Is it Time to Give Up on a Single Diagnostic Label for Autism?

That was the ruling by the editors of the authoritative Diagnostic and Statistical Manual in 2013, but it remains controversial

By Simon Baron-Cohen on May 4, 2018

Five years ago, the American Psychiatric Association (APA) established autism spectrum disorder (ASD) as an umbrella term when it published the fifth edition of the Diagnostic and Statistical Manual (DSM-5), the primary guide to taxonomy in psychiatry. In creating this single diagnostic category, the APA also removed the subgroup called Asperger syndrome that had been in place since 1994.

At the 2018 annual meeting of the International Society for Autism Research (INSAR), there will be plenty of discussion about diagnostic terminology: Despite the many advantages of a single diagnostic category, scientists will be discussing whether, to achieve greater scientific or clinical progress, we need subtypes.

THE ADVANTAGES OF A SINGLE DIAGNOSTIC LABEL

The APA created a single diagnostic label of ASD to recognize the important concept of the spectrum, since the way autism is manifested is highly variable. All autistic individuals share core features, including social and communication difficulties, unusually narrow interests, a strong need for repetition and, often, sensory issues. Yet these core features vary enormously in how they are manifested, and in how disabling they are. This variability provides one meaning of the term spectrum, and the single diagnostic label ASD makes space for this considerable variability.

Read the rest of the article here.

Asperger’s not in DSM-5 mental health manual

Autism and DSM5

Autism and DSM5

‘Asperger’s syndrome dropped from psychiatrists’ handbook’, is the headline in The Guardian. The news is based on a press release from the American Psychiatric Association (APA) announcing the approval by their Board of Trustees of a revised fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). The DSM was first published in 1952 and is often referred to as the ‘psychiatrists’ bible’ in the US.

The DSM is essentially designed to be a ‘user manual to diagnose mental illness’ – providing US psychiatrists with clear definitions of what pattern of symptoms correspond to specific conditions. This fifth revision, which has been a controversial issue of ongoing debate among psychiatrists and medical ethicists, is due out in May 2013.

One (amongst many) of the controversial decisions taken by the panel, made up of over 1,500 mental health experts, involved in drawing up the new draft guidelines, is to remove Asperger’s syndrome as a separate diagnosis and replace it within the term ‘autism spectrum disorder’.

In the terminology of the DSM-5 – Asperger’s syndrome would be seen as being at the ‘upper end’ of the autistic spectrum disorder (ASD). That means people with this type of ASD would normally have unaffected intelligence and language development, but would have milder symptoms affecting social interaction, behaviour and language comprehension.

message about DSM-5 written by the president of the APA (PDF, 105Kb), Dr Dilip Jeste, touches on the complexities and challenges of revising an established diagnostic system, as reported in the media. These include conflicting views among experts and the under-diagnosis and over-diagnosis of patients.

Dr Jeste also says that narrowing diagnostic criteria is often blamed for excluding some patients from insurance coverage in the US, yet efforts to diagnose more patients are sometimes criticised for expanding the market for the pharmaceutical industry.

The chair of the taskforce responsible for overseeing the DSM-5 revisions, Dr David Kupfer, said: ‘Our work has been aimed at more accurately defining mental disorders that have a real impact on people’s lives, not expanding the scope of psychiatry’.

How much of an impact will the DSM-5 have on care in the UK?

Despite the media hype, the revised classifications in DSM-5 will have limited impact on individuals who receive mental health care in the UK, at least in the short-term.

Psychiatrists in the UK tend to use the World Health Organisation’s International Classification of Diseases (ICD) system to diagnose mental health conditions, rather than DSM, which is used in the US.

Also, the term ‘autistic spectrum disorder’ (and the concepts underpinning it) have been widely used in the UK for many years. However, in the long-term, it is difficult to predict the potential impact the DSM-5 will have on the future diagnosis and treatment of mental health conditions.

Earlier versions of the DSM have had considerable influence, both in the US and across the world, in shaping opinions and driving research agendas. For example, it was the publication of the previous version (DSM-4) in 1994 that helped ‘popularise’ attention deficit hyperactivity disorder.

What is the DSM-5?

The DSM-5 (the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders) is produced by the American Psychiatric Association (APA) and is the diagnostic manual used by US clinicians and researchers to diagnose and classify mental disorders. The Diagnostic and Statistical Manual (DSM), first published in 1952, has undergone several revisions to take into account progress in medical and scientific knowledge and an advanced understanding of mental illnesses.

The DSM-5 is set for publication in May 2013 and will be a revision of the DSM-4 that was produced nearly 20 years ago.

According to a message from APA President, Dr Jeste, the DSM-5 reflects the best scientific understanding of psychiatric disorders and will optimally serve clinical and public health needs. Dr Jeste says ‘the hope is that the DSM-5 will lead to more accurate diagnoses, better access to mental health services, and improved patient outcomes.’

The DSM is broadly based on the classification system published by the World Health Organization (WHO), called the International Classification of Diseases (ICD).

The ICD system is used by the UK and other members of the WHO. It allows doctors to look at clusters of symptoms to form diagnoses for all health-related conditions, including mental health conditions.

The current version is ICD-10, and it is ICD-10, rather than DSM, that psychiatrists in the UK predominantly use to diagnose mental health conditions.

Is Asperger’s syndrome no longer being considered a mental illness?

Autism and Asperger’s syndrome are both part of a range of related developmental disorders, which are characterised by:

  • a person having problems with social interactions with others
  • difficulty communicating with others
  • the person tends to have a restricted, repetitive collection of interests and activities or rigid routines or rituals

The main difference between autism and Asperger’s is that people with ‘classic autism’ tend to have some degree of intellectual impairment. According to the press release, several categories from DSM-4 (including Asperger’s syndrome) will be replaced by a single diagnostic category of autism spectrum disorders in DSM-5. The following disorders will be incorporated under the diagnosis of autism spectrum disorders:

autistic disorder

Asperger’s syndrome

childhood disintegrative disorder

pervasive developmental disorder (not otherwise specified)

The press release says that this is to help more accurately and consistently diagnose people with autism. This does not mean that Asperger’s syndrome is being removed from the DSM classification system, only that it is being placed under a single diagnostic category.

Under ICD-10, both autism and Asperger’s syndrome are classed under what are known as ‘pervasive developmental disorders’ – pervasive meaning that the characteristic features of these conditions (for example, social interaction and communication problems) are a feature of the person’s functioning in all life situations.

What new mental illnesses does the DSM-5 list?

According to the press release, the DSM-5 will include approximately the same number of disorders that were included in the DSM-4.

Additional mental disorders set to be included in the DSM-5 are:

disruptive mood dysregulation disorder – which is intended to address concerns about potential over diagnoses and overtreatment of bipolar disorder in children

excoriation (skin picking) disorder – which will be included in the obsessive-compulsive and related disorders section

hoarding disorder – which is said to be supported by extensive scientific research on this disorder and included to help characterise people with persistent difficulty discarding or parting with possessions regardless of their actual value

What other changes are included?

The revised manual (DSM-5) will include a section on conditions that require further research before their consideration as formal disorders. This section will include:

attenuated psychosis syndrome – where people have psychotic-like symptoms (such as hearing voices), but not full-blown psychosis (unable to tell the difference between reality and their imagination)

internet use gaming disorder – essentially, an online gaming addiction

non-suicidal self-injury – self-harming behaviour, but not with the intent of ending life

suicidal behavioural disorder – a type of personality disorder that increases the risk of a person taking their own life

Disorders that will not be included in the revised manual (DSM-5) include:

anxious depression – a term proposed to describe mild to moderate symptoms of anxiety and depression

hypersexual disorder – so called ‘sex addiction’. For more information see our October 2012 analysis “Media claims ‘sex addiction is real“.

parental alienation syndrome – a term proposed to describe a child who ‘on an ongoing basis, belittles and insults one parent without justification’

sensory processing disorder – a term proposed to describe people who have difficulties processing sensory information (for example, visual information or sounds)

Other changes to the DSM-5 reported in the press release include:

a broadening of the criteria for specific learning disorders

a new chapter on post-traumatic stress disorder that will include information for children and adolescents

removal of certain bereavement exclusion criteria – making clearer the difference between natural feelings of grief and mental illness.

Does any of this affect me?

Until the publication of the DSM-5 in May 2013, there will be no changes to diagnoses of mental disorders. Importantly, the DSM-5 is a US publication, so its main impact will be in the US where clinicians use the DSM-5 to diagnose mental disorders.

Clinicians in the UK predominantly use the ICD-10 system to diagnose mental disorders, while the DSM classification system is mostly used for research purposes.

As mentioned, in the long-term, the new version of the DSM may have long-term healthcare, as well as cultural and political, implications that are impossible to predict.