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

Publisher: Trafford, 2015

Synopsis

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research uses emancipatory and participatory methods, the literature review is rigorous, for example obtaining rare historical documents by Hans Asperger and Leo Kanner, whilst the research is within the framework of autism as a concept and how these have very real consequences for individuals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.

About this title

Excerpt. © Reprinted by permission. All rights reserved.

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 impact appears very limited at present especially with older adults (Piven and Rabins, 2011, p.21512155; Happe and Charlton, 2011, p.70-78; NICE, 2012, p.108), women, transgender people and black and minority groups (NICE, 2012, p.107-109). Because "autism is a lifelong condition" (NICE, 2012, p.18); and that "it is important that autism is seen not only as a medical diagnosis for which the NHS has responsibilities, but also as a social care responsibility" (NICE, 2012, p.21) and in consideration that

The rights of people with autism has become an important social issue and professionals need to be sensitive to the view that many individuals on the autism spectrum regard themselves as an excluded minority whose rights have been overlooked by a 'neurotypical' majority (see Chapter 4). Alongside using medical diagnostic terminology to define themselves, they also use the key concept of 'neurodiversity' to remind society that there are many different routes along which the brain can develop, that one is not necessarily better or worse than another, and that society has to adapt to make space for this diversity (NICE, 2012, p.21),

for the individual, the process could be seen by some as an identification process rather than just a diagnostic one as "this is the generation that missed the opportunity to be identified and understood" (Attwood, 2008, p.10). Another consideration is that "however autism is perceived, it is unarguable that all autistic people are "human beings born free and equal in dignity and rights"" (Beardon and Chown, 2013, p.6). However, as autism is currently diagnosed by the identification of certain traits the scope for observational bias is vast and as "autism involves both difference and disability, in that the diagnosis of autism is only made when the person is experiencing difficulties arising from their difference" (NICE, 2012, p.22), the consequences of framing already vulnerable people around purely deficit based medical models as listed in the DSM-5 (2013) as used in the United States of America and ICD-10 (2010) as used in the United Kingdom, how this is communicated to the individual and possibly those around them may have very real consequences. An additional aspect is that of the implications for research, especially as common sense would suggest, that at the heart of how autism is understood is that of the diagnostic process/criteria and whom is deemed to reach the criteria, especially as

the process of identification and assessment is well understood but is limited by the availability of well-validated tools for case identification and the lack of specialist services to undertake the necessary assessments (NICE, 2012, p.24).

However, as all of the different identification tools used in clinical assessment, "demonstrate that despite guidelines there is still no single clear manner of identification" (Beardon, 2014. Pers. Comm.); as the following from the NICE guideline illustrates:

To aid more complex diagnosis and assessment for adults, consider using a formal assessment tool, such as:

• the following tools for people who do not have a learning Disability:

- The Adult Asperger Assessment (AAA; includes the Autism Spectrum Quotient [AQ] and the Empathy Quotient [EQ])25

- the Autism Diagnostic Interview – Revised (ADI-R)26

- the Autism Diagnostic Observation Schedule – Generic (ADOS-G)27

- the Asperger Syndrome (and high-functioning autism) Diagnostic Interview (ASDI)28

- The Ritvo Autism Asperger Diagnostic Scale – Revised (RAADS-R)29

• The following tools in particular for people with a learning Disability:

- The ADOS-G

- The ADI-R.

5.4.7.5 To organise and structure the process of a more complex assessment, consider using a formal assessment tool, such as the Diagnostic Interview for Social and Communication Disorders (DISCO)30, the ADOS-G or the ADI-R.

(NICE, 2012, p.137).

In summary:

Having reviewed the formal assessment instruments, the GDG [Guideline Development Group] did not judge that any single instrument had sufficient properties to recommend its routine use in the assessment of adults with autism over any other instrument (NICE, 2012, p.131).

Additionally, aspects relating to how the individual's perceptions of their adult diagnosis as well as how others in turn will perceive that individual could have additional consequences. This is likely to ultimately affect how autism is understood and researched. It would seem apparent that with autism being constructed from an observational basis, any post diagnostic support may or may not be currently based on the individual's experiences of this world but by the interpretation and perception of the observer of that person, which in return may affect the support provided or not provided to that person. In essence, this research aims to examine the perception of autistic adults' and their own diagnostic journey. The main research aims is to examine the perceptual experiences of autistic adults regarding;

(a) Why they sought a diagnosis;

(b) How they felt about the diagnostic procedure;

(c) What impact the diagnosis has had on the understanding of who they are.

An additional objective of this research is to provide a document which can help guide and better inform those who are seeking, or are considering seeking a diagnosis and for those who have already been through the process, a benchmark with which to measure their own pathway through diagnosis. The authors' view is that it is pivotal that any assessment of this nature is accurate as to the persons' experiences and that there are standards of practice which do not impede an individuals' life, but to have meaning and purpose for a positive way forward. In this sense this could also be a guide for clinicians and diagnosticians on which to measure how they practice in this area.

CHAPTER 2

Literature Review

2.1 Introduction

This Literature Review will focus on the history and different schools of thought and perception up until the present in the 'Autism Constructs' sub-section. Ethical issues in autism research will follow this and how the tools and approaches the clinician uses affects the outcomes of identification/diagnosis. With the wide myriad of research available do any of us truly understand autism? Does the process of identification lead to further disability in itself? A pertinent question is that is autism a modern-day pseudonym for witchcraft? Does the awareness of being recognized as being different lead to further disablement? Is it something so unstructured that it is not possible to research it? Has the way autism been defined breaking the Equality Act (2010) and human rights law to live as a person is? Is the construct of autism just as problematic of society's views of difference? These questions, in part will be highlighted. However, the reader will ultimately be required to apply critical thinking in order to provide the answers and solutions on the understanding that:

People diagnosed with autism and AS do experience difference and are experienced as different. These differences are both produced and rendered visible by complex institutional matrices including built environments, social institutions and professional role identities, and cultural practices and values. Yet, individuals who are singled out and whose behaviors are rendered meaningful by the diagnosis of autism are not passive agents

(Nadesan, 2005, p.210)

2.2 Autism Constructs

"If the doors of perception were cleansed everything would appear to man as it is: Infinite. For man has closed himself up, till he sees all things through narrow chinks of his cavern" (Blake, 1790, p.14).

What follows is an analysis of a selection of original research papers from different professionals, which have largely formed the basis for how autism is recognized and seen today in the United Kingdom. The timeline of the papers selected begin from the early twentieth century through to more recent studies and hypotheses by examining the perceptions of autism by these different authors.

Over the course of time, there have been major changes in ideas on the nature of autistic conditions. Before there was any understanding of the relationship of brain and behavior, causes were suggested – 'a changeling child' or 'demonic possession' (Wing, 2002, p.21). In 1487 a manual called Malleus Maleficarum, known as the 'handbook of the witch-hunters' and written by two German Catholic friars, Jakob Sprenger and Heinrich Kramer, stated that children with impairments were born to mothers who were involved with witchcraft and sorcery. Disabled people provided living proof of Satan's existence and of his power over humans. Thus, visibly impaired children were seen as 'changelings', the Devil's substitutes for human children. The book explained how to identify witches by their impairments, by 'evidence' of them creating impairments in others, or by their giving birth to a disabled child. It stated that 'creatures can be made by witches, although they necessarily must be very imperfect creatures and probably in some way deformed'

(Quarmby, 2011, p.32).

One could observe this early diagnostic manual to formally label people as being 'different' was produced by Jakob Sprenger and Heinrich Kramer in 1487. One wonders how much has changed and how much has remained the same, especially when considering Blake's (1790, p.14) quote and that man "sees all things through narrow chinks of his cavern", one is led to the different perspectives and theories regarding each others' differences - this may explain why

In the history of autism studies, expertise has been claimed by many differing academic schools of thought, practitioners, parents, quacks and so on. Yet, the one voice that has been traditionally silenced within the field is that of autistic people themselves (Milton, 2014, p.7).

"We now know that it was probably a Russian neurology scientific assistant, Dr Ewa Ssucharewa, who first published a description of children that we would describe today as having Asperger's Syndrome" (Attwood, 2008, p.36). In her 1926 paper that appeared in the 'Monatsschrift für Psychiatrie und Neurologie 60:235261' entitled 'Die schizoiden Psychopathien im Kindesalter' (Wolff, 1996), the female assistant examined six boys aged between 2 and 14 years of age over a two-year period. She provided for each case detailed generational family history, using a multi-dimensional approach including details regarding their physiology, neurology and psychology. Although she used the accepted subsumed term 'autistic thinking', she did not use the over-arching term 'autism', as this was later extrapolated as a separate entity by Leo Kanner (1943) and Hans Asperger (1944), and not formally entered into the diagnostic classification system until 1980 with DSM III (APA, 1980, p.86-92).

(Continues...)

Excerpted from The Identification of Autistic Adults' Perception of their Own Diagnostic Pathway by Rod Morris. Copyright © 2015 Rod Morris. Excerpted by permission of Trafford Publishing.
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Edition details

• Publisher: Trafford
• Publication date: 2015
• Language: English
• ISBN 10: 1490766081
• ISBN 13: 9781490766089
• Binding: Paperback
• Number of pages: 386