Proposed 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 NAS thinks,
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, DSM5, 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, Rett’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; and
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.
Click here to read the DSM-5 proposals on autism spectrum disorders:
http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=94
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What does the NAS think of the proposals?
The new diagnostic criteria
The NAS believes that the proposed DSM-5 diagnostic criteria are helpful,
clearer than the previous DSM-4 criteria, and in themselves will not lead to a
reduction in the number of people who would get a diagnosis of autism
spectrum disorder.
Severity levels
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:
1. There would need to be much more detail to make the severity levels
appropriate and widely applicable.
2. 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.
3. Key areas, including sensory aspects, are not mentioned within the
severity levels.
4. 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.
5. The linking of a clinical diagnosis to recommendations of support may
create expectations for people on the 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.
6. 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 subgroups
NAS 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
underdiagnosis of girls and women with autism. They recommend that
subgroup names for particular autism spectrum disorders are kept in
the new diagnostic criteria, including a description of Asperger
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syndrome, to make it very clear that this continues to be a part of the
autism spectrum.
Early in 2010 the NAS 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 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 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 subgroup of people on the autism
spectrum. When the aim of DSM-5 is to avoid having autism subgroups, we
do not believe it is helpful to create an additional diagnosis of social
communication disorder.
The NAS is writing 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 a diagnosis of
autism spectrum disorder with similarities to Asperger syndrome.
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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. You can view the very early proposals for
ICD-11 here:
http://apps.who.int/classifications/icd11/browse/f/en#/http%3a%2f%2fwho.int
%2ficd%23F84
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. The NAS believes
that most people with Asperger syndrome or high functioning autism should
continue to meet the proposed diagnostic criteria for autism spectrum
disorder.
However, the NAS believes 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. The NAS is
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 page: http://www.dsm5.org/Pages/Default.aspx
How will these criteria be used to make diagnoses?
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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, The NAS believes 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, the NAS is 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 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, The NAS believes
that these severity levels are not fit for purpose, and that severity of
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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 2000, and before that 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.
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.
What research are the changes based on?
You can read more about some of the research behind the autism changes
here:
http://www.dsm5.org/Research/Pages/AutismandOtherPervasiveDevelopment
alDisordersConference(February3-5,2008).aspx
Can I do anything?
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The DSM-5 website says that there is a further consultation period open to the
public from spring 2012. If you have any comments or concerns about the
changes you can contact the American Psychiatric Association. Details are at
the bottom of this page: http://www.dsm5.org/Pages/Default.aspx
You may particularly want to make the following points:
 The severity levels are unhelpful as they are currently drafted. They do not
reflect the very wide range of ways that autism spectrum disorders may
affect people. In particular, the minimum severity level is much higher
than the minimum criteria for a diagnosis. The severity levels should not
be directly linked to recommendations for support.
 A description of Asperger syndrome should be included in the DSM to
make it clear that this is part of the autism spectrum.
Where can I find out more about the changes?
There is a list of Frequently Asked Questions about the changes to DSM-5 as
a whole. You can access them here:
http://www.dsm5.org/about/Pages/faq.aspx
February 2012
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