There is much discussion going on at the moment regarding the changes in definition of the autism diagnosis in the new DSM-V (Diagnosis and Statistical Manual of Mental Disorders), due to come out in 2013.
Research indicates that the distinction between mild - high functioning autism and Asperger is difficult to make, consequently Asperger might no longer be seen as a separate condition and would be included instead together with autism and pervasive development disorders.
Catherine Lord, director of the Autism and Communication Disorders Centers at the University of Michigan, one of 13 members of a group evaluating autism and other neurodevelopmental disorders for the manual said:
"Nobody has been able to show consistent differences between what clinicians diagnose as Asperger's syndrome and what they diagnose as mild autistic disorder".
"Asperger's means a lot of different things to different people”.
"It's confusing and not terribly useful."
These changes seem to generate some anger and uncertainties amongst Asperger people and also, amongst some parents of autistic individuals as well as autism professionals. The arguments we hear are somewhat inconsistent with what has been argued all along, but this only illustrates further how divided people are with regard to what autism actually is.
Some Asperger people who tend to like to advocate for autistic individuals (e.g. ASAN group), often speak for anyone who has a diagnosis of autism. Surprisingly however, the proposed changes concern them, because they argue that they would be stigmatised if they were labelled as other individuals who are less functional than themselves. In other words, they both present as being representative of the autism community and as being opposed to a grouping with other autistic individuals. A comment made by Tony Attwood, a psychologist based in Australia who wrote “The Complete Guide to Asperger’s Syndrome” (Jessica Kingsley Publishers, 2006) illustrates this well: “
"The general public has either a neutral or fairly positive view of the term Asperger’s syndrome,” but if people are told they should be evaluated for autism, “they will say: ‘No, no, no. I can talk. I have a friend. What a ridiculous suggestion!’
Similarly, many researchers have exclusively focused on Asperger and High Functioning Autism, essentially because assessing them is easier. The data however is almost always presented as facts of significance to autism as a whole. So why would they too be concerned of grouping everyone under a same diagnosis? See New York Time article by Simon Baron-Cohen on this issue.
The problem is rather that we still are far away from defining autism, Asperger and other related conditions in any effective way. There are currently no biological markers and the diagnosis is solely made according to three main, and I would say rather crude traits: communication, socialisation and behaviour. But these traits not only vary in their severity or mildness, they also vary in the way they develop, in the way they evolve and in the way they associate with other co-morbid factors, of a medical and/or behavioural nature. Furthermore, it has now been over two decades since we have known that autism could be related to totally distinct aetiologies. Clearly autism is not how we have defined it so far. Therefore we need to provide better answers. And this must arise from better and fuller evaluation of individuals, from getting to grips, once and for all with the huge phenotypic disparity we are witnessing.
Would the changes proposed by the new DSM-V assist in this sense? Perhaps on one hand, as we have seen recently, the discussions that have been generated demonstrate that all it is, is just merely a semantic exercise. And it seems to shock people to realise what they had called something one day could be called another thing another day. If this forces everyone to rethink autism for what it actually is, well, that is a good thing, for we should indeed look afresh at the actual specific characteristics of autism spectrum disorders. Also we need to define better what might be the values of a diagnosis, when it should be given and how? That could prevent the misuse we have seen in recent years by many self-proclaimed protagonists.
On the other hand, there is the risk that some people would no longer want to be assessed for a diagnosis and that consequently, could affect in the support they receive. Additionally, we risk achieving just the opposite of what the American Psychiatry Association is trying to achieve, with regard to better gradation of the severity, better recognition of medical comorbidities (including genetic disorders, epilepsy/EEG abnormalities and sleep, or GI problems) and potential biomarkers, as it is harder to distinguish people who have been defined by one single common condition.
Perhaps, it is time to stop defining the diagnosis of autism from the sole input of psychologists and psychiatrists but also with the support of medical doctors and scientists who are able to bring a whole new range of disciplines and insights into these conditions.
Update 01.03.10
APA announces a one year delay in publishing the DSM-V- interesting article here on the semantic of labels.
A few additional links:
The revisions, which will be considered for the DSM's fifth edition, due in 2013 can be found here:
http://www.dsm5.org
Viewers will be able to submit comments until April 20, 2010. After that time, this site will be available for viewing only.
Diagnostic and Statistical Manual of Mental Disorders.
CNN report: Revised psychiatry manual targets autism, substance disorders
By Elizabeth Landau, CNN, February 11, 2010
http://edition.cnn.com/2010/HEALTH/02/10/dsm.v.revisions.psychiatry/
Research indicates that the distinction between mild - high functioning autism and Asperger is difficult to make, consequently Asperger might no longer be seen as a separate condition and would be included instead together with autism and pervasive development disorders.
Catherine Lord, director of the Autism and Communication Disorders Centers at the University of Michigan, one of 13 members of a group evaluating autism and other neurodevelopmental disorders for the manual said:
"Nobody has been able to show consistent differences between what clinicians diagnose as Asperger's syndrome and what they diagnose as mild autistic disorder".
"Asperger's means a lot of different things to different people”.
"It's confusing and not terribly useful."
These changes seem to generate some anger and uncertainties amongst Asperger people and also, amongst some parents of autistic individuals as well as autism professionals. The arguments we hear are somewhat inconsistent with what has been argued all along, but this only illustrates further how divided people are with regard to what autism actually is.
Some Asperger people who tend to like to advocate for autistic individuals (e.g. ASAN group), often speak for anyone who has a diagnosis of autism. Surprisingly however, the proposed changes concern them, because they argue that they would be stigmatised if they were labelled as other individuals who are less functional than themselves. In other words, they both present as being representative of the autism community and as being opposed to a grouping with other autistic individuals. A comment made by Tony Attwood, a psychologist based in Australia who wrote “The Complete Guide to Asperger’s Syndrome” (Jessica Kingsley Publishers, 2006) illustrates this well: “
"The general public has either a neutral or fairly positive view of the term Asperger’s syndrome,” but if people are told they should be evaluated for autism, “they will say: ‘No, no, no. I can talk. I have a friend. What a ridiculous suggestion!’
Similarly, many researchers have exclusively focused on Asperger and High Functioning Autism, essentially because assessing them is easier. The data however is almost always presented as facts of significance to autism as a whole. So why would they too be concerned of grouping everyone under a same diagnosis? See New York Time article by Simon Baron-Cohen on this issue.
The problem is rather that we still are far away from defining autism, Asperger and other related conditions in any effective way. There are currently no biological markers and the diagnosis is solely made according to three main, and I would say rather crude traits: communication, socialisation and behaviour. But these traits not only vary in their severity or mildness, they also vary in the way they develop, in the way they evolve and in the way they associate with other co-morbid factors, of a medical and/or behavioural nature. Furthermore, it has now been over two decades since we have known that autism could be related to totally distinct aetiologies. Clearly autism is not how we have defined it so far. Therefore we need to provide better answers. And this must arise from better and fuller evaluation of individuals, from getting to grips, once and for all with the huge phenotypic disparity we are witnessing.
Would the changes proposed by the new DSM-V assist in this sense? Perhaps on one hand, as we have seen recently, the discussions that have been generated demonstrate that all it is, is just merely a semantic exercise. And it seems to shock people to realise what they had called something one day could be called another thing another day. If this forces everyone to rethink autism for what it actually is, well, that is a good thing, for we should indeed look afresh at the actual specific characteristics of autism spectrum disorders. Also we need to define better what might be the values of a diagnosis, when it should be given and how? That could prevent the misuse we have seen in recent years by many self-proclaimed protagonists.
On the other hand, there is the risk that some people would no longer want to be assessed for a diagnosis and that consequently, could affect in the support they receive. Additionally, we risk achieving just the opposite of what the American Psychiatry Association is trying to achieve, with regard to better gradation of the severity, better recognition of medical comorbidities (including genetic disorders, epilepsy/EEG abnormalities and sleep, or GI problems) and potential biomarkers, as it is harder to distinguish people who have been defined by one single common condition.
Perhaps, it is time to stop defining the diagnosis of autism from the sole input of psychologists and psychiatrists but also with the support of medical doctors and scientists who are able to bring a whole new range of disciplines and insights into these conditions.
Update 01.03.10
APA announces a one year delay in publishing the DSM-V- interesting article here on the semantic of labels.
A few additional links:
The revisions, which will be considered for the DSM's fifth edition, due in 2013 can be found here:
http://www.dsm5.org
Viewers will be able to submit comments until April 20, 2010. After that time, this site will be available for viewing only.
Diagnostic and Statistical Manual of Mental Disorders.
CNN report: Revised psychiatry manual targets autism, substance disorders
By Elizabeth Landau, CNN, February 11, 2010
http://edition.cnn.com/2010/HEALTH/02/10/dsm.v.revisions.psychiatry/
Posts
Most of the individuals with AS would rather liked to be called Aspies than Autistic. Now that the DSM is proposing to group asperger’s syndrome with autism, there have been lots of discussion about this matter among Aspies and parents of Aspies. The DSM says that there is no difference between high or mild functioning autism and asperger syndrome. And there the DSM is planning to put AS under the autism rug.
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