The Evidence that Suggests that PDA Does Exist
The debate between parents and among professionals regarding if PDA is a definable sub group within it’s own right or if this is just another term for a female form of autism, another name for ASC with co morbid Oppositional Defiant Disorder or another label to describe a stand alone ODD diagnosis will undoubtedly continue to be discussed and debated. At the moment I don’t suppose that there is a definitive answer and many conclusions will come down to personal experiences and opinions which will also be influenced depending on how much in-depth research the individual has done into the subject matter. Hopefully more research into this area will help to clarify the issue of exactly where PDA stands in relation to other conditions that are already listed in the diagnostic manuals.
It goes without saying that I am of the opinion that PDA is a definable sub group within the ‘Autism Spectrum’ that cannot be explained by a combination of labels that are already available. As far as I am concerned the PDA profile is a unique cluster of symptoms that cannot be found or adequately explained by putting together a mix and match combination of other labels. More importantly the strategies for PDA management are the only ones that work for many individuals with this presentation. That said this is only ‘my opinion’ based on my experiences of living with a child with PDA combined with the research and reading that I have done and the vast amount of time that I have spent in support groups. I fully accept that one day my opinion may prove to be wrong but for now I’m sticking to it.
So, personal opinions aside, here is the most relevant information that I can find from highly respected professionals, which should hopefully give many, who are beginning to investigate PDA more thoroughly, a fast track pass to the most informative documents and publications. Hopefully from this information any parents or professionals who stumble across this blog post, but are in two minds about PDA, will be able to use the information in order to make their own opinions and conclusions given all of the facts and research that are currently available.
So let us go back in time and start at the beginning.
A collection of Elizabeth Newson’s Early Research, Observations and Papers.
Pathological Demand Avoidance Syndrome, diagnostic criteria and relationship to autism and other developmental coding disorders; Elizabeth Newson, Child Development Research Unit, University of Nottingham; 1989
http://www.norsaca.org.uk/sites/default/files/downloads/1.1.pdf
Pathological Demand Avoidance Syndrome: a statistical update; Elizabeth Newson; Durham Conference; 1996
http://www.norsaca.org.uk/sites/default/files/downloads/1.4.pdf
Pathological Demand Avoidance Syndrome: discriminant function analysis demonstrating its essential differences from autism and Asperger’s syndrome; Durham Conference; 1998
http://www.norsaca.org.uk/sites/default/files/downloads/1.3.pdf
Communication development of children with Pathological Demand Avoidance Syndrome; Charlotte Graham-White; Early Years Diagnostic Centre, Nottingham; 2002
http://www.norsaca.org.uk/sites/default/files/downloads/1.6.pdf
Published Peer Reviewed Journal Articles discussing the diagnostic features of PDA and the best practice for strategies and management.
Elizabeth Newson et al (2003) Pathological Demand Avoidance Syndrome: a necessary distinction within the pervasive developmental disorder: Archives of Diseases in Childhood
http://adc.bmj.com/content/88/7/595.f...
Phil Christie (2007) The Distinctive Clinical and Educational Needs of Children with Pathological Demand Avoidance Syndrome. Guidelines for Good Practice: Good Autism Practice Journal.
http://www.norsaca.org.uk/sites/default/files/downloads/5.2.pdf
Eaton J, Banting R (2012) Adult diagnosis of pathological demand avoidance – subsequent care planning. Journal of Learning Disabilities and Offending Behaviour.
http://www.emeraldinsight.com/doi/abs/10.1108/20420921211305891
Gillberg, Christopher (2014) Commentary: PDA – Public Displays of Affections or Pathological Demand Avoidance?:
Journal of Child Psychology and Psychiatry.
http://onlinelibrary.wiley.com/doi/10.1111/jcpp.2014.55.issue-7/issuetoc
Published Peer Reviewed Journal Articles discussing the unique profile of PDA and comparing the features of individuals with PDA to the features and profile of individuals with a more typical presentation of ASC and those with Opositional Defiant Disorder (ODD) and Conduct Disorder (CD).
O’Nions E, Viding E, Greven CU, Ronald A & Happé F (2013) Pathological Demand Avoidance (PDA): exploring the behavioural profie:
Autism: The International Journal of Research and Practice.
http://m.aut.sagepub.com/content/early/2014/04/29/1362361313481861.full.pdf
Or here is the pre published version which can be viewed in full without payment.
https://docs.google.com/viewer?a=v&pid=sites&srcid=ZGVmYXVsdGRvbWFpbnxsaXpvbmlvbnN8Z3g6MjVjN2U3Y2I5NWUxNWMzMg
O’Nions, E., Christie, P., Gould, J., Viding, E. & Happé, F. (2013) Development of the ‘Extreme Demand Avoidance Questionnaire’ (EDA-Q): Preliminary observations on a trait measure for Pathological Demand ;:Journal of Child Psychology and Psychiatry.
http://www.ncbi.nlm.nih.gov/pubmed/24117718
Or here is the pre published version which can be viewed in full without payment.
https://docs.google.com/viewer?a=v&pid=sites&srcid=ZGVmYXVsdGRvbWFpbnxsaXpvbmlvbnN8Z3g6N2EyNjMyZmM1NDZjNjI5OQ
O’Nions L and Happe F discuss the differences and similarities between PDA and ODD at the PDA Conferences. Click on the link and then open up the document showing on the bottom left of your screen and view the slides from conference speeches.
https://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=0CCMQFjAA&url=https%3A%2F%2Fwww.edgehill.ac.uk%2Fdocuments%2Fhealth%2Fconferences%2Fcommunication%2FLizONions.ppt&ei=AZ4iVKnyBuWu7Abyi4HoCQ&usg=AFQjCNFemYGRJoz49MdQOQYDh6RHxO8E_Q&sig2=MPaA-uyd3R2NPylH8FophA
Professionals Discuss the Differences between PDA V ODD
A guest post from Liz O’Nions on my blog written prior to the research being published in 2014.
http://understandingpda.com/2013/04/17/an-informative-and-thought-provoking-reply-regarding-the-different-profiles-of-odd-and-pda/
Phil Christie clarifies the differences between PDA v ODD in a question and answer session conducted by the PDA Society to celebrate PDA Awareness Day. Please refer to question Two for this information however question one is a very interesting read also.
http://www.pdasociety.org.uk/what-is-PDA/qanda/phil-christie
Is PDA another name for the Female Profile
Judith Gould Discusses the Overlap and the Differences Between the Female Presentation of Asperger Syndrome and PDA. Click on the link and then open up the document showing on the bottom left of your screen and view the slides from conference speeches.
https://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&ved=0CCsQFjAB&url=http%3A%2F%2Fwww.autism.org.uk%2F~%2Fmedia%2Fnas%2Fdocuments%2Fnews-and-events%2Fnas-conferences%2Fpathological-demand-avoidance%2Fpda-conference-plenary-session-jacqui-smith-and-judy-gould.ashx&ei=Y58iVKHKJ-md7gbR0IC4Cw&usg=AFQjCNEu4gK0q5ts7pacbPclpUpkrreqUg&sig2=Mww9nqCcvJnGmKvy8FDXng
Information From The National Auti stic Society
The National Autistic Society published an article about PDA in their magazine, Communication, in 2009 and later updated their website to include information about the condition. In recent years they have co hosted the annual PDA conferences in conjunction with Norsaca and published an article on PDA by Margo Duncan in their monthly magazine. The information about PDA on the NAS website is due to be updated in the iminent future. This update will hopefully reflect that PDA is included in the family ASC as a defianable sub group within its own right.
Phil Christie and Margo Duncan discuss the Features Of PDA
http://www.autism.org.uk/about-autism/related-conditions/pda-pathological-demand-avoidance-syndrome.aspx
Published Books
Christie P, Duncan M, Healy Z & Fidler R (2011) Understanding Pathological Demand Avoidance in Children. London: Jessica Kingsley Publishers.
http://www.amazon.co.uk/Understanding-Pathological-Avoidance-Syndrome-Children/dp/1849050740
Forthcoming Publications for 2015
Books
Fidler R & Christie P (2015) Can I Tell You About Pathological Demand Avoidance Syndrome. London: Jessica Kingsley Publishers.
http://www.amazon.co.uk/about-Pathological-Demand-Avoidance-Syndrome/dp/1849055130/ref=sr_1_1?s=books&ie=UTF8&qid=1411557865&sr=1-1&keywords=can+i+tell+you+about+pathological+demand+avoidance+syndrome
Sherwin J (2015) My Daughter is Not Naughty. London: Jessica Kingsley Publishers
http://www.amazon.co.uk/Pathological-Demand-Avoidance-Syndrome-Daughter/dp/1849056145/ref=sr_1_1?s=books&ie=UTF8&qid=1411557909&sr=1-1&keywords=my+daughter+is+not+naughty
Thesis
O’Nions E (2014). PDA Parent Interview. Unpublished doctoral dissertation, King’s College London, London, United Kingdom. Hopefully this will be available to read in full in the near future. The first chapter of Liz’s thesis is available to read now via the following link. The actual thesis is about 250 pages long.
https://docs.google.com/viewer?a=v&pid=sites&srcid=ZGVmYXVsdGRvbWFpbnxsaXpvbmlvbnN8Z3g6MWVlYTZjZmY0ZDAyZTg3OA
A Bit of Information about a Few of the Authors of these Publications and Research Papers.
Professor Elizabeth Newson Newson worked closely for much of her career with her husband, John; she established an influential research unit at Nottingham University and became an international expert in autism.
From 1970 the unit focused on training educational and clinical psychologists. During this period she also became involved with Norsaca, a Nottingham-based autism charity, and in 1970 was instrumental in setting up Sutherland House, a school for children with autism based on several sites around Nottinghamshire. She remained involved with the school as an adviser until 2003.
During the latter years of her career Newson transformed the university-based clinic into a diagnostic service attached to Sutherland House which subsequently became the Elizabeth Newson Centre.
Newson first coined the term PDA in the 1980’s to describe a group of children, who had been referred to her, that displayed a unique cluster of symptoms that were similar to Autism and Asperger Syndrome but whose profiles also had striking differences. However this unique group of children all shared the same profile as each other and the most overriding feature was an obsessive need to avoid the demands of everyday life and to be in control of their environment at all times.
When she was made professor of developmental psychology at Nottingham in 1994, she dedicated her inaugural lecture to talking about pathological demand avoidance syndrome (PDA), a subtype of autism she had identified and that is characterised by an avoidance of the ordinary demands of life. PDA has become increasingly recognised as part of the range of autism conditions.
Newson became an honorary fellow of the Royal College of Paediatrics and Child Health in 1993, and was appointed OBE for her services to children on the autism spectrum in 1999.
Phil Christie is a Consultant Child Psychologist to the Elizabeth Newson Centre (ENC) which provides diagnostic assessments of children from all over the UK and has a particular specialism in Pathological Demand Avoidance syndrome. The ENC is part of Sutherland House Children and Young People’s Services, administered by NORSACA (a regional autism charity). Phil was Director of Services and Principal of Sutherland House School for 30 years. Sutherland House is a non-maintained special school for 94 pupils and students with autism between the ages of 3 and 19. The school was judged to be outstanding by OFSTED in 2007 and 2011.
The Elizabeth Newson Centre For a number of years Phil was a team leader on the Autism Services Accreditation Programme, reviewing the quality of services for children with autism throughout the UK. Phil is an Associate Editor of ‘Good Autism Practice’ and previously undertook the same role for ‘Autism: International Journal of Research and Practice’. He was elected as Chair of the advisory council for the Autism Education Trust and is now on the programme board. Phil has been involved in conferences, training sessions and presentations on a range of topics related to the autism spectrum across the UK and also in South Africa, Spain, Sweden, Holland, Finland, Romania, Ireland, Belgium and Greece.
Phil also works on an independent basis and has been commissioned to carry out reviews of school therapy services, to provide tailor made training for a range of organisations and carry out individual assessments of children and young people.
Liz O’Nions is a post-doctoral research associate at University College London, working under the supervision of Prof. Essi Viding in the Developmental Risk and Resilience Unit. Before this, she completed a PhD at the Social, Genetic & Developmental Psychiatry Centre, and part of the Institute of Psychiatry (King’s College London). Her PhD supervisors were Professor Francesca Happe and Professor Essi Viding.
Dr Judith Gould is Director of the NAS Lorna Wing Centre for Autism. She is a Chartered Consultant Clinical Psychologist with over 40 years’ experience, specialising in autism spectrum disorders and learning disabilities. Before becoming Director of the Centre she worked as a member of the scientific staff of the Medical Research Council Social Psychiatry Unit and was a Senior Lecturer at the Institute of Psychiatry, University of London. She has also worked as a clinical psychologist within both health and social services. She has published widely in the field of autism spectrum disorders and her research work with Lorna Wing led to the now-accepted concept of a spectrum of autistic conditions.
Essi Viding is Professor of Developmental Psychopathology at the UCL Faculty of Brain Sciences, a director of the Developmental Risk and Resilience Unit and an associate of the Institute of Psychiatry. Viding researches persistent antisocial behaviour and development disorders using cognitive experimental measures, brain imaging and genotyping. Viding is the 2011 British Psychological Society Spearman Medal winner.
Francesca Gabrielle Elizabeth Happé is Professor of Cognitive Neuroscience and Director of the MRC Social, Genetic and Developmental Psychiatry Centre at the Institute of Psychiatry, King’s College London. Her research focuses on autism spectrum conditions, specifically attempting to understanding social cognitive processes in these conditions
Margaret Duncan is a GP and parent to a child with PDA. She is the national coordinator of the PDA Society which is an internet based group providing information and support for parents and professionals.
