difficulties and to get the best support for them. Some of you found that descriptions of PDA ‘made perfect sense’, that it described difficulties you were having while trying your best to parent your child. Many talked about a ‘penny dropping’ moment when reading about PDA. We listened and heard that your paths have been plagued with misunderstanding, confusion, controversy, ignorance, disbelief and even judgement coming from professionals. We were even told that some of you were refused help by services as PDA is not in the diagnostic classifications. Whatever name we might give to a child’s difficulties, it must never reduce their complexity into a meaningless label; a diagnosis should never put children into a box. On the contrary, it should help people understand their strengths and difficulties. This book aims to support a ‘needs-led’ individualised programme full of strategies and approaches that is shared by you, your family and friends, and all the professionals involved in the care of your child.
It is the parents of young people with PDA, with their immense tenacity and determination to help their children, who fight most for recognition among education, mental health and social care services. They do all this whilst also forming worldwide societies and online forums to share useful information and to support each other.
The authors of this book have pooled skills from a
range of professions: we come from mental health and
education backgrounds, with expertise
in communicating complicated
ideas in simple language and
pictures. Listening to young
people with these difficulties
and their parents inspired us to
write this book. Parents and other
professionals told us that our earlier
publication, My Autism Book: A Child’s Guide
to their Autism Spectrum Disorder, was useful
for the more ‘classic’ presentation of
Autism Spectrum Disorder (ASD) but
didn’t capture PDA characteristics. Parents wanted a book written for children and young people with the difficulties associated with PDA, a book that their child could own, to be used as a platform to explore their very unique set of challenges and difficulties within ASD and the concrete ways to manage their difficulties that work for them. We also listened to young people asking questions about the differences that they had noted when comparing themselves to others their age and felt that they didn’t ‘fit in with their peers’. Answering these questions in a way that makes sense to the young person can indeed be difficult. Our book wants to support the process of gradually creating self-awareness in the young person as it gently invites them to address these complicated but key questions in a clear and sensitive manner. It also aims to develop, in collaboration with your child, a repertoire of tailor-made problem-solving strategies and to provide a shared language that can be used by you and your child to communicate about PDA.
Although this process is a long one and very likely to be filled with plenty of bumps, the goal is clear: for your child to gain a better understanding of themselves, of their talents and limitations, as they mature into adulthood. In our experience, the benefits of this process will compensate for the challenges by a huge margin. Nothing could be more worthwhile!
Making better sense of themselves can help your child to improve their self-esteem as they realise that they are not alone in their struggles; they become aware of strengths that can then be fostered leading them to forge a more positive conception of themselves. It will also guide the search for better ways to manage their difficulties and problematic behaviours. In the long term, it will help them to make the right choices for the future. When you, or other trusted people involved in your child’s life, think they are ready for these conversations, we hope this book could be a good starting point, and a way to keep these important conversations going.
With every good wish on your journey,
Glòria and Tamar
What does PDA mean?
You may have noticed that there are some differences between you and others. You might feel, especially on those days when nothing goes your way, that you struggle with things that others seem to be able to do more easily. You may wonder why other kids around you seem to just get on with other people and other things.
A psychologist named Elizabeth Newson gave a name to describe the particular set of strengths and difficulties that young people like you have in common: Pathological Demand Avoidance, or PDA for short. Nowadays PDA is also referred to as Extreme Demand Avoidance.
We could explain it by saying that your
brain is wired in a different way from that
of most people. However, there are lots
of other people whose brain is wired
in a similar way to
yours. It is not
useful to compare
people’s brains as
everyone’s brain is
unique. Your brain
is not better or worse
than any other’s.
Why bother with this book?
Our brain will be with us for life: we can’t get a different brain from the one we were born with, so it’s wise for all of us to learn how to make the most of our own brain. A good way to do this is to learn as much as possible about yourself. This is the aim of this book: to help you to understand yourself better. Understanding how PDA affects you is an important part of this process.
We have given our best to this book to help you with such an important and worthy task. We would like you to think of our book as a tool. A tool to help make better sense of yourself so you can find ways to help yourself to pursue your dreams and ultimately lead a happy and wonderful life.
In the next pages, the book invites you to do lots of things: to find out about your strengths and difficulties, to look for ways to foster your strengths and to develop strategies to manage your difficulties in a way that works for you. It would be great if you decide to share your findings with the most important people in your life so you can get the help and support you need. It is
very important that the
grown-ups caring
for you know
how they can
make things
better for
you.
