In
the following article the National Autistic Society explain how the
revised of the DSM (Diagnostic and Statistical Manual) affects to
people with “Asperger's disorder” because this term has been
removed from the manual.
The
American Psychiatric Association (APA) has revised its diagnostic
manual, known as Diagnostic and Statistical Manual (DSM). On this
page, we answer questions about some of the changes relating to the
diagnosis of autism and Asperger syndrome.
What
are the changes?
The
following changes have been made.
- The terms used in DSM-IV are 'autistic disorder', 'Asperger’s disorder', 'childhood disintegrative disorder' and 'PDD-NOS (pervasive developmental disorder not otherwise specified)'. The revisions to DSM-5 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 (ASD)'.
- The previous use of three areas of impairment has been reduced to two main areas:
- social communication and interaction
- restricted, repetitive patterns of behaviour, interests, or activities.
- Sensory behaviours are included in the criteria for the first time, under the '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.
- 'Dimensional elements' have been introduced which give an indication of how much someone’s condition affects them. This will help to identify how much support and in what areas of function an individual needs.
- A new condition called 'social communication disorder' has been added.
Why
are these changes happening?
Diagnostic
criteria are revised periodically by a team of experts, taking into
account the most up-to-date 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, or PDD-NOS).
The
people involved in making the changes felt that there was not enough
evidence to show a definite distinction between Asperger syndrome and
high-functioning autism spectrum disorder. They have incorporated
both of these terms (and others including childhood disintegrative
disorder and PDD-NOS) 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 to
DSM-4 in 1994.
What
research are the changes based on?
Where
can I find out more about the changes?
Visit
the DSM website's frequently
asked questions.
What
will happen to the existing theory of a 'triad of impairments'?
The
'triad of impairments' is a description of the way we understand
autism to affect an individual. The theory has not changed and people
can vary widely in how these impairments are manifested. DSM-5 does
not mean that this description has changed.
Why
have social and communication issues been put together as one
category?
In
reality, it is very difficult to separate social and communication
difficulties from each other, so it makes sense for them to become
one category.
What
do the changes mean in practice?
For
people in the UK, if you have already got a diagnosis, these changes
will not affect it.
What
are ‘specifiers’ and why have they been included?
Specifiers
have been included to help with describing the difficulties of the
individual as a whole person, for autism spectrum disorder the
specifiers include the following:
- with or without accompanying intellectual impairment
- with or without accompanying language impairment
- associated with known medical or genetic condition or environmental factor
- associated with another neurodevelopmental, mental, or behavioural disorder
- with catatonia
- onset (eg with regression) is to be described.
Will
DSM-5 apply in the UK?
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).
Using
DSM-5 criteria, how many people that were previously diagnosed with
some form of autism now fall under the ASD umbrella?
There
have been some research studies testing the new criteria and more are
underway. The results we are aware of seem to show no significant
difference in the diagnosis levels with the new criteria.
Does The
National Autistic Society agree with the new categorisation?
The
National Autistic Society welcomes the overall 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.
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-IV criteria.
Including
sensory behaviours in the criteria is 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 is also valuable.
Why
have they included hypo- and hyper-sensitivity?
Sensory
behaviours were part of the criteria in the DSM-III so this has
reinstated them. Including sensory behaviours in the criteria is 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.
What
is social communication disorder?
The
APA has created 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.
It
is characterised by difficulties with verbal and non-verbal
communication that cannot be explained by low cognitive ability. It
includes difficulty in learning and using spoken and written language
as well as inappropriate responses in conversation. The disorder
limits effective communication, social relationships, academic
achievement, or occupational performance.
What
does The National Autistic Society think about social
communication disorder?
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,
though social communication disorder is not part of the
autism spectrum, we believe that it is likely that this group could
be 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 have created this additional diagnosis of social
communication disorder.
What
will happen to someone who currently has a diagnosis of Asperger
syndrome?
If
you currently have a diagnosis of Asperger syndrome or Asperger
disorder in the UK, this will not change.
In
future, under DSM-5, people would get a diagnosis of 'autism spectrum
disorder' rather than any of the current DSM diagnostic terms, which
include 'autistic disorder', 'Asperger disorder' and 'PDD-NOS'.
However, 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
professionals who developed 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.
What
will happen to those still waiting for a diagnosis?
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).
Will
this mean that fewer people will be diagnosed with autism spectrum
disorder, or that people with Asperger syndrome won't be able to get
a diagnosis in future?
In
a study published in October 2012, the case records of 4,453 children
previously diagnosed with an autism spectrum disorder using DSM-4
system were reviewed. In addition, the records of 690 children with
other conditions, such as language disorder, were reviewed. Based on
these records, the study's authors determined how proposed DSM-5
criteria identified children with an autism spectrum disorder and
excluded those with other disorders.
The
authors found that using the proposed new criteria, fewer children
who did not have ASD were incorrectly diagnosed than when using the
old DSM-4 criteria. The DSM-5 criteria also identified 91% of those
diagnosed under the DSM-4 system. The children who would have lost
their diagnosis under the new criteria did so mainly because their
social impairments were not severe enough to meet DSM-5 criteria.
The
report did not include adults, and it remains unclear how the
proposed changes will affect them.
The
study was published in the American Journal of
Psychiatry: Application
of DSM-5 Criteria for Autism Spectrum Disorder to Three Samples of
Children With DSM-IV Diagnoses of Pervasive Developmental Disordersby
Marisela Huerta PhD, Somer L. Bishop PhD, Amie Duncan PhD, Vanessa
Hus MSc and Catherine Lord PhD.
You
can read the abstract here.
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 impairment to everyday
functioning. We believe that most people with Asperger syndrome or
high-functioning autism should continue to meet the diagnostic
criteria for autism spectrum disorder.
How
will the process of diagnosis change?
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 tools are used to
collect information in order to decide whether someone is on the
autism spectrum or not. Therefore, the criteria form the basis for
the diagnosis, but the individual clinician’s judgement is crucial.
Now
that the new criteria have been published, the various different
diagnostic tools will be revised. A research paper looking at
diagnosis using the DISCO based upon the DSM 5 criteria has been
published The results showed that using the appropriate techniques,
the DSM-5 criteria correctly identified people who should receive a
diagnosis of ASD across age and ability. In particular, the
researchers found that individuals with high ability or
high-functioning autism diagnosed by the previous DSM-IV description
were unlikely to be missed with the new DSM-5 ASD description.
Article
reference: "Diagnosing autism spectrum disorder: who will get a
DSM-5 diagnosis?", Kent, R., Carrington, S., Le Couteur, A.,
Gould, J., Wing, L. & Leekam, S. (2013).Journal
of Child Psychology and Psychiatry. Published
Online: May 2013 [DOI:10.1111/jcpp.12085]
It
will be important for those who make diagnoses to have training so
that they understand the meaning of the revised criteria, and can
identify all the ways in which an autism spectrum disorder may affect
someone (including the less obvious ways).
Will
the changes mean that people with autism lose their benefits?
Diagnoses
that are made using the DSM criteria should always be based on a
clinical decision about whether someone has an impairment that has a
disabling effect on their daily life. If someone gets a diagnosis of
an autism spectrum disorder, it is likely to mean that they will
benefit from support or services.
However, people who receive a diagnosis are not automatically eligible for support, services or benefits. Decisions about support and services are generally made by professionals in a person's local authority area.
However, people who receive a diagnosis are not automatically eligible for support, services or benefits. Decisions about support and services are generally made by professionals in a person's local authority area.
What
does this mean for the forthcoming ICD-11 revision? Will it follow
suit?
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.
The
current ICD (ICD-10) is virtually the same as DSM-4. The next version
of the International Classification of Diseases (ICD-11) is due to be
published in 2015. The World Health Organisation will consider the
changes made to DSM-5 and have said that the aim is to align the ICD
with the DSM as closely as possible, but their descriptions are often
slightly different. For example, the diagnostic names in ICD-10 are
different to those in DSM-IV.
At
present, we are not aware of any plans to change the label of
Asperger syndrome in the new edition of ICD though some professionals
think it likely that the ICD-11 will follow the DSM-5 in this
particular area.
For
more answers to questions please see the replay of the live web chat
we held with Professor Gillian Baird.
More
information:
- About the DSM-5 (wikipedia) http://en.wikipedia.org/wiki/DSM-5
- Article in web page livescience.com: