Adults with PDA

 

Adults with PDA - Experiences of The PDA Society

The PDA Society is often contacted by adults with PDA, adults who identify with the PDA profile and by the parents of children who are now adults. In some cases, these adults may have been diagnosed with the PDA profile of an Autism Spectrum Disorder (ASD) as children, but have continued to need a great deal of support throughout their life which may be reflective of the severity of the individual’s presentation, as opposed to the support that they have received throughout childhood. In other cases, parents, or the individual themselves, may have only recently discovered PDA while searching for answers to help them understand the difficulties that they may have experienced, either personally or in raising their child. In such cases it is not uncommon for these adults to have never been identified as having an ASD.

Because of this, it is not uncommon for these adults to have gone through life misunderstood and misdiagnosed. This may sometimes have led to a variety of diagnoses, including mental health disorders and/or conduct or personality disorders. Some have spent periods in mental health wards and in a few cases some adults may have been sectioned under the mental health act. Self-medication in the form of substance or alcohol abuse may also be a factor, as are brushes with the criminal justice system. Our experiences at the PDA Society appears to be echoed by some professionals’ experiences and the few surveys and peer-reviewed research that is currently available.

There is very little research available which looks at the long-term outcome for children with PDA who are either not diagnosed, or whose families do not receive appropriate help and support. However, our many years’ of experience in assessment and diagnosis, and working in inpatient and forensic settings, suggest that both adolescents and young adults with undiagnosed PDA may be at significant risk of mental health problems including depression and anxiety. They may self-harm or present with significant behaviour challenges.  Some may be wrongly diagnosed with Personality Disorders. Dr Judy Eaton, Consultant Clinical Psychologist


Summary of Surveys and Research to Date, Which Focus on Adults with PDA

There is a very real lack of research in this area and the research and surveys that have been conducted to date is likely to have included individuals who either had very significant needs, during a period when little was known about the most effective interventions for individuals with PDA, or those who received a very late diagnosis or no diagnosis at all until their situation had become very serious indeed. Therefore, it is important to view the summary results within this context and that these results may not be reflective of the condition as a whole.

Surveys

Newson and David (1999)
Newson and David conducted a survey following up a sample of 18 individuals age 16 or over who had an earlier diagnosis of PDA. This survey did establish that the PDA profile was enduring over time and that a high level of individual support had been essential in maintaining school placements. Many of the individuals were placed in some form of special education college (either on a day or residential placement), most with enhanced support. Educational attainments were disappointing, with only one participant achieving GCSE standard, although one young person declined participation in the study saying that she was at university abroad following very good support throughout school. Christie, Duncan, Fidler, Healy, Understanding PDA in Children, 2012, pg. 191-192.

In a smaller sample of six, carried out by Andrea Robson in a student research project in 2007, the picture relating to education experience and attainments was more positive. Three out of the six attained GCSE standard with one of these going on to university. Christie, Duncan, Fidler, Healy, Understanding PDA in Children, 2012, pg. 192

Parents of children in both survey groups expressed concern and fears for the future in relation to their child’s ability to live independently and gain any form of employment, and about what would happen to their son or daughter if they were no longer able to provide care, and of their social vulnerability and risk. Christie, Duncan, Fidler, Healy, Understanding PDA in Children, 2012, pg. 192

Christie et al, Understanding PDA in Children, pg. 193 continue to comment that parents found the information reported in the outcome study as very discouraging and pessimistic. But, that it is important to remember that the group of young people included in the survey may not have been fully representative of the condition as a whole. By being known to the Elizabeth Newson Centre in the first place it is likely that they were mostly young people with more significant needs; and that their difficulties may have been compounded by a late diagnosis and during a period when very little was known about effective interventions and approaches. Therefore, it would be valuable to repeat this sort of study with a larger sample, giving more of a focus to suggestions, and examples of practice, that have proved useful in supporting young people with PDA growing up and dealing with some of these issues.


Peer Reviewed Research

To date, there are currently only two peer-reviewed research papers that focus on adults with PDA, in both cases the research was based on an individual case study of an adult who had not been identified as fitting the PDA profile until adulthood, and at a time when their situation had already become incredibly serious and difficult to manage. What is encouraging from both research papers is the evidence and recommendations that identifying the PDA profile and implementing the recommended strategies, even at a later stage of live, still has the potential to be beneficial for both the individuals concerned and those supporting them.

Eaton and Banting (2012)
Research by Eaton and Banting (2012) focused on an individual case study of a young person in a secure facility, who had a history of behaviour and presentation which challenged the professionals working with her. She was diagnosed as an adult with PDA and the existing strategies and guidelines were implemented with this young person. The incidences of outbursts, aggression etc. were greatly reduced, and the authors recommended that the issues of diagnosis and post diagnosis support be resolved to better support adults living with, or suspected to have, PDA. The paper concludes that the lack of an appropriate diagnosis and inappropriate formulation of the underlying causes of challenging behaviour can lead to patients becoming impossible to manage. Many may benefit from diagnosis and autism‐specific intervention. Eaton J, Banting R (2012) Adult diagnosis of pathological demand avoidance – subsequent care planning. Journal of Learning Disabilities and Offending Behaviour

Trundle, Craig and Stringer (2017)
Research by Grace Trundle, Leam A. Craig and Ian Stringer (2017) also focused on an individual case study to explore the different clinical features of pathological demand avoidance (PDA) and antisocial personality disorder (ASPD). The study found that there were considerable similarities between ASPD and PDA making the two conditions difficult to separate. But that misdiagnosis of PDA as ASPD reduces the efficacy of treatment programmes and that the implications of these findings could prove useful in the successful risk management of offenders with PDA. Given the similar behavioural characteristics between PDA and ASPD, the prevalence of PDA among offenders may be higher than observed. Thus the diagnostic criteria, as well as a description of the behavioural characteristics, should be provided to probation offender managers at all levels to, at the very least, increase awareness of PDA Grace Trundle, Leam A. Craig, Ian Stringer, (2017) Differentiating between pathological demand avoidance and antisocial personality disorder: a case study Journal of Intellectual Disabilities and Offending Behaviour


Positive Outlooks and Contributions from Adults with PDA

A growing awareness of PDA is leading adults to identify with this condition. The PDA Society is aware of an increasing number of adults who suspect they may fit the PDA profile of ASD and who wish to identify a diagnostic service for adults, or to seek appropriate support and advice on management strategies.

This same trend is reflected in the numbers joining Facebook groups relating to PDA.  In recent years there has also been a growing number of adults who have shared their stories via social media in the form of blogs, you tube videos and PDA awareness Facebook pages. Many of which can be found in the resources section of our website. Blogs and Facebook Groups and Webinars and Videos

Many of these adults' report that they have been through a difficult and distressing period during their teenage and adult years but have, as a result, become more aware and accepting of their difficulties, limitations and strengths. As such they have been able to adjust their lifestyle to one that is more manageable and achievable for them.

This valuable insight into the lives and outcomes of a wider range of adults, either diagnosed with or suspected to have PDA, does help to provide us with a more extended and therefore inclusive level of insight into the long-term possibilities for individuals with PDA. 

From this information, it would appear that some adults are able to find and maintain gainful employment in some form or another. Those who are unable to work at a consistent level, due to their fluctuating anxiety levels and the need for down time to recharge their batteries, are finding that they can positively contribute to society in the form of various volunteer roles and supporting other individuals with PDA. It is also encouraging to learn that many of these adults have been able to find and maintain positive relationships with family, friends, partners and become parents themselves.


Case Studies and a Series of Articles Produced by the PDA Society



To provide a more balanced picture of the possible outcomes for children with PDA as they grow into adults, the PDA Society has compiled a series of adult case studies and a ‘Life with PDA’ series of articles, written by adults with PDA.


​Further information about PDA can be found in our extensive list of resources.


Please note that the PDA Society are not making any recommendations nor is responsible for the content of sites and links that are external to the PDA Society.  All content in our ‘Life with PDA’ series of articles and our ‘adult case studies’ are a representation of the individuals own opinions and views.

Please contact us if you discover any broken links.