I went to a conference on behavioral problems in children with epilepsy about a month ago. Put on by the National Centre for Young People with Epilepsy (www.youngepilepsy.org.uk), I was the lone parent at this one day event for doctors, specialist nurses, social workers and educators. I was darn lucky that I hold a degree in health or I would have been lost with the fifty cent words flying about.
Before the event, I was going over the program and noticed something I was not familiar with…Pathological Demand Avoidance Syndrome or PDA. I googled it and read enough to realize that many of the characteristics fit my daughter’s behavior patterns. So the next step for me is always to hop onto Amazon and see if I can find a book on a subject. I did…Understanding Pathological Demand Avoidance Syndrome in Children by Phil Christie, Margaret Duncan, Zara Healy and Ruth Fidler (for simplicities sake from now on I will simply say Christie et al).
To begin with what is PDA? First of all, it is another one of those ‘new’ discoveries of psychology. First documented over two decades ago by Elizabeth Newson at the University of Nottingham, it is considered a ‘pervasive developmental delay’ and is related to the autistic spectrum disorders (ASD), but varies significantly from most other syndromes on the spectrum. It is unlike other ASD the children with PDA appear to understand emotions and communication…to the point of being manipulative.
These children do not recognize that they are children. And while they may fully understand the societal rules of behavior, they have difficulty applying those standards to themselves. Their deep need to control situations and their environment is born out of the intense anxiety that they experience when demands are placed upon them…even normal every day demands of life and school.
For a scientific work, I found this book extremely readable. The advice on how to best manage these disruptive behaviors was practical and thorough. Suggestions such as using games or challenges instead of demands have made our home an easier place to live. Also, the idea of giving children more choice/control while it may go against much of the traditional parenting advice works very well for these children; something I had discovered naturally.
For instance, in our home taking our medicines each night is fraught with anxiety, resulting in battles several times each week. After reading this book, I adopted a different approach. Now instead of saying, ‘it is time to take your medicine,’ I prepare the medicines and bring them into the room. I show them to Emily and ask ‘when would you like to take your medicine.’ She usually replies, ‘after this show’ or something specific event. Does it work all the time? No, sometimes she will try to get out of what she said. But instead of fighting, I offer compromises or remind her of the importance of keeping her promises, which usually get the desired result without a war of wills ensuing.
Another great point with this book was the inclusion of homeschooling as an option in the chapter on education. I will say that the initial portrayal of home education as a ‘last resort’ was disheartening but at least it was included along with this…”It is the flexibility of educating at home which may suit a child or young person with PDA, who may not be able to follow the rigid approach and curriculum which is in place in many mainstream environments.”
I should also say that this book is fairly pessimistic about the long term outcomes for PDA. But this is perhaps unfair because they base these assumptions on a very small sample of children that Dr. Newson followed into adulthood (less than four dozen). Many of these young people ended up dropping out of education, unemployed and often in trouble with the law. But I would also point out that because little was known about this syndrome when these children were diagnosed, they did not have benefit of many of the interventions recommended in the text.
In the end, this is a book and a diagnosis that I will keep on the shelf to refer to from time to time. I hate to be so negative, but I am left wondering what the value of this label is? Since many of these children already have an array of alphabet soups such as ADHD and oppositional deviant, why would one more matter? Especially given the lack of acceptance of this ‘new syndrome’ among the scientific community. So while I cling tightly to the new skills of offering choices and using games/challenges rather than demands, the term itself holds little cache for me.
Overall, if you feel that your child has strong elements of autism, but just does not fit labels like Asperger’s, if others view your child as demanding, if every single demand you make of your child can easily escalate to a battle of wills, then I think you can gain a lot from reading Understanding Pathological Demand Avoidance by Christie et al.
But don’t take it as gospel. There is much these experts don’t know about this syndrome and especially about your child. Once upon a time, in another life, long long ago, I knew this preacher who said that for some things/ideas you needed to spit and chew. Chew and digest the parts that you can use and spit out the rest. That would be my advice on this book…and this syndrome.
On Friday, I will have a guest blogger. Sharon has been ‘unschooling’ her son with autism for six years. Her response to an inquiry on one of the online groups that I follow was so inspiring that I wanted to share it with you. Then next Friday, we take a more traditional look at approaches to managing ADHD with Dr. Sabrina Dosani’s Calm Your Hyperactive Child.
3 thoughts on “Understanding Pathological Demand Avoidance by Christie”
Hi, the benefit of the diagnosis lies in identifying that the strategies that work and are usually helpful for those with ASD/ Aspergers etc are unlikely to work and may be counterproductive. The PDA ‘label’ allows you or another professional to learn about strategies which are more successful in helping individuals to comply to everyday demands (though of course if you read the book you will see that no strategy always works and thats why parents and professionals have to be flexible in their approach, and armed with many different strategies.
I personally feel that the strategies suggested for PDA may be useful for anyone who has a child who is demand avoidant and this book is quite a good summary. There is also a useful summary on the National Autistic Society website, with links to further information. The PDA contact forum also denotes many anxious parents whose children sometimes have another label, or often no label other than ‘naughty’ but who have identified strongly with the diagnostic criteria and are at last finding support from other parents in trying to support their children and hold their family together.
Margaret Duncan (one of the authors of the book) homeschooled her child for a year and she often supports parents in finding information and advice about homeschooling if this is something a parent is considering. Many other parents of children with this diagnosis have also homeschooled/ are currently home schooling by the way.
I haven’t homeschooled my children, who both have additional needs (one PDA, one diagnosed ASD) but it isnt something I would rule out.
I think it is fabulous that you are so passionate about homeschooling and if you have any advice/ tips to share please let me know, or post on the PDA contact group forum as other parents would definetely find this useful.
I am familiar with both of those forums although I have joined neither.
One thing that I would like to make clear is that this blog is written exclusively from a HOMESCHOOL perspective. Were my daughter still in the educational system, my views on diagnosis would be markedly different. When dealing with the educational system you need every weapon/label you can get to ensure that your child gets the services that s/he requires. Your argument for…other professionals…may be valid, but in a homeschool environment it is usually moot.
Homeschoolers are a breed apart. We focus upon the child and learning as you say the techniques that work and do not work for the individual. It is an instinctual thing. We do not need labels to try out new tecchniques…and in fact if you wait around for the labels, you and your child could be in far worse condition. We have been waiting for eight months just to get a diagnosis of ADHD and sensory processing. The system is too slow to offer adequate assistance to families who have pursued the option of homeschooling and are with their special needs children 24/7.
For us, we become parent, teacher, therapist and diagnostician. It is about devouring every book we can get our hands on…not for labels but for ideas and techniques. It is about keeping that open mind and picking up a piece here and there to craft a loving quilt that will cover our child. The piece I got from this book was…ask/trick/cajole but do NOT demand. When combined with the Collaborative Problem Solving advocated by Dr. Ross Green in his book The Explosive Child, things are 1000% better for my child…without a label. Likewise, I have crafted a sensory smart house with a quiet corner, trampoline, chewy sticks and other things that calm and soothe my child. All techniques that I found in books and acted upon myself without an official diagnosis of anything.
Thank you for the offer to join the PDA forum. I will keep an eye out for any homeschool information, but I am already a member of several forums on homeschooling, special needs and my daughter’s medical diagnosis of epilepsy. You or anyone else may of course contact me if they need more information about homeschooling specifically or wish to follow the FragileX.org lead and offer information and links specific to the subject to its members.
One thing I would suggest is that your webpage be updated to address parents rather than teachers. The way that it reads now a parent must wad through a great deal of irrelevant information geared towards working within a school environment to find those tecchniques. Specifically I am talking about the Guidelines page here. But I just noted that other than a link to your forum there is not any guidance directed speciffically to parents.
Good luck with your work,
Terri and Emily O’Neale
Great post. Thank you. I am only just discovering that PDA fits my daughters behavior to a T. For a while there I thought I was going mad trying to figure out just why her behaviors at times could be so bad. People who have only ever seen her in a good light have such a hard time believing that she can ‘meltdown’ so quickly and over such simple things. I think others have assumed that I must be parenting wrong. So good to know that there may just be another answer. Once again thank you so much for this post.