The Identification Of Autistic Adults' Perception Of Their Own Diagnostic Pathway: A Research Dissertation submitted for the Degree of Master of Autism at Sheffield Hallam University - Softcover

Morris, Rod

Softcover

ISBN 10: 1490766081 ISBN 13: 9781490766089

Verlag: Trafford, 2015

Inhaltsangabe

This research investigates the processes of the identification of Autistic adults, with the view of many seeking a diagnosis being unaware of what the process entails or potential effects so as to make more informed decisions. Additionally, individuals who have been through these processes often do not have a benchmark with which to measure their experiences. This ethical research uses emancipatory and participatory methods, the literature review is rigorous, for example obtaining rare historical documents by Hans Asperger and Leo Kanner, whilst the research is within the framework of autism as a concept and how these have very real consequences for individuals and families to which this pertains. Many participants voiced their feelings of the need for further research particularly in the areas of identity and perception, with recognition that where neurological differences are present there needs to be different approaches to mental health as well as the importance of post-identification support.

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The Identification of Autistic Adults' Perception of their Own Diagnostic Pathway

A Research Dissertation submitted for the Degree of Master of Autism at Sheffield Hallam University

By Rod Morris

Trafford Publishing

Copyright © 2015 Rod Morris
All rights reserved.

ISBN: 978-1-4907-6608-9

Contents

Abstract, ix, 
Acknowledgements, xi, 
List of Figures, xiii, 
Foreword by Dr. Emma Goodall, xv, 
Foreword by Manuel F. Casanova, MD, xvii, 
CHAPTER 1: INTRODUCTION, 1, 
CHAPTER 2: LITERATURE REVIEW, 9, 
CHAPTER 3: METHODOLOGY AND METHODS, 39, 
CHAPTER 4: FINDINGS AND DISCUSSION, 51, 
CHAPTER 5: CONCLUSION/SUMMARY OF RECOMMENDATIONS 107, 
LIST OF REFFERENCES CITED, 119, 
APPENDICES, 133, 

CHAPTER 1

Introduction

1.1 Options for How to Read this Document

As this thesis involves perception, and as this will include the perception of the reader, there are two methods which can be taken when approaching this text:

1. Read in the traditional style (from the beginning through to the end)

2. Read first from Appendix F onwards (interview data), form conclusions and opinions based on the data, then read this document from the beginning.

These two different approaches are designed to facilitate how different perceptions may differ from the author and also how the readers' perceptions may differ. Fuller explanations for this approach will become clear within this document.

1.2 Information Regarding the Direct Quotes of Dr. Hans Asperger

The author of this thesis has secured by commission fresh translations of Dr. Hans Asperger's writings. The original German papers were obtained from various worldwide locations and were translated in full by Dr. Herbert Murbach into English. Herbert had no knowledge of autism or Asperger's prior to translation:

I am a retired teacher of a secondary school in Germany and I have lived in England for a few years. I studied at a University in Germany, which included maths, biology, theology, philosophy, psychology, pedagogy, physics and chemistry. Besides my professional work as a teacher I studied (home study) in the field of "carer for older people" especially the medical aspects. I wrote many tests and examined test papers for students. My partner was a teacher in an institute for the education of carers. Of course all important literature must be analysed - so for example I have the ability to translate English scientific text into German language and vice versa.

(Dr. Herbert Murbach, 2013. Pers. Comm.)

1.3 Language, Terms and Accessibility

Inline with Article 1 of The Universal Declaration of Human Rights that "All human beings are born free and equal in dignity and rights" (United Nations, 1948, online), the basis of this thesis and indeed the principles set herein, will be presented in the framework of universal language and dignity for all persons. In an attempt to be as sensitive as possible, this researcher will also be using reflective perspectives and language, which is inline with this.

Therefore, overt medical and academic language will be avoided, except in quotes where this will be unavoidable. Throughout the document, terms such as "Predominant Neurotype" (PNT) (Cornwell and Beardon, 2007/2008, p.181), "neurodiversity" (Singer, 1999, p.64), diagnosis and identification will also be used. The use of images will also be incorporated so as to communicate complex concepts in an accessible form.

In terms of using this research for further study and reference, the author asserts that referencing the direct quotes of participants either from the Appendices or the main body of this thesis is strictly prohibited. These are largely due to ethical issues, which will be outlined within the ethics section of this document.

On a technical note and in the interest of research ethics, the author has obtained as many originally sourced reference materials as is possible, including the works of Hans Asperger, thereby limiting the use of multiple impressions and interpretations upon the core sources for this thesis, thus limiting bias. Furthermore, regarding Asperger's papers, it was felt that having a suitably qualified professional without much prior knowledge about autism translating such texts might bring to light fresh translations and interpretations of his works, and the use of fully translated papers (rather than partial translations that are present in the academic field) one may gain a deeper perspective of Asperger's knowledge regarding autism.

1.4 Rationale and Objectives

With the Autism Act (2009) Section 15(5) as legal legislation on the Statue Book and the first ever disability-specific law to be passed in England, calling for:

(a) the provision of relevant services for the purpose of diagnosing autistic spectrum conditions in adults;

(b) the identification of adults with such conditions;

(c) the assessment of the needs of adults with such conditions for relevant services;

(d) planning in relation to the provision of relevant services to persons with autistic spectrum conditions as they move from being children to adults;

(e) other planning in relation to the provision of relevant services to adults with autistic spectrum conditions;

(f) the training of staff who provide relevant services to adults with such conditions;

(g) local arrangements for leadership in relation to the provision of relevant services to adults with such conditions.

(Great Britain, Autism Act 2009, online)

And for

there to be a clear pathway to diagnosis in every area and local areas should appoint a lead professional to develop diagnostic and assessment services. The pathway should be from initial referral through to assessment of needs. Diagnosis should lead to a person-centred assessment of need and should be recognised as a catalyst for a carer's assessment. Assessment of eligibility for care services cannot be denied on the grounds of the person's IQ. Any assessment of needs should be carried out by a professional who has a good understanding of autism and reasonable adjustments made to the process to enable the adult with autism to take part fully. All NHS practitioners should be able to identify signs of autism and refer for assessment and diagnosis if necessary. They should also then be able to understand how to adapt their behaviour and communication for a patient with autism.

(Department of Health, 2014, p.47)

Combined with

The clear vision is that: All adults with autism are able to live fulfilling and rewarding lives within a society that accepts and understands them. They can get a diagnosis and access support if they need it, and they can depend on mainstream public services to treat them fairly as individuals, helping them make the most of their talents.

(Department of Health, 2014, P.4)

Although "Each area should put in place a clear pathway for diagnosis of autism, from initial referral through to assessment of needs" (Department of Health, 2010, p.16), even though

the diagnoses of an autistic spectrum disorder are broadly applied to children who have widely divergent life histories, although different labels are applied to differentiate children based on age of onset and severity of impairments (Nadesan, 2005, p.10),

the only officially recognized guide for adults is that of the NICE (2012) guideline. Additionally, research on the lived process of adult diagnosis and its...

Details zur Ausgabe

• Verlag: Trafford
• Erscheinungsdatum: 2015
• Sprache: Englisch
• ISBN 10: 1490766081
• ISBN 13: 9781490766089
• Einband: Taschenbuch
• Anzahl der Seiten: 386
• Kontakt zum Hersteller: Nicht verfügbar
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