DSM V and the removal of Asperger Syndrome – a parent’s view

The Diagnostic and Statistical Manual of Mental Disorders (DSM) is a classification of mental disorders used by mental health professionals to identify and diagnose conditions including autism spectrum disorders.  Together with the International Classification of Diseases (ICD) published by the World Health Organisation they produce a set of authoritative guidelines.  In the UK however, it is the ICD that is more commonly used though the ICD will consider the changes made in DSMV.

The current edition, DSM-IV, was published in 1994 by the American Psychiatric Association (APA) but is due to be replaced by DSM V. An expert panel appointed by the American Psychiatric Association is currently working on the fifth edition of the DSM due to be published in May 2013.  As part of this review they are looking to review the definition of autism.  It is proposed that there be one category of autism spectrum disorder, thereby removing Asperger Syndrome and PDD-NOS from the DSM.

This is the proposed definition of Autism Spectrum Disorder which can also be found by clicking here.  An individual has to meet the criteria A, B, C, and D in order to be diagnosed with an ASD.

A.    Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:

1.     Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,

2.     Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.

3.     Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and  in making friends  to an apparent absence of interest in people

B.    Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of  the following:

1.     Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).

2.     Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).

3.     Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

4.     Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).

C.    Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

D.    Symptoms together limit and impair everyday functioning.

As well as this there is also a severity grade which ranges from level 1 requiring support, level 2 requiring substantial support and level 3 requiring very substantial support.  You can click here to read these levels in more detail.

So what are the implications of the removal of Asperger syndrome?

I cannot say what the consequence of these changes will be for those with aspergers and those who would have been diagnosed with aspergers in the future.  I am not an expert in this area and what I write here is merely my observations and concerns as a mother.  Nevertheless, having a son with a diagnosis of autism spectrum disorder and a daughter with aspergers, has provided me with an insight into dealing with two different labels.

My son’s ASD diagnosis has attracted a greater amount of understanding whereas my daughter’s aspergers label has been more readily dismissed.  I have met many people who do not fully understand what asperger syndrome is and who do not believe it to be a form of autism.  As a result I have noticed a tendency for teachers in particular to dismiss aspergers as not warranting support and yet my daughter shares many of the difficulties as her brother who has a diagnosis of ASD.

I have also found that there is insufficient understanding of how aspergers affects girls.  When my daughter was diagnosed a year ago, the clinicians that diagnosed her were very dismissive, commenting that my daughter was only ‘mild’ and didn’t need support at school.   I don’t dispute that my daughter’s symptoms are milder than someone with more classical forms of autism but the clinicians failed to recognise how aspergers was affecting my daughter.  They didn’t see that beyond my daughter’s natural ability to express herself was a girl whose social, sensory and processing difficulties was making life so hard for her that she is now starting to refuse to go to school and is becomiing increasingly withdrawn.

As a result of my experiences, I can see that a diagnosis of ASD may be preferable to an aspergers diagnosis particularly if it enables better understanding of children like my daughter.  Of course that depends on whether she will be automatically moved across to ASD or whether I have to have her rediagnosed.  At the moment, I am unsure about whether I would opt for a rediagnosis (should such an option become available) because I’m reluctant to put her through the stress of a possible reassessment.  The first time was difficult enough when my daughter responded very badly due to the fear of going to an unknown clinic for an assessment.  In addition there is also the worry as to whether she would meet the deficits for having an ASD though I have read that those with a current diagnosis should meet the new criteria for autism spectrum disorder. Having looked at the proposals, I feel that my daughter appears to meet the criteria though I am unsure whether her symptoms will meet the requirements under the minimum severity level 1 for support.

From this perspective,  I can understand people’s concerns that some people may not get a diagnosis of ASD or may be diagnosed with something else that doesn’t attract any support.  This is a legitimate worry in times when there are budgetary constraints and limited resources and it is a concern I share in the UK.  With Governmental intentions to restrict disability living allowance and changes to the special educational needs system, I am very fearful that some children could miss out on vital support in the future.

The changes to the DSM also raises wider questions about the social impact of removing asperger syndrome.  Is it right to remove aspergers when it has become an identity that is claimed by many people and when a community has sprung up as a result?  How do adults with aspergers feel about these changes or those adults considering seeking a diagnosis of Asperger syndrome?  And what about the impacts on those with classical forms of autism and learning disability?  What do they and their families feel about these changes?  Is it right that such a wide spectrum of autism spectrum disorders be assimilated under one label?

I realise I have posed many questions but it is time that we considered the implications of these changes on our children and for our autistic population generally and also what it means for the provision of support and services in the future.

For further information:

The National Autistic Society -  Proposed changes to autism and Asperger syndrome diagnostic criteria

Research Autism – press release re DSM and ICD-10

An article by Prof Baron-Cohen from Cambridge University – The short life of a diagnosis – http://www.nytimes.com/2009/11/10/opinion/10baron-cohen.html

American Psychiatric Association DSM-5 – http://www.dsm5.org/Pages/Default.aspx

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6 Responses to DSM V and the removal of Asperger Syndrome – a parent’s view

  1. Gill says:

    Fascinating and informative blog! Looking at the criteria my ‘Aspergers’ son should be classed as autistic as he has all the symptoms…very thought provoking – thank you.

    :) . Gill

  2. Jayme says:

    Why would they want to remove those conditions in the first place? I don’t understand. That would leave a huge amount of children to grow without proper services. The domino effect would be devastating. I guess I have to do some research.

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  4. Steph says:

    Thanks for this, brilliantly written as usual and very interesting. In some ways, giving everyone the ‘banner’ diagnosis of ASD will help as it can only increase awareness and understanding if more people here about it. On the other hand, everyone diagnosed with this currently is an individual and has individual issues, so it wouldn’t be good if everyone was to be treated in the same way. I think my daughter has something slightly different from ‘classic’ autism, but I don’t really mind what she is ‘labelled’ with, as long as people take the time to understand her and work with her in an appropriate way.

  5. I would feel that this new diagnosis puts more space between those with an asd diagnosis and those without. It will make them all seem more ‘different’.

  6. Fiona says:

    Fascinating post Deb as always. You’ve raised questions for me too! xxx

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