Difference Not Disorder

Understanding Autism Theory in Practice

Dr Catherine Harvey, Kevin McFadden

• Publisher: Jessica Kingsley Publishers
• Year: 2018
• ISBN:
  9781784508630
• Topic: Psicologia
• Subtopic: Disturbi dello spettro autistico

Interventions and educational approaches for children with autism spectrum disorders have developed in response to the different models for how autism has been constructed and understood. This book explores the evolving theories on autism and how these have impacted the interventions and outcomes in education. Drawing on 30 years of professional experience and detailed research, Harvey exposes the myths around autism, advocates for understanding autism as difference rather than impairment, and provides practical guidance on teaching and learning, behaviour management, addressing sensory and physical needs of children with ASD. This accessible overview shows how to put autism research into practice, learn from historic mistakes and create the most supportive environment for children on the autism spectrum.

PART I

AUTISM HISTORY
AND THEORY

Thinking and Constructs
Underpinning Autism as We
Know It Today

Chapter 1

WHAT IF WE GOT
IT WRONG?

Introduction

In this chapter I outline the main idea from which this book emerged, that is, in constructing autism as a disorder we may have it wrong. In doing so, I argue that this view has led to our current endeavours to fit students with autism into a socio-educational system that often stresses, distresses and confuses them, and that if we change our view to one in which autism is a ‘different mind’ then we could be free to provide school/classroom environments that are more fitting to these students.

Following this, I briefly outline how autism is currently constructed by those, like me, on the outside looking in. I have done this because, even with society’s increased social awareness of this condition, no book on this topic can at present be written without a brief description of autism given its pervasive and behavioural-based nature.

The Book’s Origin: What If We Got It Wrong?

In writing this book I am guided by two beliefs. The first is that knowledge has different forms. For example, within the field of autism we have what may be considered academic, professional and personal knowledge, that is, the contributions to knowledge made by research articles are filed under academic knowledge; the contributions to practice made by educational approaches and methods are classed as professional knowledge; and the ad hoc contributions to human insight and understanding made by anecdote and experience are considered personally acquired knowledge. However, in our science-driven world, academic and professional knowledge, which often resemble each other, have become paramount over personal or lived/embodied knowledge. For me this is a crucial, debilitating imbalance because personal knowledge often grounds or earths both academic and professional knowledge:

Like the elements of electricity, I see the academy as the neutral, steady current and the profession as the live, pulsating one. Although electricity will flow with just these currents, it is unsafe without the earthed element of the personal. This ‘earth-ing’ occurs in the embodiment of knowledge within the reflective practitioner in which knowing, doing and being become one. (Harvey 2015, p.20)

The second premise guiding this book is that, regardless of the form of knowledge we draw our ideas from, our actions are guided by (1) what we value and (2) our personal constructions, and that these (3) are often bound to the cultural beliefs of our society and our generation. Therefore, if I construct that the world is governed by objective laws and truths which can be known, and once known used to predict outcomes, I will value the scientific research of academic knowledge above all other forms of knowledge. If, on the other hand, I construct that the world can only be known through subjective interpretation and meaning, I will highly value the stories of personally acquired knowledge.

However, within any field where we are touching upon human emotion, such as parental feelings, what we construct and value is underpinned by opinions and passions that make relationships with knowledge much more complex than vying towards our preferred mode of insight and influence. Important decisions must be made, and the plethora of information bombarding parents/carers and practitioners makes decision-making difficult because each decision has positive or negative consequences for a child – for a family. Also, for many parents, and some professionals, making these all-important decisions, initially, at least, they are new to autism and have little embodied knowledge from their lives, or, in the case of professionals, their training, that can enable them to make sense of what at first is totally overwhelming. So, these parents and professionals make sense by connection to the very constructions and values that inform their decisions and enable them to take appropriate actions in other areas of their lives:

We respond to its connections and not simply to the immediate occurrence… We may approach it, so to speak, from any one of the angles provided by its connections. We can bring into play, as we deem wise, any one of the habits appropriate to any one of the connected objects. Thus, we get at a new event indirectly instead of immediately – by invention, ingenuity, resourcefulness. An ideally perfect knowledge would represent such a network of interconnections that any past-experience would offer a point of advantage from which to get at the problem presented in a new experience…knowledge means that selection may be made from a much wider range of habits. (Dewey 1930, p.396)

However, seeing knowledge itself as a living entity, ever changing, metamorphosing and, it is to be hoped, expanding, we can only be enabled to make wise decisions and take appropriate actions as far as the current knowledge can guide and inform us. Maria Housden (2002) came to the same conclusion. Writing about decisions made regarding cancer treatments administered to her young daughter in the last year of her life, she concluded that we make the best decision we can with the information we have at the time, and if, in some future moment, a different path or course of action is revealed, we should not torture ourselves with ‘if only’ but comfort ourselves with the knowledge that we did our best with what we knew then.

However, sometimes new knowledge emerges that casts shadows over our current thinking and practice whilst change is still viable. In this circumstance, it can take great courage to step outside our entrenched ideas and practices, to let go and adapt appropriately to our new insights. More than that, it can take enormous compassion both to ourselves and others to know, like Maria Housden (2002), that we did the best we could with the information we previously had.

In writing this book, and looking back over my years in special education, I had a great need for this self-forgiving compassion. As previously outlined, for me knowledge flows in many streams. Academics of old had great faith in book-bound knowledge, and to me it seems that academics today have transposed this faith to research, journal articles, peer reviews and such like. Meanwhile scientists hold fast to objectivity, generalisation and external truths to be known and applied reliably. For them there is stability and comfort in believing that generalisable ‘truths’ are still out there, knowable, repeatable, measurable and predictable. However, during my life, while I experienced the flow of these traditional streams of knowledge, I also was fortunate to experience other sources of knowledge. In the main there are two streams of knowledge that informed my knowing in my work within the field of autism. These are the emotional and embodied streams of knowledge which I believe are both attributes of the one river of personal knowledge.

In England in the 1960s I was a child threatened with segregation for being ‘feeble’. I was a child briefly removed from her family for fear that my absence from school was some cultural misdemeanour rather than the result of ill-health. In the care of the authority I became ill and was returned to my family with their word thankfully vindicated. However, the stream of emotional knowing that sources back to those scant weeks drove passionately and enthusiastically my commitment to inclusive education both as a professional and a voluntary activist within the disability movement for many, many years. It was also fed by knowledge that having been returned to my family they were urged to send me to a special school where all my medical needs could be catered for. However, the advice of my doctor and head teacher prevented my family from complying with this recommendation. Had they, I came to recognise, I would never have become a teacher, because the regime in those settings was then medical rather than educational. In fact, my common retort as a young teacher to those favouring special schools was that someone in 1960s Britain drew a line excluding those with chronic ill-health and a high incidence of school absence from ordinary classrooms; who wanted at that time to be the one drawing the line?

However, over the years of my classroom practice the struggle for inclusive education gained ground. What was once seen as eccentric and idealistic became ‘politically correct’. These days it is as hard for those who argue for special schools as it once was for those, like me, who demanded inclusive mainstream schooling for all. Against this new tide that I once rode, I need the courage to admit that another stream of knowing has informed and influenced my thinking and practice. This stream of knowing is called embodied knowledge. Its source is more than 30 years of dedicated, reflective experience and creativity in education, and it screams that ‘melting-pot’ inclusion does not meet the diverse needs of children.

The ‘melting-pot’ classroom is a hard place for both students and teachers. It is a place of normalisation. Regardless of a plethora of governmental initiatives, normalisation requires a ‘dumbing down’ reductionism. For example, in the late 1990s in England the numeracy and literacy hours took the vast sea of students and divided them, yet again, into ability groups within classes. Also, they attempted to make a profitable use of different learning needs and styles. What they did not do was develop a flexible, empathetic response and a celebration of difference. They presented an ‘idiot’s guide’ to teaching, providing primary teachers with such banal information as to hold ‘big’ books so that a class of students could see them. In the step-by-step guide to teaching they showed little trust in embodied knowledge and experience, and inspired little creative or reflective thinking in primary teachers. However, creative and reflective teaching practices are necessary if teachers are to adapt their individual classrooms to the different strengths and needs of each year’s students across a vast curriculum and its ever-expanding syllabi.

Meanwhile in Ireland the revised primary curriculum, launched in 1999, placed significant emphasis on active and collaborative learning and peer teaching. Visiting vertically grouped/cross-age primary classrooms in Ireland, one can only praise and admire the dogged determinism and conscientious effort made by teachers to make this work across the whole primary age range, all levels of ability and all learning styles and needs.

However, it is my contention that it does not and cannot. Even in the clothing industry a one-size-fits-all approach has been dogged by problems and failures. How and why do we expect the perfect uniqueness of every child to fit neatly and comfortably into one pedagogical conception of education and the nature of learning?

My embodied knowledge has influenced my emotional knowing; my emotional knowing has guided my embodied knowledge. Together, as the sum of my personal knowledge, they now argue for an alternative educational model. They do not argue for segregation but adaptation; adaptation that is not of the child to the classroom, but of the classroom to the child. They do not argue for a teaching approach, but for a teaching philosophy that is not about fitting any child to any one form of teaching, but one that draws upon different educational philosophies and approaches as they suit the learning strengths and needs of individual children. This may seem like idealism, and I suspect and fear that many mainstream teachers will view it as onerous and impossible, asking in disbelief, ‘How can one adult adapt one classroom to accommodate the different learning strengths and needs of so many divergent learners?’

My response is that inclusion is not simply about being together in one place at one time following the same or similar curriculum. Inclusion is about parity of respect and value. Therefore, for me, parity is not a generalisation but a unique understanding and appropriate adaptation to individual strengths and needs. Conflictingly, reductionism to ‘one size fits all’ ultimately disrespects and devalues all, as it espouses a common denominator that exists more in theory than practice; more in numbers than with human beings. Therefore, beyond the simple adaptations that I argue every classroom needs to accommodate the strengths and needs of students with autism and visual learners, I also voice the proposal that if we are to treat all children with parity and respect within our schools there is a clear and urgent need to have classrooms in which the dominant teaching approach is not a language-based, collaborative learning one. There are children who work and learn best on their own. There are children who explore ideas best in a visual form rather than the spoken one. There are children who actively learn and work best in structured environments within time frames and routines. Not all these extra-ordinary children have autism. So, back to my initial question: ‘What if we got it wrong?’

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