think most people would like the idea of something being 'autism-friendly'.
In these times of equality and diversity, there have been huge advances, socially, culturally and legally in making our world a more inclusive place for everyone.
In the UK with the onset of the Disability Discrimination Act in 1995 (replaced by the Equality Act in 2010) we saw things like statutory rights in terms of access to buildings for people with physical disabilities and making various reading material available in larger print. Such measures have been fundamental in shaping our infrastructure, policies and opinions on ability and disability. The only real surprise is that it took so long for such legislation to become enacted - people in wheelchairs or who are visually-impaired did not just suddenly 'spring up' in the 1990s.
The introduction of the UK Autism Act in 2009 represents a similar step forward for autism; the National Autistic Society and partners are to be commended for their efforts in getting this bill enacted. The Act is probably the only piece of law specific to a 'condition' in the UK and sets important goals for Government in terms of recognising the needs of adults with autism. The Act focused on adults with autism simply because there was a gap after children's services ended - some might describe the gap as more like a void.
Alongside the increasing awareness of autism, the die seems to have been cast. Assuming also that the NICE guidelines due for autism (adults and children) are well described and implemented in the not-too-distant future, I hope I don't speak out of turn when I say that one really gets the feeling that changes are slowly being made to benefit people with autism and their families. The IACC on the other side of the Pond is another very positive step forward.
Everything is not universally 'rosy' with the world for all people with autism. There are still some harrowing stories of real hardship in relation to employment, financial independence and basic equality. Periodically more extreme events are reported potentially as a result of stress. One must also be mindful that there are quite a few people with autism who are perfectly happy to exist with themselves as they are and are not necessarily seeking such great social inclusion (as exemplified by direct person-to-person contact) - see this link on autism and 'Second Life' for an example. In these times of austerity, there may yet also be a sting in the tail for many people following proposed changes which are being vehemently opposed.
Perhaps in another 30 years I can come back and ask the same question: is the world a better place for people with autism?
Wednesday, 13 April 2011
Monday, 11 April 2011
The King's speech - celebrities and science
Yet another 'other musings' post but I think you will like this one.
Most people will know the actor Colin Firth either from his recent film success portraying King George VI (QE II's father) in The King's Speech or failing that from his other roles including 'that pond scene' a few years back as Mr Darcy in the BBC adaptation of Pride & Prejudice.
But did you know that he recently co-authored a research paper published last week on Brain structure and political orientation?
I have to say that when I first heard this I thought it was a delayed April Fool's joke. But no, really, he is a co-author on this paper and apparently has some interest in this area of research. Some of the background and links has been blogged about here.
Kudos to Colin for becoming involved in science. Who knows.. a new potential film topic to add to his repertoire.
Most people will know the actor Colin Firth either from his recent film success portraying King George VI (QE II's father) in The King's Speech or failing that from his other roles including 'that pond scene' a few years back as Mr Darcy in the BBC adaptation of Pride & Prejudice.
But did you know that he recently co-authored a research paper published last week on Brain structure and political orientation?
I have to say that when I first heard this I thought it was a delayed April Fool's joke. But no, really, he is a co-author on this paper and apparently has some interest in this area of research. Some of the background and links has been blogged about here.
Kudos to Colin for becoming involved in science. Who knows.. a new potential film topic to add to his repertoire.
Sunday, 10 April 2011
Is autism the same all over the world?
Modern human beings, homo sapiens sapiens. A term which unites us all because it reflects us all.
Move however further across the biological and ethnic sub-categorisations of homo sapiens sapiens and we slowly begin to differentiate ourselves from each other on the basis of gender and race. Further across, and including some societal, cultural and individual 'personality' differences mixed in with experience and environment, and we go from all being one and the same to all being uniquely different.
You could probably apply the same logic to anything. Start with a generic term, say 'autism spectrum condition' as described in the proposed DSM-V manual; move across the various categorisations, say sub-diagnosis, then move further across societal and individual differences et al and hey presto, unique and one-of-a-kind.
The reason for such a grandiose beginning to this entry is to show how similarity and differences can often be influenced by the level of description and semantics used.
Autism is defined by DSM and ICD diagnostic listings. This means that wherever in the world a child or adult is diagnosed, theoretically they should be similar in terms of the presentation of core symptoms fulfilling the diagnostic criteria. But does this guarantee that presentation and pathology of autism is the same the world over?
I was brought to this question by an article appearing recently suggestive that Israeli children with autism do not appear to show the same trend of macrocephaly as has been described in other studies from other parts of the world. The authors of the Israeli study attribute this difference to 'a different genetic background'. I know macrocephaly is not a core trait of autism but it got me thinking. What other research has been done on the similarities/differences between autism populations around the world, and in particular on the presentation of symptoms?
Well cryptically quite a bit and not very much at all. I will explain.
Ethnicity, and the other societal factors associated with ethnicity, has been quite extensively studied in autism. We know that although not uniform, certain ethnic groups not indigenous to a specific country tended to be under-represented in cases of autism. Take for example this study from the Netherlands which suggested if you were White European (by both parents), you were more likely to diagnosed with autism than if one or both of your parents were non-European. This tends to follow similar trends from research outside of autism.
An ethnic reason, genetic reason, environmental reason or a cultural reason?
There is also a suggestion that 'risk' of autism may be greater where mums are, for example, born in parts of Asia when compared to indigenous Australian parents with European heritage according to this study; following on from more recent suggestions of increased risk of autism in Somali populations.
Fine, but what about those who already have been diagnosed?
Well this is where the research dries up a little. There is a little about presentation of autism in various countries outside of the main research-bearing nations; so we have papers from Saudi Arabia for example describing autism in Saudis. There are no doubt other examples from other countries.
Very little has however been produced in the way of comparing country against country or ethnicity against ethnicity on symptom presentation. Those few studies that have been performed on this issue suggests some minor differences (language?) but nothing concrete, and tend to be plagued by methodological issues such as low participant numbers for example.
Would it be so difficult to look at 500 people with various autism diagnoses from each of the 5 (inhabited) continents (n=2500) and compare and contrast, using the array of questionnaires, schedules and observation tools on offer in autism research, their core and peripheral symptoms? Too much...?
If they were all (roughly) the same, fine - we have confidence that autism is (roughly) globally the same. If they were different though, what would that suggest?
Move however further across the biological and ethnic sub-categorisations of homo sapiens sapiens and we slowly begin to differentiate ourselves from each other on the basis of gender and race. Further across, and including some societal, cultural and individual 'personality' differences mixed in with experience and environment, and we go from all being one and the same to all being uniquely different.
You could probably apply the same logic to anything. Start with a generic term, say 'autism spectrum condition' as described in the proposed DSM-V manual; move across the various categorisations, say sub-diagnosis, then move further across societal and individual differences et al and hey presto, unique and one-of-a-kind.
The reason for such a grandiose beginning to this entry is to show how similarity and differences can often be influenced by the level of description and semantics used.
Autism is defined by DSM and ICD diagnostic listings. This means that wherever in the world a child or adult is diagnosed, theoretically they should be similar in terms of the presentation of core symptoms fulfilling the diagnostic criteria. But does this guarantee that presentation and pathology of autism is the same the world over?
I was brought to this question by an article appearing recently suggestive that Israeli children with autism do not appear to show the same trend of macrocephaly as has been described in other studies from other parts of the world. The authors of the Israeli study attribute this difference to 'a different genetic background'. I know macrocephaly is not a core trait of autism but it got me thinking. What other research has been done on the similarities/differences between autism populations around the world, and in particular on the presentation of symptoms?
Well cryptically quite a bit and not very much at all. I will explain.
Ethnicity, and the other societal factors associated with ethnicity, has been quite extensively studied in autism. We know that although not uniform, certain ethnic groups not indigenous to a specific country tended to be under-represented in cases of autism. Take for example this study from the Netherlands which suggested if you were White European (by both parents), you were more likely to diagnosed with autism than if one or both of your parents were non-European. This tends to follow similar trends from research outside of autism.
An ethnic reason, genetic reason, environmental reason or a cultural reason?
There is also a suggestion that 'risk' of autism may be greater where mums are, for example, born in parts of Asia when compared to indigenous Australian parents with European heritage according to this study; following on from more recent suggestions of increased risk of autism in Somali populations.
Fine, but what about those who already have been diagnosed?
Well this is where the research dries up a little. There is a little about presentation of autism in various countries outside of the main research-bearing nations; so we have papers from Saudi Arabia for example describing autism in Saudis. There are no doubt other examples from other countries.
Very little has however been produced in the way of comparing country against country or ethnicity against ethnicity on symptom presentation. Those few studies that have been performed on this issue suggests some minor differences (language?) but nothing concrete, and tend to be plagued by methodological issues such as low participant numbers for example.
Would it be so difficult to look at 500 people with various autism diagnoses from each of the 5 (inhabited) continents (n=2500) and compare and contrast, using the array of questionnaires, schedules and observation tools on offer in autism research, their core and peripheral symptoms? Too much...?
If they were all (roughly) the same, fine - we have confidence that autism is (roughly) globally the same. If they were different though, what would that suggest?
Saturday, 9 April 2011
Self-injurious behaviour and autism
Self-injury, auto-aggression, self-mutilation call it what you will, can be a relatively frequent occurrence in children with autism spectrum conditions, as in other developmental and intellectual conditions. The Research Autism entry on self-injurious behaviour (SIB) [behavior to our US cousins] suggests that such behaviour can take many forms; ranging from head-banging to hair pulling to eye gouging.
Having only witnessed such behaviour once or twice during my research contact with children with autism, I can testify how unnerving such behaviour can be and how the sight of a child in particular, hurting themselves really can be quite distressing. I cannot begin to imagine how a mother or father (or sibling) feels when they see this type of behaviour from their child/brother/sister over and over again. Might it be a significant contributor to stress?
In this post, I want to look at some of the research and dialogue on SIB and autism; in particular, looking at the antecedents, outcome and 'management/coping' strategies. I am focusing on 'self-aggression' rather than aggression directed towards others in this post. I stress as always that I am not offering any advice on SIB management, merely describing what the literature seems to be telling us.
I think most parents will have seen some degree of SIB in their child at some point in their development, irrespective of the presence of autism. Frustration and irritability are generally seen as the main precursors - why can't I have that toy, food, DVD [insert other item/thing/concept here] coupled with an immaturity in expressing such emotions through social or communicative mediums.
What this tells us is that certain degrees, or episodes of SIB are a part of growing up. Potentially also it gives us a developmental clue as to why such behaviours might be seen in autism, given that autism is not a failure to develop but rather a slightly different course of development. It also suggests that there may be many different routes to SIB and that it is the frequency and extensiveness of SIB presentation that perhaps distinguishes such pathology in autism or other conditions.
So what causes SIB in autism? Well, how long have you got. The Autism Research Institute (ARI) offer quite a comprehensive list of potential reasons for, and antecedents to, SIB and autism (available here). Outside of possible genetic explanations, there are several interesting issues raised, a few of which I will touch upon here.
Severity of autism is a prominent risk factor for SIB. More severe cases of autism are more likely linked to things like greater dependency on caregivers and less frequent acquisition of functional daily living skills - in short, less day-to-day independence. Knowing what happens to children when, for example, they enter their 'terrible twos' it is perhaps understandable that for a child with severe autism, such a lack of 'independence' could be a significant issue.
Communication issues also tie into increasing severity. Where for example, a child has only limited verbal or non-verbal skills the question needs to be asked, how does that child communicate wishes, preferences and intentions?
Communication, whether verbal or non-verbal, is therefore perhaps an important issue for SIB. Place yourself in a child's shoes: suppose you came back to your room and were looking for your favourite toy or book and realised it was not where you last put it. How would you communicate your query / desire / displeasure if verbal language was absent? It will be interesting to see what becomes experimentally of the recent discussions on the use of assistive technology such as the various Apple equipment for communication in autism and further towards SIB.
The sensory issues associated with autism are also a potential point of interest to SIB. I have blogged previously about hearing and autism and the issue of hyperacuity. Where people with autism have been able to describe such experiences, on some occasions it sounds very much to me as though such hyperacuity might fall somewhere between irritation and downright pain. Again same scenario as above - how do you communicate those feelings without language or with limited language?
Since we are talking about pain, it is perhaps also worth mentioning here about a possible relationship between physical discomfort and SIB. Communication again - how does a non-verbal person communicate physical discomfort or pain? Toothache for example. You might try and pull the tooth out yourself. Those wisdom teeth pushing through - how do you tell someone they hurt? Headache (whether tension-type, migraine or other) is another example and perhaps more complicated given that there is no objective way of determining a headache - at least outside of a hospital or laboratory. Bang your head perhaps to try and make it go away or indicate that pain in your head?
Other physical discomforts have been discussed in the literature also. Functional bowel problems such as constipation have been linked to incidence of SIB (and reduced when treated accordingly). The point is that the many complicated issues potentially attached to autism make it a likely candidate for the presentation of SIB.
So what to do about SIB?
Here I think we need to be very careful. The natural reaction might be just to try and treat the SIB as a 'challenging behaviour'. But wait a minute. What if SIB is not just another challenging behaviour - what if it is a means of communication?
This is where the detective work starts. Looking at things like the onset of SIB, the frequency and the duration. If SIB starts when a child changes school for example or when they reach that funny little point in life called puberty, is it a case of reaching for the anti-challenging behaviour meds straight away?
I am not saying that all SIB should be just passed over as a communication issue or a sensory issue when it comes to possible treatment options because, whilst being impractical for the child and their parents, this may also put the child at some significant risk of hurting themselves permanently. The suggestions are to look closely first and see what is around - devise a checklist of possibilities (teeth, head, tummy, cold, fever, etc) and, as far as possible, rule out the simplest explanations first before moving on to the more complex issue of environment (lights, sounds, that singer on the TV with the screechy voice, etc) and finally ending on other potential causation.
I did intend to talk about the possible biological implications of SIB related to things like reduced pain sensitivity and that wonderful opioid-excess hypothesis and the use of naltrexone. I have decided not to on this occasions because of the risk of 'medicalising' SIB too quickly.
Having only witnessed such behaviour once or twice during my research contact with children with autism, I can testify how unnerving such behaviour can be and how the sight of a child in particular, hurting themselves really can be quite distressing. I cannot begin to imagine how a mother or father (or sibling) feels when they see this type of behaviour from their child/brother/sister over and over again. Might it be a significant contributor to stress?
In this post, I want to look at some of the research and dialogue on SIB and autism; in particular, looking at the antecedents, outcome and 'management/coping' strategies. I am focusing on 'self-aggression' rather than aggression directed towards others in this post. I stress as always that I am not offering any advice on SIB management, merely describing what the literature seems to be telling us.
I think most parents will have seen some degree of SIB in their child at some point in their development, irrespective of the presence of autism. Frustration and irritability are generally seen as the main precursors - why can't I have that toy, food, DVD [insert other item/thing/concept here] coupled with an immaturity in expressing such emotions through social or communicative mediums.
What this tells us is that certain degrees, or episodes of SIB are a part of growing up. Potentially also it gives us a developmental clue as to why such behaviours might be seen in autism, given that autism is not a failure to develop but rather a slightly different course of development. It also suggests that there may be many different routes to SIB and that it is the frequency and extensiveness of SIB presentation that perhaps distinguishes such pathology in autism or other conditions.
So what causes SIB in autism? Well, how long have you got. The Autism Research Institute (ARI) offer quite a comprehensive list of potential reasons for, and antecedents to, SIB and autism (available here). Outside of possible genetic explanations, there are several interesting issues raised, a few of which I will touch upon here.
Severity of autism is a prominent risk factor for SIB. More severe cases of autism are more likely linked to things like greater dependency on caregivers and less frequent acquisition of functional daily living skills - in short, less day-to-day independence. Knowing what happens to children when, for example, they enter their 'terrible twos' it is perhaps understandable that for a child with severe autism, such a lack of 'independence' could be a significant issue.
Communication issues also tie into increasing severity. Where for example, a child has only limited verbal or non-verbal skills the question needs to be asked, how does that child communicate wishes, preferences and intentions?
Communication, whether verbal or non-verbal, is therefore perhaps an important issue for SIB. Place yourself in a child's shoes: suppose you came back to your room and were looking for your favourite toy or book and realised it was not where you last put it. How would you communicate your query / desire / displeasure if verbal language was absent? It will be interesting to see what becomes experimentally of the recent discussions on the use of assistive technology such as the various Apple equipment for communication in autism and further towards SIB.
The sensory issues associated with autism are also a potential point of interest to SIB. I have blogged previously about hearing and autism and the issue of hyperacuity. Where people with autism have been able to describe such experiences, on some occasions it sounds very much to me as though such hyperacuity might fall somewhere between irritation and downright pain. Again same scenario as above - how do you communicate those feelings without language or with limited language?
Since we are talking about pain, it is perhaps also worth mentioning here about a possible relationship between physical discomfort and SIB. Communication again - how does a non-verbal person communicate physical discomfort or pain? Toothache for example. You might try and pull the tooth out yourself. Those wisdom teeth pushing through - how do you tell someone they hurt? Headache (whether tension-type, migraine or other) is another example and perhaps more complicated given that there is no objective way of determining a headache - at least outside of a hospital or laboratory. Bang your head perhaps to try and make it go away or indicate that pain in your head?
Other physical discomforts have been discussed in the literature also. Functional bowel problems such as constipation have been linked to incidence of SIB (and reduced when treated accordingly). The point is that the many complicated issues potentially attached to autism make it a likely candidate for the presentation of SIB.
So what to do about SIB?
Here I think we need to be very careful. The natural reaction might be just to try and treat the SIB as a 'challenging behaviour'. But wait a minute. What if SIB is not just another challenging behaviour - what if it is a means of communication?
This is where the detective work starts. Looking at things like the onset of SIB, the frequency and the duration. If SIB starts when a child changes school for example or when they reach that funny little point in life called puberty, is it a case of reaching for the anti-challenging behaviour meds straight away?
I am not saying that all SIB should be just passed over as a communication issue or a sensory issue when it comes to possible treatment options because, whilst being impractical for the child and their parents, this may also put the child at some significant risk of hurting themselves permanently. The suggestions are to look closely first and see what is around - devise a checklist of possibilities (teeth, head, tummy, cold, fever, etc) and, as far as possible, rule out the simplest explanations first before moving on to the more complex issue of environment (lights, sounds, that singer on the TV with the screechy voice, etc) and finally ending on other potential causation.
I did intend to talk about the possible biological implications of SIB related to things like reduced pain sensitivity and that wonderful opioid-excess hypothesis and the use of naltrexone. I have decided not to on this occasions because of the risk of 'medicalising' SIB too quickly.
Friday, 8 April 2011
IACC and summary of advances in autism
Another quick post since we are on the theme of research and intervention to end the working week. The Autism Speaks blog carried a link yesterday to the IACC summary of advances for 2010. The IACC (Interagency Autism Coordinating Committee to us Brits) seem to be really starting to bring things together with regards to autism research and practice under the US Federal Government banner.
It got me wondering: what is the UK or European equivalent? Do we have an equivalent? If not, why?
It got me wondering: what is the UK or European equivalent? Do we have an equivalent? If not, why?
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.
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.
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