Autism Spectrum Disorder in Mid and Later Life

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Autism and Enablement

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of related interest

A Guide to Mental Health Issues in Girls and

Young Women on the Autism Spectrum
Diagnosis, Intervention and Family Support
Dr Judy Eaton
ISBN 978 1 78592 092 9
eISBN 978 1 78450 355 0

Autism and Everyday Executive Function

A Strengths-​Based Approach for Improving Attention, Memory,
Organization and Flexibility
Paula Moraine
ISBN 978 1 84905 725 7
eISBN 978 1 78450 089 4

Sensory Perceptual Issues in Autism and Asperger

Syndrome, Second Edition
Different Sensory Experiences –​Different Perceptual Worlds
Olga Bogdashina
Foreword by Manuel F. Casanova
ISBN 978 1 84905 673 1
eISBN 978 1 78450 179 2

Autism Spectrum Disorder in Mid and Later Life

Edited by Scott D. Wright, PhD
ISBN 978 1 84905 772 1
eISBN 978 1 78450 037 5
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Autism and
Enablement
Occupational Therapy Approaches to
Promote Independence for
Adults with Autism

Matt Bushell, Sandra Gasson and Ute Vann

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Every effort has been made to trace copyright holders and to obtain their permission for
the use of copyright material. The author and the publisher apologize for any omissions
and would be grateful if notified of any acknowledgements that should be incorporated
in future reprints or editions of this book.
First published in 2018
by Jessica Kingsley Publishers
73 Collier Street
London N1 9BE, UK
and
400 Market Street, Suite 400
Philadelphia, PA 19106, USA
www.jkp.com
Copyright © Matt Bushell, Sandra Gasson and Ute Vann 2018
All rights reserved. No part of this publication may be reproduced in any
material form (including photocopying, storing in any medium by electronic
means or transmitting) without the written permission of the copyright owner
except in accordance with the provisions of the law or under terms of a licence
issued in the UK by the Copyright Licensing Agency Ltd. www.cla.co.uk or in
overseas territories by the relevant reproduction rights organisation, for details
see www.ifrro.org. Applications for the copyright owner’s written permission to
reproduce any part of this publication should be addressed to the publisher.
Warning: The doing of an unauthorised act in relation to a copyright work
may result in both a civil claim for damages and criminal prosecution.
Library of Congress Cataloging in Publication Data
Names: Bushell, Matt, author. | Gasson, Sandra, author. | Vann, Ute, author.
Title: Autism and enablement : occupational therapy approaches to promote
independence for adults with autism / Matt Bushell, Sandra Gasson and Ute
Vann.
Description: London ; Philadelphia : Jessica Kingsley Publishers, 2018. |
Includes bibliographical references and index.
Identifiers: LCCN 2017028842 | ISBN 9781785920875 (alk. paper)
Subjects: | MESH: Autism Spectrum Disorder--rehabilitation | Occupational
Therapy--methods | Rehabilitation Research | Adult
Classification: LCC RC553.A88 | NLM WM 203.5 | DDC 616.85/88206--dc23 LC
record available at https://lccn.loc.gov/2017028842
British Library Cataloguing in Publication Data
A CIP catalogue record for this book is available from the British Library
ISBN  978 1 78592 087 5
eISBN 978 1 78450 348 2
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The term Enablement is crucial to our understanding of the needs of ­autistic

people…[t]‌
­ he emphasis being on person-​ led support rather than what
­professionals think a person might need. It is important to discuss options
which can be employed by an individual to aid self-​ management and
well-​being w ­ ithout the need for direct support from another person. An
important c­ onclusion made [in this book] is that some people will need help and
support from others at times, whilst others will need ongoing support; different
support may be needed at different times. Autism is a life-​long condition but it is
vital that any assessment of needs is individually based and focusses on strengths
and the person’s well-​being and self-​management.
Judith Gould
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Contents

Foreword������������������������������������������������������������������������������������������������������������9
Peter Vermeulen

Acknowledgements ������������������������������������������������������������������������������������������10

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . 11
Matt Bushell

1. Understanding Autistic Spectrum Conditions and

their Impact on the Individual . . . . . . . . . . . . . . . . 15
Matt Bushell
Supporting high-​functioning autistic people 19
Considering ASCs and co-​existing conditions 23
Recognising the different needs of females on the spectrum 27
Exploring the link between the theory and impact of ASCs 29
Bibliography 33

2. Identifying the Need for an Enablement Intervention . . . . 36

Ute Vann
The pre-​2009 policy context 36
National autism policy and the social care legislative framework 39
Establishment of the Kent ASC Team 41
Bibliography 59

3. An Occupational Therapy-​Led Enablement Intervention . . . 62

Sandra Gasson
Role of occupational therapy 62
Bibliography 94

4. Specialist Enablement Research Results and Analysis . . . . . 100

Ute Vann and Sandra Gasson
Research results 100
Vignettes 122
Case studies 124
Bibliography 142
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5. Key Learning and Recommendations. . . . . . . . . . . . . 143

Matt Bushell, Sandra Gasson and Ute Vann
Research objectives and results 144
Key findings 145
Key learning and recommendations 147
Using the Enablement framework as a key foundation for intervention 147
Final comments 173
Bibliography 175

Index����������������������������������������������������������������������������������������������������������������177
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Foreword

Children with autism grow up and become adults. Autism does not
disappear at the age of 18. Everyone knows that. Yet, after 75 years
of autism research, most interventions still aim at children and young
people. Little, too little, is known about strategies for supporting adults
with autism in their struggle for a happy, productive and meaningful life.
Autism and Enablement addresses a major need of parents and professionals
for useful tools and strategies to support adults with autism.
According to self-​determination theory, human beings have three
innate fundamental needs that, if met, enable them to grow, develop and
flourish. These three needs –​competence, relatedness and autonomy –​
are universal, and there is thus no reason to believe that people with
autism do not have them. In this book, Matt Bushell, Sandra Gasson
and Ute Vann present a comprehensive research and evidence-​based
foundation for assessing the needs of and supporting (young) adults
with autism. Using occupational therapy tools for assessment, training
and support, the foundation aims at enhancing the competence,
autonomy and relatedness of adults with autism in a way that is unique
because it takes a contextualised and bottom-​up –​or ‘feet on the
ground’ –​rather than a generic and top-​down, approach to increasing
the independence and well-​being of adults with autism. The Kent ASC
Team’s foundation is person-​centred and the support offered is based
on a detailed assessment of not only an individual’s needs, interests and
goals in life, but also their unique living environment, including the
often overlooked sensory aspects of that environment.
With its unique combination of research data and illustrative case
examples, Autism and Enablement is a rich source of information and
inspiration for everyone (not only occupational therapists but also other
professionals, parents and even policy makers) looking for ways to increase
the independence, relatedness and competence of young adults with autism.
Peter Vermeulen

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Acknowledgements

We would like to say thank you for the assistance and support of
Anna Goode and Triangle Consulting, Abigail Vincent, Gerry Harding
and Sonia Stevens at Kent County Council for their technical support;
Tabitha Hunter for her clinical occupational therapy support; Jenny
Beecham for her valuable research advice; Charlotte Morgan, Sue
Eltringham and Nikki Webster (Kent County Council) for their
excellent delivery of the Enablement intervention; and the wider Kent
Autistic Spectrum Conditions Team for their wider contribution. For
helping to steer our research, we would like to thank the Enablement
Research Focus Group members: Sarah Kean, Julie Beadle-​Brown,
Denise Eden-​Green, Cliff Robins, Nicola Waddington, Tracy Mapp,
Carol Carter and Austen Hughes. Thanks to Beryl Palmer, P. J.
Hughes, Mohammed Rizwan, Judith Gould, Peter Vermeulen and
Chris Barson for commenting on drafts; Lisa Clark and Sarah Hamlin
of Jessica Kingsley Publishers for their patience and support, and
Beryl Palmer, our manager, with Anne Tidmarsh, Director, Older
Persons and Physical Disability (Kent County Council) for believing
in practitioners to deliver innovation.
The authors acknowledge the support of their colleagues and
of Kent County Council in allowing these research findings to be
shared. The views and conclusions expressed are, however, those of
the authors alone.

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Introduction
Matt Bushell

Jenny, a married woman in her mid-​twenties, worked in a qualified professional

role before resigning after a mental health regression. She was also pregnant with
her first child. Throughout her life she had struggled with a feeling of difference
and found daily living tasks overly complicated and social environments
overwhelming. Her mother had to visit to help with routine tasks and found
herself in the role of carer rather than mother and soon-​to-​be grandmother.
Jenny’s mother cleaned the house weekly because of Jenny’s aversion to the smell
of bleach, amongst other issues.
Jenny was diagnosed with autism, following which the diagnostic team,with
her agreement, made a referral to the Kent ASC Team. The team completed a
social care assessment in accordance with the Care Act 2014, which led to her
agreeing to be part of an A‘ SC Enablement’ trial –​a 12-​week provision led by a
specialist occupational therapist. As part of the Enablement trial Jenny undertook
sensory and motor processing assessments, which revealed the significant
difficulties she experienced in daily living and functioning. These difficulties
appeared to be in juxtaposition to her educational and vocational attainments.
Jenny was highly motivated and took on all the advice and assistance provided,
enhancing her existing strengths and learning new skills. One day during the
Enablement period, Jenny texted her Enablement support worker to state that she
had cleaned her whole house independently. She had done so primarily by using
noise-​cancelling headphones to remove one of her senses (hearing) to allow her to
accommodate her aversion to the smell of cleaning products. Her advancements
in overall functioning, which became increasingly efficient and within timescales
set for each task, had a massive impact upon her life and well-​being.
Jenny’s autistic condition continues to pose daily challenges for her but she
feels she is better equipped to deal with them, whilst her mother enjoys just
coming round for tea.

The desire for independence is at the very heart of the human

condition. The thought of asking others for support can be a

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12 Autism and Enablement

frightening prospect to many and could be perceived by some as a

loss of control. For someone on the autistic spectrum, this can be
a particularly undesirable prospect: the very act of engaging with
unfamiliar people –​however kind and helpful these people might
be –​is often to be avoided and can be easily understood within a
general understanding of the condition.
The reality, though, is that we all need support at various times in
our lives; often, in the case of family support, we might rely heavily
upon those family members but do not acknowledge it as support
or envisage how things might be if that support ever ceased. Even
the most independent person will on occasions need a greater level
of support, perhaps during a time of significant change or during a
transitional stage in their life. This situation is particularly true for
people who are higher functioning on the autism spectrum who can
struggle with significant change as an accepted trait of their condition.
They can often be overlooked in relation to their need for support,
because they may have strengths in some areas but are then assumed
to have strengths in all; that if they can do ‘that’ task, then they can,
according to normal logic, do ‘these other’ tasks too. Unfortunately,
the situation is not that simple but this assumption can be very
disabling –​unnecessarily so. If Jenny had been assessed by someone in
a non-​specialist ASC team, it is likely that they would have dismissed
her inability to manage those tasks of daily living; the assessment
would have been insufficiently detailed to reveal that Jenny’s motor-​
processing skills fell within the range of a person with a learning
disability –​despite the fact that she was a qualified professional.
During the past few decades a person in need of formal care and
support from the state has had to agree to a ‘needs’ assessment. Need
can often be a professional judgement based upon a practitioner’s
normalised understanding of what might be required by a person with
a certain condition and within a certain support network. The assessor
might complete the assessment in partnership with the individual,
then rationalise with them about what support would be reasonable
to provide to meet that need – along with the outcomes they hope to
achieve. For instance, a young person leaving the family home for the
first time might need three calls a day, equalling 21 hours inclusive
per week. This would seem entirely reasonable in support of such a
life-​changing event (and may reduce over time as the person settles).
In reality, however, such a formulaic approach might not always work
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Introduction 13

well when considering ASC support because the needs of people on

the spectrum are so individual. Two people, for example, could present
in very similar ways and have similar support networks in place but
actually require very different levels of assistance.
For this reason, during the second year of the Kent ASC team’s
existence, we questioned how we could extend our range of assessment
and provision to better empower the clients we are charged to support
to develop self-​management skills and a greater feeling of well-​being.
We sought to develop a methodology for individually assessing the
impact of a life-​long autistic condition, and thereby provide support
and recommendations regarding how each person could achieve their
desired personal outcomes.
With few specialist adult social work teams for clients with
higher-​functioning autism, the Kent ASC team considered that they
were well placed to consider such transformative work. What became
progressively more clear as the team progressed past their thousandth
client assessment, however, was that, although their specialist ASC
assessment was proving highly beneficial, it did not provide a
sufficient picture of a person’s functional abilities within their usual
contexts; that is, it did not ‘unpick’ why certain tasks were difficult for
the person to achieve and what could mitigate such difficulties.
It was by good fortune that our team included an occupational
therapy-​qualified case manager/social worker who was able to trial
some specialist ASC approaches using her occupational therapy skills
and training. Adult services social workers in Kent have for many
years worked in tandem with occupational therapists, and over the
past decade have utilised Enablement interventions for other adult
client groups. Occupational therapists have also worked successfully
in the short term with children with autism who have a learning
disability or mental health issue to promote their independence.
Occupational therapists specialise in working within a person’s social
and occupational environments and contexts. Such an approach
marries well with supporting clients with an ASC because, though
a lifelong condition, individual presentations of ASC can certainly
be affected by the social context of the individual and, additionally,
how they interact with and relate to their social world, including in
terms of their sensory preferences.
We therefore set about securing funds to trial a specialist ASC
Enablement intervention, centring on occupational therapy but