A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools

The number of children identified with autism has more than doubled over the last decade. School-based professionals are now asked to participate in the screening, assessment, and educational planning for children and youth on the spectrum more than at any other time in the recent past. Moreover, the call for greater use of evidence-based practice has increased demands that school personnel be prepared to recognize the presence of risk factors, engage in case finding, and be knowledgeable about “best practice” guidelines in assessment and intervention for autism spectrum disorder (ASD). Continue reading

Teaser Tuesday-Social Interaction in Young Children with Autism Spectrum Disorder

The Early Identification of Autism Spectrum Disorders by Patricia O’Brien Towle is a unique visual guide aimed to equip readers with the skills to recognize autism spectrum disorders (ASD) in children as young as 15-18 months old. It provides a systematic framework for understanding theTowle_Early-Identific_978-1-84905-329-7_colourjpg-web complex nature of ASD. From social interaction to communication to restricted and repetitive behaviors, each chapter focuses on key symptoms and uses photographs to illustrate and enhance understanding of presenting or absent behaviors. It is written in an accessible style and covers all of the core aspects of ASD, giving readers everything they need to be able to successfully identify the behavioral indicators of autism.

Chapter 4-Social Interaction in Young Children with Autism Spectrum Disorder

Difference and delay in social development is at the absolute core of ASD. Some children show normal first-year social development and then start
to lose those skills in the second year, while other children evidence delays right from the start. The behaviors to be described and illustrated in this chapter fall into the following three general clusters:

  •  Social engagement and interest: How does the child show that he is interested in others and ready to be engaged? To this end, where does the child place himself physically so that he has the opportunity to get involved with others? How does the child use eye contact to signal interest in engagement, and monitor the faces of others to extract information about how the interaction may go? How does the child get social interaction going with others, and how does he respond when others initiate social interaction with him?
  • Emotional signaling: How does a child exchange purely emotional information with others, and signal her internal state?
  • Capacity for interaction: How easily does the child fall into a give-and take pattern across a variety of circumstances, from predictable and scripted routines to a free-flowing, reciprocal social interchange? Can he sustain an interaction once it is started?

Download the chapter 4 extract here.

Patricia O’Brien Towle, Ph.D., has 30 years’ experience with early childhood developmental disabilities and Autism Spectrum Disorders. She is a clinical child psychologist at the Westchester Institute for Human Development and assistant professor of psychiatry, pediatrics and public health at the New York Medical College. In addition to her extensive clinical experience, Dr. Towle carries out research on the prevalence and developmental course of ASD, supervises psychology interns and post-doctoral fellows, and gives presentations to professionals and parents nationally. She lives in Westchester County, New York.

Teaser Tuesday—Downloadable Activities for Exploring Positive Feelings (Happiness)

Exploring Feelings for Young Children with High-Functioning Autism or Asperger’s Disorder is a practical manual for professionals that provides a set of simple strategies to help children with high-functioning autism or Asperger’s syndrome who suffer from mood difficulties to decrease negative feelings and increase positive feelings in daily life.

The primary goal for each of the mini activities included below is to introduce feelings of happiness in children with autism spectrum disorders. Young children with autism often have particular difficulty in understanding and controlling their emotions.

How the activities work to teach emotion:

Cool Down: relaxes the child and prepares the group for understanding the complex emotion

Tell the children the rules of the group and explain the schedule. The rules will involve the following:

  • sit (in your seats or carpet squares)
  • look (at the speaker)
  • listen (to the speaker)

Welcome: introduces the child to the activity and sets the tone of each session

Ask each child to tell the group about the following things:

  • name
  • age
  • siblings

Singing: demonstrates to the child why it is important to understand and learn how to manage feelings

Get some ideas from the children, but guide them towards the following three reasons:

  • to feel better
  • to think better
  • to stay out of trouble

Story/Discussion: shows the children how they feel when they are experiencing a happy emotion

Read a story about happy feelings, and present each of the following questions on a card with a visual aid clue to the answer:

  • When do you feel very happy?
  • How do we know when we are happy?
  • How does your face look? (look in handheld mirror)

This dynamic and effective resource is for all professionals working with young children with autism spectrum disorders including teachers, guidance counselors, psychologists, speech therapists, behavioral therapists, occupational therapists, and social workers.

Download sample activities here

Exploring Feelings for Young Children with High-Functioning Autism or Asperger’s Disorder: The STAMP Treatment Manual by Angela Scarpa, Anthony Wells and Tony Attwood is published by Jessica Kingsley Publishers.

JKP Author Elle Olivia Johnson Shares Tips for Parents on Understanding Applied Behavior Analysis (ABA)

Specialized Academic Instruction Teacher (SAI) Elle Olivia Johnson shares some tips for parents from her NEW book, The Parent’s Guide to In-Home ABA Programs: Frequently Asked Questions about Applied Behavior Analysis for your Child with Autism, on navigating the confusing language of Applied Behavior Analysis (ABA).

ABA.  DTT.  Maintenance.  Reinforcers.  Data.  Prompting.  A-B-C Data. 

Whoa.  Let’s slow down.  You CAN do this!

Learning that your child has, or is considered at-risk for an autism spectrum disorder, can be an emotionally draining, confusing, and stressful experience. Along with these challenges faced by parents and families, there are languages to master: the languages of Applied Behavior Analysis (ABA), in-home therapy, and behavior. You never thought you’d need these skills, right? Well, life is full of surprises, and the surprise that you and your family received is that you will be learning some unique and important information. Rather than getting caught up in the amount of new stuff you’re being asked to learn, keep it simple by focusing on learning a little about each part.

1.  Learning about applied behavior analysis and what an in-home ABA therapy session looks like, includes, and what is expected of you.
In-home ABA program supervisors and therapists will work closely with you to teach you about ABA and how the techniques in the ABA “toolbox” can help your child and your family. You will learn how ABA is used to teach your child, how you can use the same teaching techniques in your day-to-day lives, and how progress is assessed and documented. You will also receive information about the purpose of each task your child is being asked to do, why these specific tasks have been chosen, and how each task leads to new skills. View this portion of your ABA education a little like looking at a map. You can choose to look at a map from space, seeing just a blur of each area. Click a little closer, and you can see states and lakes. Move in closer still, and you will see individual street names and landmarks. Your ABA learning will feel a little like this. A big blur in the beginning, but clarity as you become more familiar.

2.  Learning the lingo!  What do all those acronyms mean?
Like I said….whoa. ABA lingo is the shorthand educators and ABA professionals use to keep notes and instructions simple. I know that if I jumped into the role of a nurse, I would have absolutely no idea what the medical notes and codes meant. It’s the same feeling you have as you are learning about ABA. Don’t worry, there will not be a test on this, but you should be familiar with the specific abbreviations your ABA provider uses, especially if you want to learn to take data yourself. It’s ok to use a cheat sheet….but soon, you won’t need it. You will become as familiar with ABA terminology as you are with the acronyms you use in your work life.

3.  Looking forward
Life sometimes brings you to places you never, ever dreamed you would travel.  You are there for a reason, and when things seem overwhelming, confusing, or impossible, remember that you are the absolute best person, in the entire world, to help your child. They cannot do it without you, the ABA provider cannot do it without you, and the in-home ABA team NEEDS you. Learn as much as you can, ask millions of questions, and if you feel you want to go further in your learning about ABA, ABA therapy, or behavior, look into expanding your education. Keep in mind that as an advocate for your child, it is also your job to carefully evaluate claims about therapies and cures for autism. Stick to peer-reviewed, research-based, reputable research claims. Anecdotal evidence is not equivalent to well-conducted research.

Finally, take a deep breath, smile, and enjoy your child. Things are going to be fine. This whole confusing ABA journey is about to get a lot simpler.

Podcast: Dr. Petra Kern on how music therapy in early childhood can help children with ASD’s

Earlier this year, the Music Therapy Research Blog interviewed Petra Kern on her work concerning early childhood music therapy with children on the autism spectrum. They published their interview as a podcast, which you can listen to here:

Music Therapy Research Blog interviews Dr. Petra Kern

Petra Kern is co-author with Marcia Humpal of the forthcoming JKP title, Early Childhood Music Therapy and Autism Spectrum Disorders. Petra is owner of Music Therapy Consulting, and  is recipient of the AMTA 2008 Research/Publications Award, editor of imagine, and author of numerous publications. She serves as the immediate Past President of the World Federation of Music Therapy (WFMT), on various editorial boards, and is a frequent international speaker and guest University lecturer.

How to use Dramatic Play to teach kids to ‘learn by doing’ – An interview with Carol Woodard and Carri Milch

Encouraging imaginative play in the classroom is an effective way to teach young children how to think creatively and interact socially – vital parts of their cognitive, social, and emotional development.

In this interview, educators Carol Woodard and Carri Milch introduce their new book, Make-Believe Play and Story-Based Drama in Early Childhood, which presents engaging and practical ways to use drama to enable young children to develop creative thinking and literacy skills while planning together, making decisions, giving and receiving feedback and working toward a common goal. Download a sample activity »

What made you go into education, and how did the book come about?

We have always enjoyed working with young children and are continually intrigued by their development and innovative techniques that support learning. Over the years, we have gained experience by teaching in public, private, and demonstration schools, at the college level here and overseas, and by writing and consulting for schools, agencies, and business. More recently, however, we have been disturbed by the teacher directed instruction and scripted materials being introduced in early childhood classrooms, and decided to try to do something about it by focusing on pretend play which does not always receive the attention it deserves.

Why is engaging children in drama and pretend play such an effective way of supporting their development?

Pretending has an important role in early childhood development. Through make-believe play and story-dramatization, children expand their thinking by using imagination to connect reality (what is) with a variety of stimulating alternate possibilities (what could be). In this process, the child develops cognitively, socially, emotionally, and physically especially when interacting with more knowledgeable adults and peers in a safe and supportive environment. The young child is also naturally drawn to pretending and finds it an engaging and delightful adventure.

What skills does dramatic play help children acquire?

Dramatic play is a type of pretending in which young children assume pretend roles within a theme like the grocery store, and improvise and control their own actions and conversations. Such play provides countless opportunities to develop skills such as critical thinking, prediction, problem-solving, self-discipline, cooperation, self-confidence, and empathy towards others, while also advancing language and literacy.

How does the book reflect your general philosophy about education?

We firmly believe that young children learn by doing and being involved in actual experiences which they help design, develop, and guide, and parents need to understand how children learn and be encouraged to become partners in the undertaking. We also feel that learning should be an interesting, challenging, and satisfying experience that contributes to a child’s overall development and a teacher’s professional fulfillment.

Can you talk about the storybook component in the book and why was it important to include this?

Dramatizing a story is still another type of pretending in which young children need to thoroughly know a story in order to act it out. For this reason, we suggest a three step approach to story learning which includes picture reading a storybook with the children. Realizing that teachers can be hesitant about beginning to use story dramatization, we wanted to provide a complete package which would introduce dramatizing and provide a storybook especially designed for this purpose. Our storybook is quite lovely and well suited to dramatization as it combines action and suspense with simple, colorful illustrations which are easy to follow and later improvise. Such a package offers children and teachers the ease and confidence to become involved in this rewarding experience.

What do you hope teachers and others working with young children will take away from this book?

We hope the book will enable teachers to skillfully integrate dramatic play, everyday drama activities, and story dramatization in their programs and help children learn by doing while building a sound foundation for future success in school.

Copyright © Jessica Kingsley Publishers 2012.

How Positive Psychology can help children be happy, confident and successful – An Interview with Jeni Hooper

Photo: JKP author Jeni HooperJeni Hooper is a Child Psychologist and Parent Coach who is based in Winchester, England. She has over 30 years’ experience working with children in both public and independent settings. She now specialises in applying positive psychology to promoting children’s psychological wellbeing as a trainer, coach and consultant.

In this interview, Jeni talks about her new book, What Children Need to be Happy, Confident and Successful, a practical model based on Positive Psychology principles that can help parents and professionals to support children in facing the challenges of real life.

Please tell us a little about you and how you came to work in child psychology and parent coaching.

I discovered psychology in my teens and was immediately fascinated by what we could learn about ourselves and creating our best life. I had a very happy childhood but knew a lot of children who didn’t. I loved school and did well there but I could see how hard it was for others. I remember a young woman with learning difficulties who lived nearby. She couldn’t talk but liked to go out for walks by herself with her basket of treasures. She was a child in a woman’s body, and I was horrified when children teased her. They tried to take her basket from her and she would become very distressed. I tried hard to imagine what it would be like to live her life instead of mine. I knew her family received very little help and just did the best that they could. I grew up knowing I wanted to make life better for children but at first I didn’t know how exactly. I suppose my motivation was both compassion for others and gratitude for my own good fortune.

I studied psychology at university and then went into teaching, first in primary schools and then in special education, before training as an Educational Psychologist. In Educational Psychology, I could support parents and schools to help those with the greatest needs. While this is vitally important, it helps only those in greatest need. In recent years, I have combined working in the public sector with setting up an independent practice so that I could share what psychology has to offer with more families. I think it is important to support all adults, both parents and professionals, to deal with children’s difficulties before they reach crisis level. My book is a means to share what I have discovered with a wider audience.

Can you explain what positive psychology is for the uninitiated?

Positive Psychology is the study of optimal wellbeing: what we need to be our best selves. For the past 100 years, psychology has focused on helping those in most need by treating mental health needs and learning difficulties. By focusing on this specialised area, psychology has become distanced from the lives of most people. In contrast, Positive Psychology reaches out to a wider audience. It is relatively new, but has taken off like a rocket, and now has a substantial evidence base of what helps people to flourish.

How do you find it helps the children you work with?

Getting things right from the beginning is the best way to create a good life for children. Wellbeing is about having the skills that you need for day-to-day life. Children need to learn how to manage their thoughts, feelings and behaviour so that they can make good choices. This self-determination is satisfying and boosts confidence.

Professionals and parents want the best for children and need to know how to guide them through childhood. Positive Psychology provides the evidence on which to base decisions. For example, we know that optimism is invaluable to mental health because it encourages people to be hopeful and take good care of themselves. It helps people stave off depression by reframing challenging experiences and it increases people’s overall happiness. We know that happy people are more successful at school, in work and in their relationships. So one of the pillars of positive psychology is to teach optimism.

Your new book is based on your own ‘Flourishing Programme’. Can you tell us what this is, and why you have written the book?

The Flourishing Programme provides a comprehensive guide to nurturing wellbeing. There are 5 core areas of wellbeing:

  • Personal strengths: the skills and abilities important to us which we choose to use when we can. These strengths are satisfying and also help us to be successful.
  • Emotional Wellbeing: keeps us calm and stable and able to get on with life. This depends on our ability to understand and manage our emotions so that we maintain a positive mindset.
  • Positive Communication: the skills to connect with others and nurture happy, healthy relationships.
  • Learning Strengths: to grow and develop, a child needs learning habits which motivate and help get results.
  • Resilience: is the set of problem-solving abilities which help us deal with challenges.

The Flourishing Programme provides a framework to assess a child’s wellbeing in each of the 5 core areas, and describes activities which will encourage progress and growth. There are downloadable questionnaires which can be used to assess wellbeing. The programme is designed to be personalised to reflect a child’s strengths and interests as well as address their current needs.

Every child is unique and their personality and strengths will determine the direction they want to go. One of my favourite sayings is: “The child provides the power while the adults do the steering.” When adults try to control everything they are likely to meet resistance; but equally when a child is left to explore and experiment, they risk confusion and failure. The Flourishing Programme suggests that childhood is a shared journey which works best when adults understand the unique strengths of the child. The book offers both parents and professionals a useful map to identify those strengths and nurture progress.

For an overview of The Flourishing Programme, please visit my blog.

With a positive psychology approach, is there a danger in focusing too much on the positive and ignoring the negative?

Positive Psychology is a memorable name, more so than “wellbeing psychology” would have been. But despite the name, Positive Psychology is not a one-sided approach. In the early days the media focused on happiness, but more recently the subject of resilience and bouncing back from set backs has been better understood. Positive Psychology is definitely not a happy, clappy approach. It faces up to the challenges of real life: not only how you get on track to make a good start in life, but also how you can manage challenges if something awful happens. Professor Martin Seligman, for example, is working with the U.S. military to monitor the wellbeing of soldiers and their families and to develop both self-help strategies and early support.

What are your thoughts on proposed Happiness Index – a measure of the UK’s happiness – and campaigns such as Action for Happiness?

The Happinex Index is a welcome concept. It reminds politicians to judge their effectiveness not just on economic criteria but by the impact policies have on people’s lives. This is harder than measuring growth in economics but equally important. I hope the Office for National Statistics will refine their measures to get past the trivialising headlines I saw recently which told us that the happiest people in the UK are over 65 with children and living in Northern Ireland. It is not a competition!

Action for Happiness is a great resource and I would thoroughly recommend people to explore the website: www.actionforhappiness.org. It reminds people what works for individual wellbeing, but equally how important relationships are essential to a happy and satisfying life.


Copyright © Jessica Kingsley Publishers 2012.

Responding to young people who self-harm with concern, care and compassion – An Interview with Steven Walker

Steven Walker is Head of Child and Adolescent Mental Health at Anglia Ruskin University, UK. He is a registered social worker and psychotherapist and has worked in social care for over 30 years, specialising in child protection and child and adolescent mental health.

In this frank interview, Steven discusses the growing problem of self-harm amongst young people; how stereotypes and the current cuts in social care spending are affecting professionals’ ability to tackle this problem; and how his new book, Responding to Self-Harm in Children and Adolescents: A Professional’s Guide to Identification, Intervention and Support, can help.

You have written many popular books relating to child and adolescent mental health, including The Social Worker’s Guide to Child and Adolescent Mental Health. Where you find inspiration and motivation to write?

My own teenage years were not always happy times and I have dedicated most of my professional life to helping and supporting young people with emotional or mental health difficulties. Fortunately, I enjoy research and writing so I can share my ideas, knowledge and skills with staff who want to make a positive difference to the well-being of young people, who are so often misunderstood and demonised by adult society. There is still considerable prejudice against young people and so little help and support that I don’t find it difficult to get motivated or inspired to carry on doing what I do. Young people are our future, adults have created the world in which they witness huge inequality and injustice, so we owe it to them to provide whatever support they need to cope.

Can you tell us a bit about your background, and how this new book came about?

I’ve worked and taught in child and adolescent mental health for about 20 years. I came across mental health problems in young people in my first social work job in Tower Hamlets in 1985. It’s in every aspect of social work in one form or another but it gets labelled as youth crime, school problems, anti-social behaviour and binge drinking. I was inspired by The Maudsley Hospital Children’s Department where I was placed as a student social worker during my training. Young Minds is another source of inspiration –  they do a lot with precious little resources to champion young people’s mental health.

I feel that the problem of self-harm and suicide are still difficult areas in which to work, and very stigmatising for young people and their families who are affected. I hope the book is accessible to a range of people who will find crucial advice on how to identify, assess, manage, treat and support the recovery of young people who are sufffering. Probably the most important thing readers will hopefully take away from the book is a sense of optimism, demystification of self-harm and suicide, and practical guidance.

It is often claimed that there is a shortage of training for health and social care workers in relation to self-harm. Do you agree and, if so, why do you think this is?

Lack of in-depth training is one issue that prevents staff from being able to understand, manage and support a young person who self-harms or exhibits suicidal behaviour. The two issues are not the same and this is partly why there is confusion among professional staff, and why families are reluctant to involve health and social care services. Recent cuts to Child and Adolescent Mental Health Services (CAMHS) services in terms of staff and range of support will make this situation worse. There is no national training for staff who are likely to come across a young person who self-harms, such as teachers, social workers and those working in Youth Services or places which are accessible to young people seeking help outside statutory Health and Social Care systems. Young people’s mental health and emotional well-being has never been a priority for any government, but currently training budget cuts are reducing even further the chances for staff to improve knowledge and skills in this area.

It is reported that self-harm is a growing problem in children and young people. Why this might be?

The problem with self-harm and suicidal behaviour is that it is easily hidden, carries considerable stigma and is misunderstood by many professional staff. Evidence suggests that it is increasing as a generation of young people are exposed to a harsh economic and social climate, competition for higher education and skills training, and increases in poverty, unemployment and parents under considerable stress. Young people find ways of coping in these circumstances and self-harm is a strategy many are using to cope with feelings of anger, despair and hopelessness.

Are there certain social profiles of children and young people who are most at risk of self-harm?

There is no typical profile of a young person who self-harms; each individual person has a unique history of development, resilience, family dynamics, vulnerability and socio-economic factors which together can – with a significant trigger such as a bereavement, parental divorce, or sexual abuse – create the conditions for self-harm to begin.

What are the most common misunderstandings between young people who self-harm and the professionals who work with them?

Nurses who encounter self-harm in emergency units can sometimes respond in a way that comes across as punitive, unsympathetic and judgmental. This is very unhelpful to a young person in crisis. It’s because they see self-harm or suicide attempts as self-inflicted injury, whereas their training is mostly about disease, biology and surgery. They are not properly trained or supported by managers in this area and they are always overstretched, so when someone with self-injury requires help they feel angry. This attitude harms the young person, hinders their recovery and prevents the young person seeking support to stop self-harming in future because they fear such punitive/ignorant attitudes. These attitudes are not restricted to Nurses but felt by others working in Health, Social Care, Criminal Justice, and Education contexts. Any person encountering a self-harming young person needs to show concern, care, and compassion and this book will help them start by understanding the problem and what actually helps.

You are Lecturer in Child and Adolescent Mental Health at Anglia Ruskin University. Can you tell us about your role, and the course that you run? What are you working on now?

I designed, developed and delivered one of the very few CAMHS training courses for multi-disciplinary students in the UK from Health, Social Work and Education contexts, whose employers recognised the need for specialist training in this area. The course won a prestigious National Training Accolade in 2004 for ‘most innovative multi-disciplinary training’ and was approved as a post-qualifying award by the General Social Care Council. The innovation was the multi-professional nature of the student intake. We recruited Psychologists, Psychiatrists, GP’s, Social Workers, School Nurses, Health Visitors, Teaching Assistants, Housing Department staff, Youth Workers, CAMHS and Youth Offending Team staff.

Government cuts have dealt a blow to the course, which is no longer viable due to low numbers of students sponsored by their employers. I’ve just completed a major research project on Cyber-Bullying which is another major threat to young people’s mental health and is more harmful than ‘traditional’ bullying. I’m currently working on a research bid to examine the problem of young people who run away from residential care and their mental health needs. And I have just been commissioned to edit a book on the Mental Health system and how it fails those who are suffering.

Copyright © Jessica Kingsley Publishers 2012.

Using occupational therapy techniques to help your child with autism live life to the full – An interview with Debra Jacobs and Dion Betts

Many of you who are parents or carers of young people with Autism will be familiar with the important work of Occupational Therapists: helping the special kids in your lives accomplish the daily activities and tasks – big and small – that enable them to live healthy, happy, full lives.

This month, JKP is excited to present the new book, Everyday Activities to Help Your Young Child with Autism Live Life to the Full, which features simple ideas, activities and exercises based on Occupational Therapy techniques to help improve a child’s sense of body awareness, coordination and motor skills, and address key daily tasks such as eating meals and healthy sleep.

In this interview, authors Debra Jacobs and Dion Betts introduce the book and share some tips to encourage children with Autism to participate in “activities of daily living”.

Tell us about yourselves. What made you decide to write this book?

Dion: I am a school district superintendent in the U.S., and was formerly a special education teacher and manager of many education programs, including those with students with disabilities. Two of my oldest of five children have Asperger Syndrome. My eldest was diagnosed in the early 1990’s when there was very little written about supporting individuals with this syndrome. Over the years I noted the value that Occupational Therapy methods had on my children and those in my schools. I also noted that many of these methods can be used successfully by parents, carers, and other professionals in helping children to develop. Debra contacted me after a presentation I did with my oldest son regarding issues and solutions for individuals with Asperger Syndrome, as they relate to school, home, and the community.

Debra: I have been an Occupational Therapist for almost 30 years. My passion is to provide individuals with simple things they could do at home to improve the quality of their life. I work in a public school district in the U.S. and have had an increasing number of students with Autism on my case load. When I met Dion, we decided a book could reach more people with these helpful ideas.

What is Occupational Therapy?

Debra: Occupational Therapy (OT) is a healthcare profession. There are many specialty areas within this field, but the overall intention of Occupational Therapy is to use activities that are interesting to our clients to facilitate an increased quality of life and help them to fulfil their roles, successfully and independently as possible. The activities vary according to the client. So, for example, the main role of a child might be student and friend, and their primary “occupation” might be play. When children are not playing due to physical, sensory or other challenges, the occupational therapist can provide directed activities to naturally improve those skills.

Is specialist help or training needed to carry out the activities in the book?

Debra: This book was written so that no special training is needed to carry out the activities. Special attention was given to the use of ordinary everyday items that may be found easily in the community or in most homes. We want this book to be meaningful and useful to as many people as possible.

Can you give some examples of the activities in the section on improving coordination, body awareness and sensory integration, and how they work?

Debra: One of the best activities to improve these characteristics is swinging (page 72). The simple forward and backward movement is both calming and organizing to the nervous system. The method presented in this book moves from almost total support of the child as he swings towards independence. This book is structured in a developmental progression within each activity. The parent or carer can move from providing a great deal of support to decreasing that support as the child increases his skill level and gains independence.

What kind of daily tasks do children with Autism tend to struggle with?

Debra: One of the most common daily tasks that present a challenge is dressing (page 88). One way to make this daily necessity easier is to pay attention to the feel of the clothing the child is being asked to wear. If the fabric is stiff, or has a strong fragrance, these may present a problem for the child. Understanding the experience of the child is one of the first steps to creating a comfortable environment where he can grow. Grooming tasks also frequently present difficulties. Simply using liquid soap rather than bar soap decreases the amount of time needed to bathe.

The activities in the book are designed to form party of daily routines. How can parents prevent their children from feeling like these daily tasks are chores?

Debra: It is important for children to participate in “activities of daily living” which are essential for good health. The more he is involved in the process and has some sense of control, the less he will see it as a chore and the more he will be willing to participate. After some trial and error, parents learn the child’s specific preferences. This may be a certain soap or towel. When approaching these activities, parents need to ask themselves what they are attempting to accomplish. For example, if the goal is for the child to be clean, then does it really matter if bath time is 7PM or 3PM, as long as the time fits with the flow of the family?

Will occupational therapists also find the book useful?

Debra: I have had advanced training in the field of Autism, which is a new and growing area in Occupational Therapy. There are many ideas and activities in this book that I have developed as a result of my experience as a practicing therapist, as well as my studies and research. Occupational therapists can benefit from that wealth of knowledge through this book. They will recognize some of the methods here, and learn new ideas for approaching common challenges. I have used the Occupational Therapy techniques of grading and adapting activities that my fellow therapists will appreciate. Anyone who has any contact with young children with an Autism Spectrum Disorder will find something useful in this book that they can use from the moment it is opened.

Copyright © Jessica Kingsley Publishers 2011.

Misunderstood “Misbehaviour” – Understanding Pathological Demand Avoidance (PDA) Syndrome in Children

Pathological Demand Avoidance Syndrome (PDA) is a developmental disorder that is being increasingly recognised as part of the autism spectrum. The main characteristic is a continued resistance to the ordinary demands of life through strategies of social manipulation, which originates from an anxiety-driven need to be in control.

In this interview, Phil Christie, Margaret Duncan, Ruth Fidler and Zara Healy – the authors of Understanding Pathological Demand Avoidance Syndrome in Children – talk about this diagnostic profile from their varied perspectives as parents of and professionals working with children with PDA.

Briefly, can you describe PDA? What differentiates it from autism/Asperger’s syndrome, and why has it come to light only recently?

Phil: Pathological Demand Avoidance syndrome (PDA) was first described during the 1980’s by Professor Elizabeth Newson. The initial descriptions were based on a gradually developing understanding of a group of children who were amongst those referred for diagnostic assessment at the Child Development Research Unit at Nottingham University. Most of the children seen for assessment were very complex in their development and many reminded the referring professionals of children with autism or Asperger’s syndrome. At the same time, though, they were often seen as not being typical of either of these diagnostic profiles.

Over time, Newson and her team began to notice that while these children weren’t fully typical of autism or Asperger’s syndrome they were typical of each other in some very important ways. The central feature that was characteristic of all the children was ‘an obsessional avoidance of the ordinary demands of everyday life’. This was combined with sufficient social understanding and sociability to enable the child to be ‘socially manipulative’ in their avoidance. It was this level of social understanding, along with a capacity for imaginative play, which most strongly countered a diagnosis of autism.

The publications on PDA have attracted great deal of interest and a degree of controversy. The overriding reason for this interest has been the strong sense of recognition expressed by both parents and professionals of the behavioural profile described. The controversy that exists has been about whether PDA does exist as a separate syndrome within the pervasive developmental disorders or whether the behaviours described are part of the autism spectrum. The first peer reviewed journal article on PDA was published in 2003 and since that time the recognition and interest has steadily grown. With recent changes in definition and terminology PDA is now increasingly being recognised as being part of the autism spectrum.

Alongside this growing recognition and need to understand the diagnostic profile, there has been the appreciation that children with this condition seem to require a different emphasis in the way in which they are managed and the approach they respond to. Many educational professionals, often very experienced in working with children with ASD, contact us because the sort of approaches and methods that they have found so successful with other children on the spectrum have not been so effective with this particular individual.

At the Elizabeth Newson Centre we are contacted by several parents each week who have come across information about PDA and are wanting advice and support about diagnosis, management and education. Many parents tell us that they have struggled to find a diagnosis that ‘makes sense’ of their child’s development and behaviour. Often they have read the descriptions of PDA and comment on how it is ‘like reading my child’s life story’. These parents don’t just want a label for their child – although they are often criticised for just that – but they want a way of understanding him or her. With understanding, they can then move forward knowing the best ways in which to manage their children, encourage them to be less anxious and reduce some of the outbursts that are having an impact on all of the family. As one parent wrote to us, only days after coming for an assessment, ‘…we are already experiencing a better home life…it seems that simply by having a better understanding of her difficulties there is a tangible drop in tension surrounding our interactions’.

This is the first book on PDA that has been written for parents, teachers, and other front-line professionals – how did it come together?

Phil: For many years we have been able to refer both parents and professionals to the information on our publications list – mainly the original writings of Elizabeth Newson and the more recent papers written by staff at the centre or Sutherland House School. These have all been welcomed and helpful but we wanted to bring everything together and to expand what has been written, particularly drawing on the very practical experience of clinicians, teachers and parents. We hope the book will give readers a useful summary of our understanding of PDA as it is, lots of practical guidelines and strategies and also give some pointers for future research. We also hope that it will stimulate constructive debate, progress in research and the sharing of strategies in the future.

Margaret and Zara, you both bring important insight to this book as parents of children with PDA. Can you tell us what a diagnosis of PDA has meant to your families, and how this book will help other parents?

Margaret: After eight years of struggling to understand my little boy who seemed to defy every rule of parenting and suffer from the most extreme meltdowns over seemingly tiny things, I was amazed to read about PDA which almost exactly described my son. The guidelines for management were far more helpful than any parenting book or autism related guidance I’d come across. Realising how important it had been to understand his diagnosis, I became determined to help to increase awareness and raise the profile of PDA. I initially wrote a book about my own story but it was too personal and not really helpful enough as there were no other books on PDA. That’s when I got together with Phil, who’d written quite a bit on PDA already; Ruth, an assistant head at a special school; and Zara, another parent – and in collaboration we wrote down everything we knew about PDA. Full of quotes from parents, this book is an introduction to this amazing condition which challenges the very roots of parenting and helps us all to understand these individuals and get the very most and best from them. These children deserve just as much understanding and help as any other child on the autism spectrum and hopefully this book will help those who come into contact with them to do just that.

Zara: My son was diagnosed in 2005. The first thing I did was type the word ‘pathological demand avoidance’ into different internet search engines. I thought I would do as much research as possible and order some books from well-known websites. There were documents, leaflets and different research papers from the Elizabeth Newson Centre in Nottinghamshire, and these were really helpful. The PDA On-line forum which supports parents/carers was also invaluable. But I was suprised there was not one book to buy. Most people (myself included) had never heard of PDA. This lack of awareness can make the situation very difficult to explain to people – that your child isn’t simply being ‘naughty’ or ‘awkward’. You can get judged, labelled and often ‘told off’ by well-meaning strangers about your child’s behaviour. If I say he has ‘PDA’, they look at me blankly. The book is an attempt to remedy this and bring all the current research, information and latest approaches into one place. Getting a diagnosis is just the first step but as a journalist, I was very keen to help other families and professionals who work with individuals with PDA develop a better understanding of the condition. The one message I would have for parents and families is that with the right approach and understanding, things do get better.

Ruth, as a teacher can you talk about your experiencewith PDA in a school setting? What particular challenges do students with PDA face in the classroom, and what about their teachers?

Ruth: Sutherland House School has spent many years developing approaches for teaching and managing children across the autism spectrum. Over more recent years we have seen a growing trend in pupils with complex needs who are different to the majority of children with autism – although they share some characteristics – but are similar to each other. These are the pupils with PDA.

Strategies which were tried and tested for children with autism were not as effective for this group of children. Increased awareness and understanding of their profiles led to modified approaches for managing their behaviour, maximising their participation in the school environment and promoting meaningful social relationships for them. The different emphasis for working with children with PDA is characterised by being less directive and more negotiable, by disguising requests and by modifying expectations depending on the mood and situation. It also prioritises building positive relationships of trust and respect. Approaches used at the school have developed not only within the classrooms, but alongside the work done by the Elizabeth Newson Centre. This has given a unique opportunity to co-ordinate diagnosis, psychology input and teaching expertise.

There is an in-house programme of training within school for all staff as well as regular opportunities for discussion and collaborative working to help meet the needs of this group of pupils. Some of the challenges for teachers are using approaches with an appropriate emphasis for children with PDA in the same classroom as children who need more typical ‘autism friendly’ strategies. There are also challenges in facilitating social relationships between children who also share difficulties with empathy and social understanding. Working closely with families is an important part of our holistic understanding of each pupil too. Some pupils may have had a difficult previous experience of education and for this group, creating a safe and motivating school environment is an early priority. Many of the challenges individual pupils face are related to their anxiety, participation and their emotional well-being. All these issues are covered in the book.

The book includes a variety of examples of strategies including contributions from teachers, parents and pupils themselves which outline useful approaches for teaching and managing children with PDA. These children can be as complex and challenging as they are rewarding and engaging. We hope that this book will lead to an increased understanding of these children and promote a positive experience of school for pupils, parents, and education professionals.

Phil Christie is Director of Sutherland House Children’s Services and leads a team of Consultant Child Psychologists at the Elizabeth Newson Centre, which carries out training and research activities and has particular expertise in PDA. He is also Associate Editor of ‘Good Autism Practice’, and became Chair of the Advisory Council of the Autism Education Trust in 2009.

Margaret Duncan is a GP and parent to a child with PDA. She coordinates the PDA Contact Group (part of Contact-A-Family), an internet based group providing information and support for parents and professionals.

Ruth Fidler is Assistant Head Teacher at Sutherland House School where she has worked for 18 years.

Zara Healy is a parent of a child with PDA. She trained as a journalist and worked for the BBC for nearly a decade as a radio and television reporter.

Copyright © Jessica Kingsley Publishers 2011.