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New international diagnostic criteria for autism put under scrutiny

CARDIFF, Wales: The period leading up to this week's publication of the new fiftth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) international guidelines has provoked much controversy among mental health clinicians, academics and some individuals affected by autism.

It has been claimed that the new DSM-5 - with its revised definition of Autism Spectrum Disorder (ASD) - will mean that some children and adults with symptoms of autism and related conditions will miss out from receiving a diagnosis.

Findings from new research carried out by an international team of researchers led by Professor Susan Leekam from Cardiff University and published on May 21 in the Journal of Child Psychology and Psychiatry, indicate that these concerns may be premature.

Professor Leekam, from the School of Psychology and Director of the Wales Autism Research Centre in Cardiff, said: "The findings from this study help clarify some of the inconsistencies found in previous research about DSM-5. We have demonstrated that the way diagnostic criteria are measured and applied is an essential consideration.

"Using our international dataset from individuals who already had a diagnosis according to the existing international guidelines, we were able to investigate the full pattern of behaviours specified by the new DSM-5 guidelines. We found that children and adults with an existing diagnosis, including those with high ability, qualified for a DSM-5 diagnosis of Autism Spectrum Disorder."

Although the research literature has indicated the need for a more inclusive "spectrum" description of autism, concerns have been expressed that the new criteria might exclude some individuals who would currently receive an autism diagnosis. This is especially the case for those able individuals who might previously have received a diagnosis of Asperger syndrome or "high-functioning" forms of autism.

The research team, led by Cardiff University (together with researchers from Newcastle University, the University of Leiden (Netherlands), the University of Leuven (Belgium) and the UK (National Autistic Society), used data collected with a standardised diagnostic tool - the Diagnostic Interview for Social and Communication Disorders' to test the DSM-5 criteria.
The analyses were carried out at several levels, including testing both the main criteria and also the sub-criteria that contribute to the diagnosis. As a result, the study highlighted the importance of comparing different types of measurements of diagnostic criteria, indicating why some other research studies using the DSM-5 criteria had found that the DSM-5 under-diagnosed while others found the criteria over-diagnosed.

The researchers also compared their findings with other studies and examined the new diagnosis in children and adults of different ability levels.

Importantly, the results showed that identifying specific examples of behaviour to justify each of the DSM-5 criteria meant that individuals of different ages and levels of ability appropriately received a diagnosis of ASD. In particular, individuals with higher ability were unlikely to be missed with the new DSM-5 ASD description.

These findings may help to alleviate some of the concerns surrounding the publication of DSM-5, although further research will be needed as clinicians begin to apply the new criteria.

As co-author Professor Ina van Berckelaer-Onnes from Leiden University concludes: "While we still seem to be caught in the pitfall of labelling, DSM-5 offers us a challenge to reconsider and change our approach to diagnosing a spectrum of autism conditions."

The first authors for this study are Ms Rachel Kent and Dr Sarah Carrington, who conducted their study from the Wales Autism Research Centre at Cardiff University.

The changes in DSM-5 include the introduction of a new single diagnosis of Autism Spectrum Disorder which will replace the diagnoses of autism, Asperger's syndrome and other autism diagnostic categories. A second change will be moving from the previous diagnostic criteria that required evidence of three main areas of impairment: social interaction, communication and restricted-repetitive behaviours and interests, to two areas (domains) of impairments: social communication and restricted-repetitive behaviours and interests. In addition this last domain will now include evidence of unusual sensory and perceptual responses to the environment.

This paper will be published in a forthcoming issue of the Journal of Child Psychology and Psychiatry and is available from today in advanced online form at: [http://onlinelibrary.wiley.com/doi/10.1111/jcpp.12085/abstract].

Article: "Diagnosing autism spectrum disorder: who will get a DSM-5 diagnosis?", Kent, R., Carrington, S., Le Couteur, A., Gould, J., Wing, L., Maljaars, J., van Berckelaer-Onnes, I., & Leekam, S.R.(2013). Journal of Child Psychology and Psychiatry Published Online: XX May 2013 [DOI:10.1111/jcpp.12085]

This research was supported by an Economic and Social Research Council PhD award ES/G039399/1 to Rachel Kent. The Economic and Social Research Council (ESRC) is the UK's largest organisation for funding research on economic and social issues. It supports independent high quality research which has an impact on business, the public sector and the third sector. The ESRC's total budget for 2012/13 is Ł205 million. At any one time, the ESRC supports over 4,000 researchers and post-graduate students in academic institutions and independent research institutes.

The research was also supported by foundation funding to the Wales Autism Research Centre led by Autism Cymru and Autistica that supported Sarah Carrington and Sue Leekam.

Useful links:
Wales Autism Research Centre
School of Psychology
Economic and Social Research Council http://www.esrc.ac.uk/
Autistica http://www.autistica.org.uk/
Autism Cymru http://www.autism-cymru.org/resources/charityfacts.pdf
Newcastle University http://www.ncl.ac.uk/ihs/
University of Leuven (KU Leuven), Belgium http://www.kuleuven.be/english/
University of Leiden, Netherlands http://www.leiden.edu/

For further information or to arrange an interview, please contact:

Tomas Llewelyn Barrett
Public Relations
Cardiff University
Tel: 029 20 875 596
Mobile: 07950792532
E-mail: BarrettTL1@cardiff.ac.uk

(Source: Cardiff University and Autism Cymru, May 21, 2013)

New international diagnostic criteria for autism put under scrutiny
Researchers investigate who will get a diagnosis of Autism Spectrum Disorder using recently published mental health guidelines
The period leading up to this weeks publication of the new 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) international guidelines has provoked much controversy among mental health clinicians, academics and some individuals affected by autism.

It has been claimed that the new DSM-5 with its revised definition* of Autism Spectrum Disorder (ASD) will mean that some children and adults with symptoms of autism and related conditions will miss out from receiving a diagnosis.

Findings from new research carried out by an international team of researchers led by Professor Susan Leekam from Cardiff University and published today in the Journal of Child Psychology and Psychiatry, indicate that these concerns may be premature. Professor Susan Leekam from the School of Psychology and Director of the Wales Autism Research Centre, said:

The findings from this study help clarify some of the inconsistencies found in previous research about DSM-5. We have demonstrated that the way diagnostic criteria are measured and applied is an essential consideration.

Using our international dataset from individuals who already had a diagnosis according to the existing international guidelines, we were able to investigate the full pattern of behaviours specified by the new DSM-5 guidelines.
We found that children and adults with an existing diagnosis, including those with high ability, qualified for a DSM-5 diagnosis of Autism Spectrum Disorder."

Although the research literature has indicated the need for a more inclusive spectrum description of autism, concerns have been expressed that the new criteria might exclude some individuals who would currently receive an autism diagnosis. This is especially the case for those able individuals who might previously have received a diagnosis of Asperger syndrome or high-functioning autism forms of autism.

The research team, led by Cardiff University (together with researchers from Newcastle University, the University of Leiden ( Netherlands), the University of Leuven (Belgium) and the UK National Autistic Society), used data collected with a standardised diagnostic tool - the Diagnostic Interview for Social and Communication Disorders to test the DSM-5 criteria.
The analyses were carried out at several levels including testing both the main criteria and also the sub-criteria that contribute to the diagnosis. As a result, the study highlighted the importance of comparing different types of measurements of diagnostic criteria, indicating why some other research studies using the DSM-5 criteria had found that the DSM-5 under-diagnosed while others found the criteria over-diagnosed.

The researchers also compared their findings with other studies and examined the new diagnosis in children and adults of different ability levels.

These findings may help to alleviate some of the concerns surrounding the publication of DSM-5, although further research will be needed as clinicians begin to apply the new criteria. As co-author Prof. Ina van Berckelaer-Onnes from Leiden University concludes,
While we still seem to be caught in the pitfall of labelling, DSM-5 offers us a challenge to reconsider and change our approach to diagnosing a spectrum of autism conditions.

The first authors for this study are Ms Rachel Kent and Dr Sarah Carrington who conducted their study from the Wales Autism Research Centre at Cardiff University.

/Ends

Notes to Editors:

*The changes include the introduction of a new single diagnosis of Autism Spectrum Disorder which will replace the diagnoses of autism, Aspergers syndrome and other autism diagnostic categories. A second change will be moving from the previous diagnostic criteria that required evidence of three main areas of impairment: social interaction, communication and restricted-repetitive behaviours and interests, to two areas (domains) of impairments: social communication and restricted-repetitive behaviours and interests. In addition this last domain will now include evidence of unusual sensory and perceptual responses to the environment.

Funders
This research was supported by an Economic and Social Research Council PhD award ES/G039399/1 to Rachel Kent. The Economic and Social Research Council (ESRC) is the UK's largest organisation for funding research on economic and social issues. It supports independent high quality research which has an impact on business, the public sector and the third sector. The ESRC's total budget for 2012/13 is Ł205 million. At any one time the ESRC supports over 4,000 researchers and postgraduate students in academic institutions and independent research institutes.

The research was also supported by foundation funding to the Wales Autism Research Centre led by Autism Cymru and Autistica that supported Sarah Carrington and Sue Leekam.

For further information or to arrange an interview, please contact:
Tomas Llewelyn Barrett
Public Relations
Cardiff University
Tel: 029 20 875 596
Mobile: 07950792532
E-mail: BarrettTL1@cardiff.ac.uk

Cardiff University
Cardiff University is recognised in independent government assessments as one of Britains leading teaching and research universities and is a member of the Russell Group of the UKs most research intensive universities. Among its academic staff are two Nobel Laureates, including the winner of the 2007 Nobel Prize for Medicine, University Chancellor Professor Sir Martin Evans.
Founded by Royal Charter in 1883, today the University combines impressive modern facilities and a dynamic approach to teaching and research. The Universitys breadth of expertise in research and research-led teaching encompasses: the humanities; the natural, physical, health, life and social sciences; engineering and technology; preparation for a wide range of professions; and a longstanding commitment to lifelong learning. Three major new Research Institutes, offering radical new approaches to neurosciences and mental health, cancer stem cells and sustainable places were announced by the University in 2010.
www.cardiff.ac.uk