This is an article from 2010, written before publication of DSM-5. It details The National Autistic Society's response to the planned changes to autism diagnostic criteria. For information about DSM-5, which was published in May 2013, see our web page Changes to autism and Asperger syndrome diagnostic criteria.
The American Psychiatric Association (APA) is revising its diagnostic manual, known as Diagnostic and Statistical Manual (DSM). This is one of the two main international sets of diagnostic criteria for autism spectrum disorders, including Asperger syndrome.
The DSM is very influential, although the main set of criteria used in the UK is the World Health Organisation’s International Classification of Diseases (ICD).
This article summarises the key points of the changes, what The National Autistic Society (NAS) thinks about the changes, and what you can do.
What do the proposals say?
Diagnostic criteria are revised periodically by a team of experts, taking into account the most up-to-date research. For the next edition of the DSM, DSM-5, they propose some changes which could affect the way diagnoses will be given to people on the autism spectrum.
Here are some of the main changes:
- The current terms used in the DSM-4 are autistic disorder, Asperger’s disorder, childhood disintegrative disorder and PDD-NOS (pervasive developmental disorder not otherwise specified). The proposals mean that when people go for a diagnosis in the future, instead of receiving a diagnosis of one of these disorders, they would be given a diagnosis of 'autism spectrum disorder'.
- The triad of impairments will be reduced to two main areas:
1. social communication and interaction.
2. Restricted, repetitive patterns of behaviour, interests, or activities.
- Sensory behaviours will be included in the criteria for the first time, under restricted, repetitive patterns of behaviours descriptors.
- The emphasis during diagnosis will change from giving a name to the condition to identifying all the needs someone has and how these affect their life.
- They are also planning to introduce 'dimensional elements' which should give an indication of how much someone’s condition affects them. This should help to identify how much support an individual needs.
The new Manual, DSM-5, will be published in 2013. Read the DSM-5 proposals on autism spectrum disorders.
What does the NAS think of the proposals?
The new diagnostic criteria
The NAS welcomes the overall proposed approach to streamline diagnostic criteria and make them simpler, to develop dimensional measures of severity and recognise the range of full health problems someone is experiencing, as well as any other factors that impact on their diagnosis.
However, we do believe that the proposed severity levels are not fit for purpose and potentially very unhelpful as they are currently drafted, for the following reasons:
- There would need to be much more detail to make the severity levels appropriate and widely applicable.
- The levels are not consistent with the diagnostic criteria. Diagnostic criterion D states that “Symptoms together limit and impair everyday functioning” – in other words the impairment is the result of all the different symptoms of autism interacting. Therefore it is not appropriate to break down severity levels into the two separate domains.
- Key areas, including sensory aspects, are not mentioned within the severity levels.
- The minimum criteria for level 1 severity “Needs support” are considerably higher than the minimum criteria for a diagnosis. This is particularly worrying as, in the UK, many people with autism struggle to have their needs recognised by services and get the support they need, particularly where their needs are less obvious.
- The linking of a clinical diagnosis to recommendations of support may create expectations for people on the autism spectrum that services will be provided when this will not always be the case (at least in the UK), due to high eligibility thresholds or because decisions about such support may be taken by professionals who have no relation to the diagnostic process.
- Creating a direct link between a clinical decision over diagnosis and a recommendation for support could affect clinical impartiality. In the UK we are aware of situations where clinical professionals have felt under pressure from their employers to under-assess needs in order to ration limited resources.
We believe that the complexity of the presentation of autism spectrum disorders requires that the severity of impairment can only be assessed on an individual basis. It must not be linked to such a simplistic recommendation for support.
Asperger syndrome and other sub-groups
Our experts Dr Lorna Wing and Dr Judith Gould have submitted a paper to the American Psychiatric Association, jointly written with Professor Christopher Gillberg. This article has been published in the journal Research in Developmental Disabilities. It calls for a stronger focus on social imagination, diagnosis in infancy and adulthood, and on the possible under-diagnosis of girls and women with autism. They recommend that sub-group names for particular autism spectrum disorders are kept in the new diagnostic criteria, including a description of Asperger syndrome, to make it very clear that this continues to be a part of the autism spectrum.
Early in 2010 we asked for people’s views on the proposals on our website so that we could respond to the APA. We said it will be important not to consider when people on the autism spectrum present as being able to cope superficially but in reality have to exert considerable effort to manage in a neurotypical world. We also said that the changes could have an impact on people’s sense of identity, and it will be very important to bear in mind the views of people with an autism spectrum disorder while developing the proposals.
Social communication disorder
The APA propose creating a new diagnosis of social communication disorder. This would be given where someone exhibits the social communication and interaction aspects of an autism spectrum disorder diagnosis, but does not show restricted, repetitive patterns of behaviour, interests or activities.
From our experience of assessing people with social and communication disorders, we believe that communication problems are rarely the basis of difficulties with social interaction, but communication problems are often rooted in difficulties with social communication and interaction. Moreover, our assessments suggest that in fact these people usually do have restricted or repetitive behaviours and interests, but have been able to mask them, particularly where someone is more able intellectually.
Therefore we believe that this group is a sub-group of people on the autism spectrum. When the aim of DSM-5 is to avoid having autism sub-groups, we do not believe it is helpful to create an additional diagnosis of social communication disorder.
The APA has held a number of formal consultations, and the NAS has responded to the APA to make them aware of our views on these issues.
Frequently asked questions
Will this change my diagnosis?
If you have already got a diagnosis, these changes will not affect it.
Does this mean Asperger syndrome won’t exist anymore?
If you currently have a diagnosis of Asperger syndrome or Asperger disorder this will not change. In the future, people would get a diagnosis of 'autism spectrum disorder' rather than any of the current DSM diagnostic terms, which include autistic disorder, Asperger disorder, PDD-NOS, etc.
The people developing DSM-5 have suggested that the term 'Asperger’s' might still be used colloquially by diagnosticians; for example, for a diagnosis of autism spectrum disorder with similarities to Asperger syndrome.
Many people identify closely with the term Asperger syndrome, and will continue to use it in everyday language.
How will this affect diagnosis in the UK?
DSM is an American publication. Most diagnoses in the UK are based on the International Classification of Diseases (ICD), published by the World Health organisation, or other criteria, such as those developed by Professor Christopher Gillberg.
The current ICD (ICD-10) is virtually the same as DSM. The next version of the International Classification of Diseases (ICD-11) is due to be published in 2015. They will consider the changes made to DSM-5, but their descriptions are often slightly different. For example, the diagnostic names in ICD-10 are different to those in DSM-4.
At present we are not aware of any plans to change the label of Asperger syndrome during the next revision. View the very early proposals for ICD-11.
Will this mean that fewer people will be diagnosed with autism spectrum disorder?
Will this mean that people who have Asperger syndrome won’t be able to get a diagnosis in future?
An article published recently in the New York Times quotes a study which suggests that fewer people, particularly at the higher-functioning end of the spectrum, will be diagnosed as having autism spectrum disorder in the future. This study hasn’t been published yet so we don’t know how they came to this conclusion.
The DSM team believe that this is not the case. Diagnoses should always be based on a clinical decision about whether someone has an impairment which has a disabling effect on their daily life. Diagnoses will be given where symptoms cause an impairment to everyday functioning. We believe that most people with Asperger syndrome or high-functioning autism should continue to meet the proposed diagnostic criteria for autism spectrum disorder.
However, we believe that the proposed severity levels are very unhelpful and need to be rethought. In particular, the minimum severity level is much higher than the minimum criteria for diagnosis. We are contacting the APA to express our concerns on this issue.
If you are worried about this, the DSM-5 website says that there will be a further consultation period open to the public from spring 2012. You can contact the American Psychiatric Association abut your concerns. Details are at the bottom of this DSM-5 web page.
How will these criteria be used to make diagnoses?
The DSM criteria are medically-based and a diagnosis is given when “symptoms together limit and impair everyday functioning”. The criteria create the foundation for diagnostic tools such as the DISCO (Diagnostic Interview for Social and Communication Disorders), the ADI (Autism Diagnostic Interview), and the ADOS (Autism Diagnostic Observation Schedule). These and other schedules are used to collect information in order to diagnose whether someone is on the autism spectrum or not. Therefore the criteria form the basis for the diagnosis, but the clinician’s judgement is crucial.
When changes to the diagnostic criteria come into effect, the different diagnostic interviews and schedules will be revised. It will be important for those who make diagnoses to have training so that they understand the meaning of the various criteria for autism spectrum disorders and are able to identify all the ways that an autism spectrum disorder may affect someone (including the less obvious ways).
How do the changes help?
Overall, we believe that the changes to the diagnostic criteria are helpful. They are clearer and simpler than the previous DSM-4 criteria.
Including sensory behaviours in the criteria is also very useful, as many people with autism have sensory issues which affect them on a day-to-day basis. The emphasis on identifying the full range of difficulties that an individual has during the diagnosis process is also really valuable.
However, we are concerned about the proposed severity levels. As they are currently proposed we think they are very unhelpful, and they need to be rethought.
Will these changes affect what support and services I get?
Diagnoses using the DSM criteria should always be based on a clinical decision about whether someone has an impairment which has a disabling effect on their daily life. It is important for those who make diagnoses to have training so that they understand the meaning of the various criteria for autism spectrum disorders and are able to identify all the ways that an autism spectrum disorder may affect someone (including the less obvious ways). If someone gets a diagnosis of an autism spectrum disorder, it is likely to mean that someone would benefit from support or services.
However, the diagnosis is not directly linked to whether someone is eligible for support and services. Decisions over what support and services gets are generally made by social services and education professionals, often based in your local authority.
The proposals have for the first time introduced levels of severity into the diagnostic process, to indicate how much support an individual who receives a diagnosis may need. As the proposals currently stand, we believe that these severity levels are not fit for purpose, and that severity of impairment for people on the autism spectrum should only be assessed on an individual basis. It must not be linked to such a simplistic recommendation for support.
Why are these changes happening?
The diagnostic manuals are updated every so often to reflect the latest research. The last change to the DSM was in 2000, and before that in 1994.
The changes are part of wider changes to the DSM. These include changing the way conditions are classified, developing 'dimensional elements' to diagnostic criteria for all conditions to help give an indication of severity and reducing the number of 'not otherwise specified' diagnoses (such as 'Pervasive Developmental Disorder Not Otherwise Specified').
At present, the people involved in making the changes feel that there is not enough research to show a definite distinction between Asperger syndrome and high-functioning autism spectrum disorder. So they think it is more helpful to incorporate both of these terms (and others including childhood disintegrative disorder and pervasive developmental disorder not otherwise specified) into the overall category of autism spectrum disorder.
In the future it may be possible to give even more specific diagnostic details as research continues into whether there are different types of autism and what these might be.
How long have autism and Asperger syndrome been in the DSM?
Autism was first included as a separate category in DSM-3 in 1980 when it was called 'infantile autism'. This was later changed to 'autistic disorder' in 1987. 'Asperger’s disorder' (syndrome) was added into the next version, DSM-4, in 1994.
What research are the changes based on?
Read more about some of the research behind the autism changes.
Where can I find out more about the changes?
Read a list of Frequently Asked Questions about the changes to DSM-5 as a whole.