Pathological Demand Avoidance syndrome — yes it’s a thing

What’s more, tomorrow (the 15th of May) is PDA Awareness Day. I’m posting the below in anticipation of this, and also of Channel 4's ‘Born Naughty?’, episode 1 of which airs at 8pm this evening in the UK, and features a little girl named Honey who has PDA.

In an effort to help raise awareness, a couple of months ago I set to writing a feature about the condition, which is an under-recognised and relatively rare condition on the autism spectrum, which my own almost-seven-year-old daughter is diagnosed with. Although those with PDA have to contend with the defined ‘triad of impairments’ and repetitive behaviour patterns common to others on the autism spectrum, the defining trait of PDA is an anxiety-driven resistance and avoidance of the demands of everyday life, which increase exponentially alongside demands.

Christopher Gillberg, professor of child and adolescent psychiatry at the University of Gothenburg, acknowledges in a recent commentary in the Journal of Child Psychology and Psychiatry that PDA is:

“one of the most ‘difficult-to-treat’ constellations of problems in the whole of child and adolescent psychiatry. Strategies developed for ASD, Oppositional Defiant Disorder or ADHD are often ineffective and parents, teachers and clinicians may be driven half-crazy by the child’s stubborn refusal to cooperate by avoidant, manipulative and exhibitionist-style shocking behaviours.”

In putting together my feature (which I’m still in the process of securing a home for) I was fortunate enough to speak with several figures working to expand our understanding of the condition, including Francesca Happé, professor of cognitive neuroscience at MRC and president of the International Society for Autism Research; UCL post-grad researcher Dr Liz O’Nions, whose recent study is helping to raise clinical awareness of the syndrome; and consultant child psychologist Phil Christie, who has co-authored two books on the subject and continued the work of the late Elizabeth Newson, who defined the condition in the early 1980s.

There are many reasons an autism diagnosis is valuable to the person that receives it and to their families. In the case of PDA, the major one is not just the ‘handling’ guidelines that signpost how to best support a person with the condition (in short: exactly the opposite of how most people instinctively think it should be done), but lack of awareness and general understanding. To mark PDA Awareness Day, which, as noted, occurs tomorrow, the 15th of May, I’ll share, in the form of interviews, the views of the people I spoke with. First up, education specialist Ruth Fidler.

Interview: Ruth Fidler, autism specialist

The first of these interviews is with Ruth Fidler, who is the co-author of Understanding Pathological Demand Avoidance Syndrome in Children and Adolescents and Can I Tell You about Pathological Demand Avoidance Syndrome. Ruth is a lecturer and education consultant specialising in autism. Most of the questions and answers in this interview pertain to children and young people, although as with any autism spectrum condition, PDA is a lifelong condition.

Why is diagnosis important?

Getting an appropriate diagnosis matters both to the individual themselves as well as to the people who live and work with them. The quality of the diagnosis is very important and the best forms of diagnostic assessments bring together an understanding of the diagnosis with the impact of that condition on the individual. For the adults supporting children with PDA a diagnosis is important because it can gain access to services and because it can help organisations or schools to plan strategically, but more significantly getting a diagnosis helps them better understand the child or young person with PDA. Many parents and teachers will have exhausted traditional strategies which they may have found to be highly successful with other children but which are much less effective with this group, therefore they will improve their understanding of and their approach to children with PDA the better sense they can make of the condition. As for the children and young people themselves, getting a diagnosis will not only benefit them by placing them alongside people who understand them but over time, will also help them to understand themselves. As they mature this will help them to recognise and access support they need and to improve their well being. Having a diagnosis that makes sense to them will also protect them from coming to negative or wrong conclusions about some of their difficulties.

Why can’t children with PDA cope with standard teaching approaches?

It is not easy to define “standard” teaching approaches whether these are the approaches used in mainstream or special schools. Sometimes teaching approaches for typically developing children and particularly for many children on the autism spectrum are characterised by being clear and directive. For children and young people with PDA this can be perceived as too demanding which in turn raises their anxiety. Once anxiety is raised co-operation becomes considerably harder and sometimes impossible. The more a demand is insisted upon at this point, the more anxious and therefore demand avoidant the child can become. The key to minimising anxiety and maximising co-operation is to build positive relationships and to share more control with the child than is usual in typical school classrooms. Once anxiety is lowered, co-operation will increase and then the child can learn to accommodate increased demands being made of them.

What is the ideal educational environment for someone with PDA?

The ideal educational environment for a child or young person with PDA is not defined by its type or designation — for example a special or mainstream school — but is defined by its characteristics. An ideal educational placement is one that demonstrates the following characteristics:

• Genuine inclusion of the child with PDA in its learning community
• Flexible working arrangements
• Creative and individualised approaches
• Strong support from senior leadership
• A commitment to working in an open and supportive partnership with families
• Collaborative working with any other agencies involved

Is there a line between adapting to the needs of a child vs teaching coping mechanisms for managing anxieties?

As with any of us, the ideal situation blends the two. Whereas it is important to adapt to the needs of the child or young person, it is equally important to help them to develop strategies that will mean they are better able to cope with the rigours of life for themselves. They will need strategies to both help to avoid having their anxieties raised in the first place as well as strategies which can lower their anxieties once they have become heightened. When children are younger they need adults to play a lead role in this process. As they become young adults and beyond it is really important that they are able to manage their own stress and arousal levels. This is why areas such as self awareness and emotional well-being are such crucial aspects of learning and personal development for this group of youngsters.

Are there any particularly challenging times in a person with PDA’s life?

Like any other typically developing children and young people dealing with growing up puberty, teenage relationships, experiences of loss and transition all present challenges. If we take a moment to consider some of the skills that help most people to navigate these troubled eras they include self awareness, positive relationships, social responsibility, emotional regulation, problem solving and impulse control. These are all areas that we would not be surprised to find children and young people with PDA struggle with. This means that they face similar challenges but without the same range of strategies to cope with them. Some individuals with PDA block their emotions at difficult times, others act out their feelings and some can be over sensitive. Often there are issues in developing ways to deal with any strong emotions so episodes of life that are likely to bring intense emotion can be unsettling.

What are the greatest challenges facing parents and carers of children with PDA?

Parents and carers of children with PDA face a number of significant and complex challenges. Parents often report issues in accessing professional support regarding diagnosis; in finding and maintaining a suitable school placement where their child is understood and supported; in parenting children with PDA alongside other siblings whose needs may be quite different; in everyday activities such as shopping, holidays, travelling and family events; in attending appointments such as hospital, dentist, doctor, hairdresser with their child. Alongside stress felt by children and young people with PDA there is often additional stress experienced in their families. It must always be remembered that each family has its own character and is unique in its own strengths too.

What are the greatest challenges facing those with PDA themselves?

It is of course complicated to answer this question for such a diverse group of individuals. How would we answer the same question for those without PDA? However, children and young people who I have worked with have reported some common themes. These include some frustrations regarding feeling misunderstood and goal-blocked; some turbulence regarding maintaining friendships; some confusion regarding understanding emotions and self awareness; some inner conflict regarding wanting to do well yet struggling to reach their potential; plus raised anxiety.

What are the most useful forms of intervention for someone with PDA?

Our current understanding of effective interventions for children and young people with PDA are around approaches (see the guidelines on educational approaches). As with any other approach, these can have most long term impact if they are used early in a child’s development and can be sustained over time whilst the child matures and develops their own strategies too.

Read my interview with PDA activist Julia Daunt, or learn more about PDA here, here and here. Or visit the PDA Society website. I will add more interviews to Medium over the coming days. If you’d like to know more about what it’s like to live with PDA, Steph Curtis has 13 recent case studies posted on her blog.