Introduction

Background

Since 1964 The National Autistic Society (NAS) has been supporting families and professionals working with people on the autism spectrum. After years of experience of education and support for autistic children and adults, building on their views and the views of their families – and the evidence from research and practice – a framework emerged that has formed the basis of their training on autism and their provision of services. This framework highlights five key pillars of understanding and good practice through the simple mnemonic ‘SPELL’:

• Structure
• Positive approaches and expectations
• Empathy
• Low arousal
• Links

Structure is important for everyone, but autistic people advise that this is vital in reducing anxiety and ambiguity, and can improve self-efficacy and self-esteem leading to better academic and other outcomes and more positive mental health. Positive approaches and expectations directly impact on the narrative around autism that for so long was negative and unhelpful and promoted social exclusion. Our emphasis on Empathy serves as a reminder that our failure to see the world from the point of view of others creates great problems for the autistic person and is a major barrier to our understanding and responding. Low arousal approaches are increasingly recognised as important in reducing the stress associated with complex demands and differences in sensory processing. Finally, Links reinforces the need for consistency of approach involving the person, their family and all those involved in the process of providing help or support.

Although many years have passed since this framework was first developed, we believe it has stood the test of time and still offers a valuable way of demystifying, understanding and responding to autism. Of course over time, as with all materials, these have required revision and updating. These 2nd edition materials have tried to incorporate the recommendations from ongoing changes in practice and terminology, evaluation, revising and updating content and resources. We are grateful for the time and effort of all those who contributed to this revision and who have provided quotations.

We particularly acknowledge the ongoing contribution to these materials of many autistic people and to the original work of the late Dr Lorna Wing and her colleague Dr Judith Gould from The NAS; Gary Mesibov and the late Eric Schopler of Division TEACCH and of past and present staff in schools and services for adults.

The overarching aim of this resource is to make the experience, knowledge and skills of working with autistic children and adults available and accessible.

This revision will elaborate on the SPELL framework as a way to both understand and support children and adults on the autism spectrum. It is designed to be used in one of two ways: by individuals studying for their own personal development or by trainers working with a group of staff or carers. The involvement of autistic people in the delivery of training is strongly recommended.

Terminology and underlying ideology

Autism is now regarded as a difference in the way the brain develops (sometimes called a developmental difference) that creates an uneven picture of strengths alongside difficulties, affecting the processing of information, communication, thinking and organisation.

In recent years we have seen a move away from the model of autism as a medical disorder to one where autism is seen as a part of natural human variation, and where autistic people play a much more active role in advocating for recognition and proper support. That is not to dismiss the difficulties faced by autistic children and adults, but to acknowledge that their origins are social in nature and not part of a disease process.

Autism was first described in the scientific literature by Leo Kanner in 1943, although there had been many earlier accounts of the condition. Independently and only really known to the English speaking world much later on, Hans Asperger described a similar yet different group of children in 1944. However, at the time there was no name for the condition, just descriptions of its features. Terms such as ‘psychoses’ and ‘childhood schizophrenia’ were used and are still common in other parts of the world. Initially autism was felt to be a mental health disorder akin to schizophrenia and many children and adults were kept in psychiatric institutions. Autism was essentially regarded as a disorder of childhood affecting boys, with little or no thought given to adults or to women and girls.

In the 1960s and early 1970s psychodynamic theories prevailed with parents blamed for ‘causing’ autism. The dreadful term ‘refrigerator mother’ was coined by people such as psychoanalyst Bruno Bettelheim. Over time these theories were debunked by research and by the 1980s autism was generally accepted as biological and developmental in nature and incorporated into official diagnostic manuals as a specific disorder. It was also seen as a life-long condition and not something a child would ‘grow out of’. Nowadays, mainly thanks to autistic advocates and the concept of neurodiversity, autism is seen more as ‘a way of being’ – ‘different not less’ – and that with opportunity, understanding and reasonable adjustments the future for autistic individuals is much more promising.

It is also increasingly accepted, thanks to the work of the late British psychiatrist Lorna Wing and her colleagues, that although autistic people may share many of the same characteristics, autism is best described as a spectrum – that its boundaries are not clear cut and can appear in as many different ways as there are children or adults with the condition; there are no two people are exactly alike.

This resource will use the terms ‘children and adults on the autism spectrum’, or ‘autistic children and adults’, but these are synonymous with autism spectrum disorders, autism spectrum conditions, autism and Asperger syndrome.

Recent research by psychiatrist Christopher Gillberg in Sweden even suggests that autism as a discreet condition is relatively rare and that children and adults will show clusters of other neurodevelopmental difficulties such as attention deficit hyperactivity disorder (ADHD), dyspraxia, dyslexia, Tourette syndrome and seizure disorders, including epilepsy, which further blurs the boundaries.

Overall, it is the narrative around autism that has shown most significant change, moving from ‘devastating disability’ to neurological difference – with strengths as well as difficulties – in need of support and understanding rather than ‘treatment’.

The approach taken in this resource reflects a person-centred approach; it draws from the experience of autistic people and their families. In order to support the person, it is necessary to understand the individual and how they see the world and how the world impacts on them. This is the essence of the approach.

Part 1: Understanding autism provides the information to develop this knowledge and understanding. Only then can one apply the SPELL framework described in detail in Part 2: Supporting children and adults on the autism spectrum. The SPELL framework is not the only element of good support for people with autism; using other strategies is essential to helping people with autism reach their potential. These approaches will be outlined with information provided for further reading. Training on these approaches is available elsewhere so the aim of this resource is to help people make the links between the SPELL framework and these other approaches, and to think about the wider context of people’s lives as well as the day-to-day needs of the individual.

The SPELL framework fits neatly into the group of person-centred approaches described in Mansell et al (2005) which are relevant to people with intellectual and developmental disabilities. Person-centred action helps staff to work positively with individuals and learn about their individual strengths and preferences and, as such, possible directions and aspirations to feed into planning processes. Planning informs longer-term directions for people and helps to ensure that action develops and does not become stale.

In order to help people think about their future, to plan and have dreams and aspirations, it is essential that there is an inclusive and positive narrative and that those working with autistic people really get to know them and know how their autism and the world around them impacts on their lives, as well as the strategies that work best to enable and empower them. A positive and inclusive approach is focused on enabling people to participate in all aspects of their lives and the experience of being respected, valued and listened to. So often what we hear described as ‘challenging behaviour’ is a result of our failure to understand the person and their experience of the world.

This positive, enabling but empathetic approach is at the heart of this resource.

Who can use this resource?

This handbook which provides a self-study route through the content for anyone who works with or supports a child or adult on the autism spectrum. The book guides the reader through the materials and when to watch particular videos and do the various exercises and activities, to encourage independent thinking and learning. The annexes, video clips and audio are all available to download online from https://www.pavpub.com/understanding-and-responding-to-autism-self-study-resources/.

A copy of the book is also included in the Understanding and Responding to Autism: The SPELL framework training resource. The training pack is designed so that those who have experience and knowledge in the field of autism can train larger groups of people within their own organisations or to other organisations. The self-study guide mirrors the trainer’s script from the pack and provides the background information needed to run the training, provided in a convenient format.

We recommend that learners using the handbook for self-study follow the materials in the order in which they are written, but you can do so all at once or over several sessions. It should take between five and seven hours to complete, depending on reading speed and how many videos you watch. Recommended further reading for people who would like to continue to learn more is provided at the end, on p109.

Learners should take any opportunity to discuss the ideas and their learning with a supervisor, more experienced support person, or even with fellow learners following the training materials. This is particularly important where staff teams are being trained – even if they follow the self-study route primarily, opportunities should be provided by their organisation for discussion and group work around the concepts with a focus on the people they support. This is important for consistent attitudes and practice across the team.