Research Autism is holding a conference today to explore current developments in autism diagnosis, classification, and the implications for treatments and services. The conference will be chaired by the world renowned psychiatrist, Dr Lorna Wing, Trustee of Research Autism, who first introduced the term Asperger syndrome in the UK, in 1981. The current diagnostic system is under review by both the International Classification of Diseases (ICD) and The Diagnostic and Statistical Manual of Mental Disorders (DSM). The 5th edition of the DSM is expected to be available in 2013. It is considered likely that the new criteria will exclude the term Asperger syndrome as a distinct diagnosis, incorporating this disorder into the broader category of Autistic Disorder, but rated by severity.
The UK charity is also honoured to introduce a new patron, the Rt. Hon. John Bercow M.P., Speaker of the House of Commons and lead of the Bercow Review of Services for Children and Young People with speech, language and communication needs; the Speaker will make the welcome address to open the conference.
Eminent speakers on the day will also discuss the latest developments in neuroscience, autism screening and diagnostic practices, the efficacy of treatment approaches and the impact of sensory differences.
The speakers include, amongst others: Dr. Christine Ecker, Prof. Simon Baron Cohen, Prof. Digby Tantum, Prof. Ann LeCouteur, Prof. Patricia Howlin and Prof. Terry Brugha; all leading experts in the field of autism research.
Research Autism patron, the Rt. Hon. John Bercow M.P., Speaker of the House of Commons said: "Research Autism is the only UK charity whose sole focus is to evaluate and conduct scientific research into autism interventions. Research has to be the starting point if we are better to understand this complex condition, and it is for this very reason I chose to support them as patron. The charity is committed to a programme of ground breaking research that is important to the autism community and that will improve quality of life and support social inclusion; something to which I believe every UK citizen has the right."
The DSM is published by the American Psychiatric Association (APA) and provides a common language and standard criteria for the classification of mental disorders. It is used in the USA and other parts of the world by clinicians, researchers, and policy makers. The coding system used in the DSM is also designed to correspond with codes used in the ICD, but there are some differences. The ICD-10 is a more commonly used guide in the UK and Europe.
Richards Mills, Research Autism’s Research Director said: “The proposed DSM and ICD-10 change is a double edged sword. We welcome any move that will make diagnosis clearer and more accessible, and lead to better targeted treatments and improved outcomes, but there are many who are concerned that removing the term Asperger syndrome from the criteria will affect recognition of their condition and their existing entitlement to support may be lost. It has taken almost half a century for the term autism to be recognised and thirty years for Asperger syndrome. There is a real concern that the advances in recognition will be delayed by this change, with serious consequences for those individuals and families caught up in the confusion.
It is also argued that there are clear clinical differences between Asperger syndrome, where the person may be of average or high IQ with good language - and high functioning autism where the individual may be of good intelligence but with impaired language. There is concern that the importance of these subtleties may be lost in translation. Many local authorities and GP’s still have a long way to go in understanding autism and their specific needs. I worry that this change could hinder the progress that has already been made, and confuse entitlement to support further, especially in the current economic climate”
There are currently over half a million children and adults with autism in the UK, the large majority of whom are adults. But the number of those diagnosed with autism is on the rise. Last year, GPs reported 120,000* new adult patients presenting with suspected undiagnosed high-functioning autism. The economic cost of support for this vulnerable group is just over £25 billion** each year, yet the provision of services across the UK remains inconsistent.
Geoffrey Maddrell, Chairman of Research Autism said: “It is imperative to hold a conference such as this, if we are to further understand the classification of this complex and far-ranging condition.
As the Lancet reported earlier this year”: “We still do not know what autism is, or to be more precise what the ‘autisms’ are...there are very few published trials in autism, for behavioural interventions, traditional pharmaco-therapy, or complementary therapies. Is this due to non efficacious treatments, lack of sensitive outcome measures, or heterogeneity of autism – or perhaps all three?”
Maddrell continues:“In fact, it was for this very reason Research Autism was established. We may not know the exact causes of autism; but there is an essential need for better coordinated and informed responses across the lifespan; the starting point for this has to be research. We know that with correct and timely intervention for both children and adults, the quality of life and outlook can be much improved. Our vision is to see people with autism living fulfilling lives, where they feel empowered, and can make a valued contribution to their community.”
*The NAO Report 2009 explored the needs of adults with autism and surveyed 150 local authorities and their NHS partners between September 2008 and February 2009. The NAO also conducted in-house research and surveyed 1,000 GP’s via Doctors.net.uk
**Knapp et al., The Economic Consequences of Autism in the UK. http://www.lse.ac.uk/collections/pressAndInformationOffice/PDF/EconomicCostsofAutism.pdf
The Research Autism ‘Seeing the Light – or ticking the box?’ Conference will be held on Tuesday 2nd November from 9.00am-4.30pm at Church House, Deans Yard, Westminster, London, SW1P 3NZ. For further media information please contact: Atia Islam Talukder on 07976 704025 or email firstname.lastname@example.org
Notes to Editors:
Research Autism’s sole focus is on interventions in autism. We were established as an independent charity with the support of the National Autistic Society to address concerns of its members about the dearth of high quality scientific research in this area. Working with individuals with ASC and with Cambridge University as our research sponsor, we have the active support of the most eminent figures from the world of autism; they give their time for free. Our web based information service www.researchautism.net through which we disseminate research findings, attracts over 25,000 visitors a month. Research Autism is committed to a programme of research that is important to the autism community that will improve quality of life and support social inclusion.
Asperger syndrome or Asperger's syndrome (AS): is an autism spectrum condition (ASC) that is characterised by significant difficulties in social interaction, along with restricted and repetitive patterns of behaviour and interests. It differs from other ASC by its relative preservation of linguistic and cognitive development. Asperger syndrome (correctly pronounced with a hard g as in hamburger) is named after the Austrian paediatrician who, in 1944, described children who lacked non-verbal communication skills, demonstrated limited empathy with their peers, and were physically clumsy. The term was introduced into the UK by Dr Lorna Wing who wrote the first clinical accounts in English, fifty years later, it was standardised as a diagnosis but many questions remain about aspects of the syndrome, and further scientific, evidence based research is required into prevalence and cause and the best ways of helping those affected.
The Diagnostic and Statistical Manual of Mental Disorders (DSM) is published by the American Psychiatric Association. DSM is the standard classification of mental disorders used by mental health professionals in the United States and other parts of the world. The current edition, DSM-IV-TR, is used by professionals in a wide array of contexts, including psychiatrists and other physicians, psychologists, social workers, nurses, occupational and rehabilitation therapists, and counsellors, as well as by clinicians and researchers of many different orientations. It is used in both clinical settings as well as with community populations. In addition to supplying detailed descriptions of diagnostic criteria, DSM is also a necessary tool for collecting and communicating accurate public health statistics about the diagnosis of psychiatric disorders. The fifth edition (DSM-5) is currently in consultation, planning and preparation, due for publication in 2013.
International Classification of Diseases (ICD). ICD-10 was endorsed by the 43rd World Health Assembly in May 1990 and came into use in World Health Organisation (WHO) Member States from 1994. The classification is the latest in a series which has its origins in the 1850s. The first edition, known as the International List of Causes of Death, was adopted by the International Statistical Institute in 1893. WHO took over the responsibility for the ICD at its creation in 1948 when the Sixth Revision, which included causes of morbidity for the first time, was published. The World Health Assembly adopted in 1967 the WHO Nomenclature Regulations that stipulate use of ICD in its most current revision for mortality and morbidity statistics by all Member States. The ICD is the international standard diagnostic classification for all general epidemiological, many health management purposes and clinical use. These include the analysis of the general health situation of population groups and monitoring of the incidence and prevalence of diseases and other health problems. It is used to classify diseases and other health problems recorded on many types of health and vital records including death certificates and health records. In addition to enabling the storage and retrieval of diagnostic information for clinical, epidemiological and quality purposes, these records also provide the basis for the compilation of national mortality and morbidity statistics by WHO Member States.
For further information go to: www.researchautism.net