Integrating Music Therapy and Biofeedback – An Interview with Dr. Eric Miller

Dr. Eric B. Miller is a psychotherapist, music therapist and biofeedback therapist with experience in inpatient, outpatient, corporate and educational settings. Dr. Miller founded the Biofeedback Network and serves as Executive Director of non-profit organizations Expressive Therapy Concepts and Music for People.

Here, Dr. Miller discusses his new book Bio-Guided Music Therapy: A Practitioner’s Guide to the Clinical Integration of Music and Biofeedback, and how this cutting-edge and holistic intervention can be used with a wide range of client groups.

How were you attracted to the field of music therapy? Can you talk a little bit about the work you do, and with whom?

I was told about Music Therapy (MT) back during my high school years and later had a chance to sit in a few MT classes at the University of Dayton while I was studying psychology and philosophy at Antioch College in the early 1980’s. It seemed that MT was an ideal combination of my interest in psychology and love for music improvisation. The focus of the Dayton class however was on special education, which I did not have an immediate interest in, so I shelved the idea of MT for several years until I had graduated and started to work in psychology as a therapist. At that point, I found music very effective for building rapport and moving deeper into issues that would have taken much longer to reach with words alone. Since then I have incorporated MT into my individual psychotherapy, family systems therapy, addictions treatment, ADHD treatment and other biofeedback and neurofeedback approaches. I have worked with diverse populations from young children with developmental disorders, kids on the autistic spectrum, ADHD children from 8 – 16 years old, ADHD adults, and a variety of seniors.

How did you discover biofeedback and what led you to integrate it in your music therapy practice?

I was working as a counselor at Valley Forge Medical Center and Tracey, the Director of Social Work, had a biofeedback setup in her office. I was very curious about it and was very excited to hear that she was about to start in-service training in biofeedback for the nurses. I asked her if I could join in, but she said no, that it was only for the nursing staff, not counselors. I continued to ask her about it and finally she relented and agreed to let me join the session. On the day of the first training class I arrived early and as it turned out, none of the nurses showed up and I was able to work with Tracey individually. I ended up continuing to study biofeedback with her and became board-certified with Tracey as my supervisor.

What is Bio-Guided Music Therapy (BGMT) and how did the book come about?

Bio-Guided Music Therapy is the use of real-time physiological data to inform Music Therapy intervention. It works by returning the client’s data in visual displays, such as colored bars or graphs or even fractal designs, as well as sound that represents their physiological indicators. One example is a simple bar showing heart-rate variability with it’s level also indicated in sound by a Shakuhachi flute.  This video shows some examples of these displays:


Any music therapist can do it on some level, however some training might be helpful.

Technology has been advancing quickly, but there really has been no update on the juncture of biofeedback and Music Therapy since Joseph Scartelli wrote about it over 20 years ago in 1989. A book that synthesizes this combination has been long overdue. As Norman Shealy, MD writes in his forward: “The marriage of music and biofeedback is one ‘made in heaven’. It represents the best integration of two powerful self-regulation approaches to health and illness.” (page 14). I’m sometimes puzzled as to this hasn’t already been written, but have come to realize that to go deep into this synthesis, one really must have acculated a good amount of clinical experience in both music therapy and in biofeedback. Surprisingly there are not that many practitioners that share certifications in both disciplines.

Which client groups is Bio-Guided Music Therapy (BGMT) most effective with?

The impact of BGMT is wide-ranging and cuts across many treatment populations. In this book, I focus on several client groups, however many more may be treated as well. I have explored the use of BGMT for anxiety, high blood pressure, migraines, general stress, and vascular circulation issues, in one group. Another group that BGMT is effective for is addictions clients. These may be drug, alcohol, tobacco or other addictions. Stroke, early-stage dementia in seniors and general senior mental stability falls into a third grouping. And a forth group is pain-related. Some of the conditions may be functional abdominal pain, headache and back pain – noting of course some overlap with the headache clientele with the first client group.

It sounds quite a high-tech approach – how can it be used in a normal clinical setting?

Yes, the sound of it may come across as high-tech or somehow technologically intimidating, however I think this is one of those cases where it is just plain cumbersome to write about, and much easier to do it! If you tried to describe the theory and mechanisms of a modern cell phone, just imagine how high-tech and incomprehensible it might appear! Yet cell phone have become fairly ubiquitous and even young kids use them regularly. There are numerous ways to integrate BGMT into normal clinical settings using both wired and wireless devices. Each particiular situation may require some creativity on the part of the clinician and or consultation with an experienced researcher/practitioner.

What do you hope readers will take away from the book?

My hope is that readers will take away the idea that Bio-Guided Music Therapy is not just a good way to document the physiological impact of music therapy sessions, but that the process itself is a vital and dynamic form of therapy in its own rite. BGMT offers the unique opportunity to craft a Music Therapy session in real time based on the client’s physical responses. I also hope my readers are inspired to use BGMT as a starting point for their own explorations, research and protocol development.

Copyright © Jessica Kingsley Publishers 2011.

Incorporating Music into Speech and Language Therapy for Kids with Autism Spectrum Disorders – An Interview with Dr. Hayoung Lim

Dr. Hayoung Lim is Assistant Professor of Music Therapy and Director of Graduate Studies in Music Therapy at Sam Houston State University, Texas, USA. She has worked as a music therapist in a number of hospitals, schools and organizations with a diverse range of clients including individuals with mental illnesses, developmental disorders, medical problems, neurologic impairments and dementia. Her research focuses on the effect of music on children with ASD and the effect of musical experiences on cognition, speech and language, and physical rehabilitation. She is also a concert cellist and lives in The Woodlands, Texas with her husband and son.

In this interview, Dr. Lim explains why music is so effective at developing communication skills in kids with Autism Spectrum Disorders (ASD) – the subject of her PhD research and new book, Developmental Speech-Language Training through Music for Children with Autism Spectrum Disorders: Theory and Clinical Application.

Why do children with ASD respond so well to music?

Children with ASD appear to have intact pattern perception and production ability. They also tend to follow the Gestalt style of language acquisition which is based on the pattern perception. In parallel, all of the musical behaviors require pattern perception and production; and these abilities are commonly found in children with ASD. It follows that patterns in music can facilitate the Gestalt style of language acquisition and the consequent speech- language development in children with ASD.

One child I worked with was a five year-old boy who could not speak a single word during our initial meeting. When I start singing one of my composed songs with pictures, he looked at the pictures and my mouth intensely. I then tried a couple well-known songs such as “Twinkle, Twinkle, Little Star” and “Old McDonald”, but he turned his head away from me. From this example we can see that a new speech pattern embedded in a song with the optimal perceptual level (one that is not too familiar and not too complex) can capture the best perceptual capacity in children with ASD. In addition, presentation of the corresponding visual materials (e.g., pictures, photos, and real objects) can facilitate the perceptual mechanisms.

How do you measure a child’s achievements?

When children with ASD start predicting the next verses in the presented songs or show a great level of anticipation in the session, I consider them making progress. I measure the number of spontaneous words or verses in a song and use the ‘post-test’ type of measurement after each set of Developmental Speech and Language Training Through Music (DSLM) protocol. The post-test consists of verbal questions (i.e., What is this? What is the pink pig doing?) and the children’s verbal responses.

What is timely and/or unique about the book?

This book provides both theoretical orientation and clinical application regarding use of music in speech-language training for enhancing speech production and functional communication in children with ASD. The most promising explanation for musical behaviors in autism may lie in the knowledge of brain function and perceptual processes of children with ASD. Unfortunately, books that provide the theoretical orientation for perception and production of music in children with autism, and that explore the mechanisms for the musical responsiveness of children with autism are limited. Therefore, empirical mechanisms of music perception and production in children with ASD, as well as the theoretical foundations for the use of music in treating autism presented in this book, have a great value. This book may augment the understanding of the perception and production of both music and speech. The link between music and speech may be verified as a result of thorough research review and the author’s investigation, and the common principles and the mechanisms of both music and speech production might be explained in the book.

Furthermore, the contents of the book might support the previous studies that have suggested the significance of integrating the two domains, music and speech, in early childhood development. The book demonstrates the theories supporting a developmental speech and language training tool through music and validating the functions of musical elements in enhancing speech. The chapters of clinical implications in this book might be useful for music therapists who specialize in treating children with ASD to implement interventions for enhancing social communicative functions of their patients.

In addition, clinical suggestions in this book will enhance the collaborative efforts of speech/language therapists and pathologists (SLTs/SLPs), special education teachers, and music therapists who practice speech-language training for children with ASD. For example, a few chapters of the book inform the a selection of materials and interventions based on scientific evidence, and suggest a more systematic implementation of a speech/language training tool through music. Therefore, the therapists or teachers can produce more consistent outcomes and follow procedures indicated by the best practice.

Why was it important to include Applied Behavior Analysis (ABA) as a particular topic?

ABA has often utilized music, especially songs, in its language assessments and training; however, the theoretical justification for the use of music in the approach is lacking. Previous studies in ABA approaches did not provide the scientific mechanisms for how songs impact speech/language of children with autism. As a result, those programs or interventions depended on very limited use of music, and children with autism could not experience the benefits of using a broad range of musical interventions and various musical activities. A thorough discussion is needed to develop the mechanism and strategy of using music in an ABA verbal behavior approach, and to explore systematic interventions with music for enhancing communication skills for children with ASD. My book establishes the protocols of music therapy language training in autism within a Applied Behavior Analysis (ABA)/Verbal Behavior (VB) approach, and explores the incorporated use of music within the common training approach.

What would you say to SLTs/SLPs who feel they are not ‘musical’ enough to use this approach effectively?

One of the greatest benefits of a music therapist led DSLM intervention is the quality of music; If the music is not presented in a good quality, it is hard to anticipate the therapeutic effects of music in the clients. Because of these concerns and others, many SLTs/SLPs who are not musically inclined tend to avoid using music in their practices. However, recorded music with the same quality can be used in speech-language training for children with ASD.  One suggestion might be to consult a music therapist or professional singer, and ask them to record the musical materials that you can use in therapy. Take it from me: We’d love to sing for you!!

Copyright © Jessica Kingsley Publishers 2011.

British Medical Association (BMA) Honours Three JKP Titles at 2011 Book Awards

We were so thrilled that three JKP titles were honoured at the prestigious
2011 BMA Medical Book Awards, which took place on Wednesday, 14th September
at BMA House in Tavistock Square, London.

JKP commissioning editor Steve Jones attended the awards ceremony and was joined by JKP authors Ilona Roth, Liz Hoggarth, Hilary Comfort and Tony White, whose books each received the distinction of “Highly Commended” and were nominated for first prize in their respective categories.

All nominated books were reviewed by a select group of doctors and educators. Here are some more details about the books, along with some comments from the judges:

A Practical Guide to Outcome Evaluation
Liz Hoggarth and Hilary Comfort
Highly Commended – Health and Social Care Category

‘This is an unusually successful book with one typically germane phrase in the introduction: “We hope that you will find some sections of this material that specifically answer the questions you are faced with in evaluating your work. Dip into the material for something you need or work through it systematically, Use it for reference, Make it work for you.”
It’s particularly relevant at an especially innovative time in health care.’

The Autism Spectrum in the 21st Century – Exploring Psychology, Biology and Practice
Ilona Roth with Chris Barson, Rosa Hoekstra and Greg Pasco and Terry Whatson
Highly Commended – Popular Medicine Category

‘This book is well-researched and provides clear, impartial and accurate knowledge of many facets of the autism spectrum. Its language is very accessible. The book was designed as a self-contained volume for a variety of readers, not necessarily with any scientific or specialist knowledge, either “as part of an education programme or for general interest and self-directed study” or as a module in the Open University. The book is written by Open University academic staff in association with a number of professional in the autism field and covers a wide range of topics, clearly showing the multidisciplinary nature of the field. To encourage active participation and adult learning, each chapter section has a summary of key points and at the end of each chapter is a list of learning outcomes and self-assessment question, and comments/suggested answers on these areas are nicely places at the end of the book. The important words and concepts are written in bold and this together with exercises, learning outcomes and questions, enhances the value of the book even for those pickling it up out of interest rather than as part of a study as it provides a useful summary and worked examples.’

Working with Suicidal Individuals – A Guide to Providing Understanding, Assessment and Support
Tony White
Highly Commended – Psychiatry Category

‘This is “must” reading for the different practitioners who work with person who do self harm. Provide an theoretical and practical introduction to the type of personality who do self harm or are suicidal … This book presents and comprehensive quantitative and qualitative suicidal risk assessment and describes valuable management strategies both in how to manage people with suicidal and pseudo-suicidal behaviour. It’s easy-to-read and understand provided with illustrations and case studies for better understanding. In my opinion this book fills the gap in the current literature addressing suicide and self-harm behaviour.’

It’s always a pleasure to attend the BMA Awards, partly as an opportunity to catch up with authors in the illustrious interior of BMA House, but also to hear about new outstanding medical books being published and to enjoy the buffet which never fails to impress (white chocolate, cherry and lavender tart was a particular hit this year)!

Another highlight of the night was the keynote address from President of the Royal College of Pathologists Dr Suzy Lishman, FRCPath who – as well as gamely posing for all of the award photographs – gave a compelling keynote laying out the case for public understanding of medical science in general and particularly the work of pathologists. Contrary to public opinion, not all pathologists are “CSI-style” forensics but form the backbone of health care, carrying out tests on blood samples, pregnancy tests and so on – over 70% of all diagnoses made in the NHS.

We’d like to offer our congratulations and thanks to all nominated authors who worked so hard to write the books – I know we’re already looking forward to next year’s BMA Awards!

Copyright © Jessica Kingsley Publishers 2011.

“One should never underestimate the capabilities of children with special needs or their creativity.” – An Interview with Johanne Hanko

Johanne Hanko, PhD, has over 20 years of experience as a teacher, trainer and capacity building specialist for children and adults with special needs, and has worked in a wide range of countries across North America, South America, Asia and Africa. For over 10 years she was a technical advisor and member of the Thematic Working Group on Disability-Related Concerns for the United Nations’ Economic and Social Commission for Asia and the Pacific. She currently resides in La Paz, Bolivia.

Dr Hanko is the author of the new book, 100 Learning Games for Special Needs with Music, Movement, Sounds and…Silence. Here, she talks about some of the invaluable positive affects that these activities can have on the physical, cognitive, social and emotional development of children with special needs.

You have had a very interesting and varied career. How did you come to work with children with special needs?

It all started when I was in high school; my aunt was working in an institution for children with learning disabilities. One year she brought me to celebrate Halloween with them; I was introduced to the kids, many older than I was, and to the special needs they had. That is when I decided that I wanted to make a difference. As I had been studying music since I was a child, and was interested in psychology and in medicine, I decided to study Music Therapy. This brought me to work with children with various types of disabilities and special capacities, including those with emotional and physical challenges, children with Down’s syndrome and those on the autism spectrum. Then I moved to Thailand and worked for the UN’s Food and Agriculture Organization, first on the capabilities of people with learning disabilities in Thailand and then on skill building and training for persons with differentiated capacities in Asia and Africa.

How did you develop this activities book?

While living in Thailand, during an exhibit of my collection of musical instruments, I held a demonstration of how to use music and musical instruments as a teaching tool for children with disabilities, especially in rehabilitation and in skills development. The Thai children responded extremely well – even better than I had anticipated. Some children were so engaged by the exercise activities that they forgot to use their crutches. As a result, the Ministry of Education asked me to give master classes to teachers from both special education and mainstream school systems as part of their yearly training and pedagogical specialization classes. I used the games I had developed as a tool for the teacher training programme. The teachers loved the games and their adaptability to locally available materials, and to the specific challenges encountered by the children; and so they asked me if I could compile these games in a book that they could use in their teaching programme.

Many of the games in the book use music and movement. How does this help motivate children with special needs to learn?

Every child loves to play, run and dance. The games were designed to use this tendency as a “distraction” from the hard work involved in developing a specific skill or practicing a certain movement, so that the child actually enjoys what he is doing. One example would be a child that has a mobility and/or coordination problem with their arms. Physiotherapy would require the child to practice moving the arms – not enjoyable for a child. However, a game that asks the child to “bang” on a drum strengthens the arms and improves coordination, while offering the incentive – and great pleasure – of hitting the drum and hearing the sound it makes.

Can the book be used with all children, no matter what their particular needs – for example, deaf children? If so, how do the games accommodate this?

Most if not all the games in the book can be adapted to the specific needs and capabilities of each child. When the game indicates a limitation, it usually includes an explanation on how it can be adapted for a specific type of disability. Although it would be impossible to include all the variations in a single book, a good teacher, educator or parent that knows the capabilities of the child would know and understand exactly how to adapt the game.

Regarding the case of hearing impaired children, the reality is that many children can hear something; very few are completely deaf. As such, the vibrations can be partially heard and certainly felt by the body allowing a child to feel and differentiate various types of vibrations through specific activities.

What is your personal favorite game in the book?

It is difficult to say which one of the games is my favorite since my favorite game is one that gives me a positive and obvious result with a specific child. This being said, I will say that one of my favorite games is “Contemporary Music or Drawing Music” (activity #80, page 103) because I was told not to use this game with children with differentiated capacities nor with mainstream classes because it would lead to failure: “Children in special education and elementary school children cannot compose,” I was told. Well I can tell you this is not true. I was amazed to see the creativity of some of the children, while all came up with something different and interesting; some compositions were quite beautiful. One should never underestimate the capabilities of children with special needs or their creativity.

Another great game is “Feather Racing” (activity #70, page 92), which allows the child to control breathing. This game is especially useful with Down’s syndrome children who have difficulty controlling their tongue. Initially spitting on the feathers more than blowing, they eventually learn to control their tongue and blow only air, thus improving their speech ability.

What do you hope special education teachers, teaching assistants, parents and carers will take away from this book?

Readers should not use this book as a recipe book but rather, they should adapt each game to their own style and environment, according to the specific needs and capabilities of the children, and to the materials available.

More importantly, readers must enjoy the games along with the children; children enjoy these games and do not see them as learning tools, but rather as play time – unaware of the structure, rehabilitation, learning and skills development involved. Children should never be led to believe that they have “failed” at the games.

But most of all, I hope readers will appreciate those magical moments I have been privileged to witness, when a child shines from the joy of not only having reached the specific goal defined by the game but also from finally surmounting a challenge and acquiring a new ability that will be so useful in his or her daily life activities.

Copyright © Jessica Kingsley Publishers 2011.

Transformative Supervision for the Helping Professions – An Interview with Nicki Weld

Nicki Weld is Social Work Professional Leader (general health) for the Wellington district health board in New Zealand. She is also Director of CNZN Ltd, New Zealand, which provides training, facilitation, supervision, consultancy and solutions for child protection and social service management and workers. She has worked for a number of years in a variety of social service and child protection roles, including senior social worker, supervisor, senior trainer, and as a national social work advisor, and is co-creator of the Three Houses information gathering tool.

Here, Nicki shares her take on the valuable role of a supervisor for the “helpers” in our society, and discusses her new book, A Practical Guide to Transformative Supervision for the Helping Professions.


Nicki, please tell us about your background and what attracted you to working in the “helping professions”.

I live in Wellington, Aotearoa New Zealand, and I grew up in Christchurch in the South Island. I come from a long line of New Zealanders who came to New Zealand in the 1860s, and my immediate family all live here. The land and sea are very important to me; they bring me balance and inspiration.

My journey into the helping professions came from a very early age, I’ve always been acutely aware of unfairness, injustice, and had empathy for all sorts of things! As with most people drawn to working in the social services, my life also threw a range of challenges in front of me, and these coupled with global challenges in the 1980s, such as the threat of nuclear war and human rights issues in my own country and abroad, made me decide to study political science. After a variety of work experiences I then went back and studied social work and knew I’d found a profession that would allow me to grow my skills and challenge myself in a variety of ways.

I’m currently a Professional Leader for general health social work at Wellington Regional Hospital here in New Zealand, and I also am a director of a training, consultancy and supervision company called CNZN Ltd and work both nationally and internationally through this. So my work has moved to having more of a leadership focus and supporting workers in a variety of organisations. It’s exciting and challenging work that I love doing.

What led you to write this new book?

I’ve been supervising for sixteen years. I started supervising quite young when I became a senior social worker, and really enjoyed hearing other worker’s successes and challenges and playing a role in enabling reflection on these. When I took up my current leadership role, I decided that to best support my clinical knowledge development as a professional leader, I would undertake supervising social workers across various health specialities. So I supervise six social workers at the hospital who work in women’s health, neonatal care, child oncology, adult oncology, cardiac care, intensive care, emergency department, and a cultural specific service for Maori. I also supervise four other people externally from a range of professions.

Being so immersed in supervising, made me think here is this organisationally approved space for people to pause and reflect on their work, so what better place for transformative moments to occur through turning up the volume on the insight a session can provide, hence the subtitle ‘amplifying insight’! I wanted to take reflective practice to another level. I got bolder in what I was doing as a supervisor and I wove in counselling techniques and other ideas. The New Zealand supervision conference back in 2010 was really inspiring to hear what different things people were trying in supervision. I discovered working in a more transformative way makes for such a richer supervisory experience that I just had to write about it. I was exploring and connecting with what was happening in the world on many different levels and exploring leadership and personal development concepts which I draw on in my book. I also had some great conversations with some of the supervisors at the hospital. Everything started to come together so I started writing and the book almost wrote itself! There’s something really amazing about taking supervision to this level.

What do supervisors struggle with the most in facilitating change for themselves or their supervisees?

I think instead of facilitating change and professional development, supervisors can get stuck on trying to be experts on practice and having lots of answers. Its tempting to provide a ‘goodie bag’ of information rather than working with a workers existing resources and stretching these to find a pathway forward. That’s what I like about supervising people in so many different roles; I freely acknowledge my clinical background is child health and child protection and yet I supervise people working with people who are 90! They can get good advice and information about resources from a range of places, and I’ve decided my job as a supervisor is to locate back to them in their work and what they are discovering and developing personally and professionally.

As I talk about in the book, my best transformative moments in supervision both as a supervisor and supervisee have come from boldness and braveness. They’ve also come from courage and creativity, where the supervisor has brought their knowledge and understanding of a person into the room and made a connection, or asked a question that takes the supervisee on a new direction. It’s also when a supervisee has said, “I want to go further, I want to look deeper, not just ‘debrief'”. Transformative work is awesome work, and I think my book provides lived out examples and techniques to help support this.

You have experience supervising workers involved with child protection – what are the particular challenges of working with this group and how have you managed them?

When supervising people who work in the field of child protection I am always conscious of what Tony Morrison called the ‘anxious nature’ of this work. People need a chance to clear their emotional reactions and have questions and constructs that can help them feel confident about how they are building safety around the situation. It requires in depth exploration of what the worker has done and what they are thinking and experiencing, it requires me as supervisor to notice any areas that may have been missed due to the emotional intensity of the work. It’s kind of like being a satellite; the supervisor takes a really big picture view to scan the safety planning or actions taken and then respectfully checks any detail that may need further clarity along with how the worker is doing.

My experience is that the most helpful way as supervisor approaching child protection work is to support the principles of not working alone – so be along side the worker in the session as a partner in helping build safety, to reinforce clear steps and processes that support safety as a way of bringing some objectivity back into emotionally charged situations. It also requires being aware of any professional dangerous dynamics that may inadvertently be occurring. What I’ve found is that the principles of safety and wellbeing apply across the spectrum of the work we do and apply to the worker just as much as the individual or family. My job as a supervisor is to explore both of these levels in supportive constructive way that ultimately supports professional and personal development that positively benefits those we are in service to.

In the book you talk about “honest honesty” – what do you mean by this, and in which situations is it appropriate or even necessary to help another supervisor or supervisee?

Ah yes! Here in New Zealand we are so far away from the world we get to make up new language concepts like that one! This came about because I’d noticed as supervisor that sometimes I’d come out a session thinking ‘Damn, I so missed an opportunity to really name something there, instead I kind of went around the outside of it and hoped they’d get it. I call that ‘soft honesty’ – it’s honest but could have gone deeper and been more direct. By ‘honest honesty’ I mean when you take a deep breath and say what you are really thinking in a way that invites discussion and reflection. You put it out in the room and it takes courage to do it because it’s usually the more personal self of the supervisee you might be connecting to. It requires careful thought and is linked to something that you believe is really important from a professional or personal development or practice perspective to name and be direct about.

I give a couple of really good examples in the book where supervisors were honestly honest and it created a transformative change. Another example is recently a colleague of mine was noticing their supervision with a worker had no depth, it was pleasant but didn’t get to the heart of anything, and outside of this the worker wasn’t doing too well in her interpersonal relationships with others. I suggested to my colleague (and gave her the section in the book to read) that she use honest honesty about the issues, to put her observations on the table in a direct and transparent way. So she did, and the worker burst into tears and said how glad she was that the issues had finally got named and their whole supervision changed. That’s honest honesty.

Why was it important to you to include the chapter on “Global Influences”?

Believing we are all separate is what is causing much of the damage to our world. It is impossible to just pretend we have our little individual piece of the universe and what we do doesn’t impact on others. Everything and everyone is linked through interdependence and as workers we exist as a part of a greater whole of humanity. Watching the impact of the worldwide recession and also the impact of natural disasters reinforced this for me, we can’t pretend there is no wide felt impact from such events. When my home city of Christchurch – with nearly all my family living there – was hit by two devastating earthquakes, all of New Zealand experienced an enormous traumatic impact. We also had immediate help internationally which was so heartening and supportive. In a time of a national crisis the world came to help us, this little country at the bottom of the world. That alone shows me the connections that exist globally amongst us.

So this chapter and the one on the environment of workers are drawing on ecological and systems type thinking so supervisors also stay mindful of impacts occurring on many levels for workers and ourselves. By talking about global influences I also wanted to say that through engaging in our own transformative proves and self actualisation we ultimately contribute back to the world. I sincerely believe my life is not just about me, it is about having learning experiences that I can give back to the world that I inhabit. This comes through me taking every learning opportunity that is put in front of me and through this help support positive change on many levels. Self-awareness and reflection is the first part of this which is way supervision is such an amazing resource and opportunity.

What do you see as the fundamental role or first responsibility of a supervisor to her colleagues and supervisees?

To support professional and personal development that enhances service to others and contributes to positive change in our world. Supervisors are leaders, sometimes we haven’t quite realised that. Our world needs many good leaders. My book is ultimately about transforming yourself, because that’s always where you have to start, be brave in your work and enjoy it!

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.