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Prelims

Matthew Bennett (Independent Researcher, Australia)
Emma Goodall (University of Southern Queensland, Australia)

Addressing Underserved Populations in Autism Spectrum Research

ISBN: 978-1-80382-464-2, eISBN: 978-1-80382-463-5

Publication date: 7 July 2022

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Citation

Bennett, M. and Goodall, E. (2022), "Prelims", Addressing Underserved Populations in Autism Spectrum Research, Emerald Publishing Limited, Leeds, pp. i-xxiii. https://doi.org/10.1108/978-1-80382-463-520221001

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Emerald Publishing Limited

Copyright © 2022 Matthew Bennett and Emma Goodall. Published under exclusive licence by Emerald Publishing Limited

Half Title Page

Addressing Underserved Populations in Autism Spectrum Research

Title Page

Addressing Underserved Populations in Autism Spectrum Research: An Intersectional Approach

by

Matthew Bennett

Independent Researcher, Australia

And

Emma Goodall

University of Southern Queensland, Australia

United Kingdom – North America – Japan – India – Malaysia – China

Copyright Page

Emerald Publishing Limited

Howard House, Wagon Lane, Bingley BD16 1WA, UK

First edition 2022

Copyright © 2022 Matthew Bennett and Emma Goodall. Published under exclusive licence by Emerald Publishing Limited.

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No part of this book may be reproduced, stored in a retrieval system, transmitted in any form or by any means electronic, mechanical, photocopying, recording or otherwise without either the prior written permission of the publisher or a licence permitting restricted copying issued in the UK by The Copyright Licensing Agency and in the USA by The Copyright Clearance Center. Any opinions expressed in the chapters are those of the authors. Whilst Emerald makes every effort to ensure the quality and accuracy of its content, Emerald makes no representation implied or otherwise, as to the chapters' suitability and application and disclaims any warranties, express or implied, to their use.

British Library Cataloguing in Publication Data

A catalogue record for this book is available from the British Library

ISBN: 978-1-80382-464-2 (Print)

ISBN: 978-1-80382-463-5 (Online)

ISBN: 978-1-80382-465-9 (Epub)

Dedication

We would like to dedicate this book to those who are interested in learning about the autism spectrum. After reading this book we hope that you will develop an awareness of the current limitations in our knowledge about the autism spectrum. We also hope you will learn and implement strategies for conducting research that can be replicated and research practices that respect the rights and dignity of autistics.

List of Tables

Table 3.1. Research Priorities, Challenges, Recommendations for Autistic Females and Implications of Recommendations of Research.
Table 4.1. Examples of the Main Themes From Burrell, Ives, and Unwin's (2017) Study.
Table 4.2. Examples of the Main Themes From Cheuk and Lashewicz's (2016) Study.
Table 4.3. Examples of Main Themes From Pottas and Pedro's (2016) Study.
Table 5.1. Availability and Distribution of Intelligence Quotient Scores Among Children Aged 8 Years With Autism Spectrum Disorder (ASD) – Autism and Developmental Disabilities Monitoring Network, 10 Sites, United States, 2016.
Table 5.2. Number and Percentage of Children With Co-occurring Intellectual Disability Among Children Aged 4 Years With Autism Spectrum Disorder, by Site, Sex and Year – Early Autism and Developmental Disabilities Monitoring Network, Four Sites, United States, 2010, 2012, and 2014.
Table 5.3. Children Aged 4 Years With Autism Spectrum Disorder and Co-occurring Intellectual Disability, by Site and Sex – Early Autism and Developmental Disabilities Monitoring Network, Four Sites, United States, 2016.
Table 1. Estimated Prevalence of Autism Spectrum Disorders (ASDs) Among Children Aged 8 Years, by Race/Ethnicity – Autism and Developmental Disabilities Monitoring (ADDM) Network, Six Sites, United States, 2000.
Table 2. Estimated Prevalence of Autism Spectrum Disorders Among Children Aged 8 Years, by Site and Race/Ethnicity – Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2002.
Table 3. Number and Percentage of Children Aged 8 Years, by Race/Ethnicity and Site – Autism and Developmental Disabilities Monitoring Network, Eight Sites, United States, 2004.
Table 4. Estimated Prevalence of Autism Spectrum Disorders Among Children Aged 8 Years, by Sex and Race/Ethnicity – Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2006.
Table 5. Estimated Prevalence of Autism Spectrum Disorders per 1,000 Children Aged 8 Years, by Sex and Race/Ethnicity – Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2008.
Table 6. Estimated Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years, by Sex and Race/Ethnicity – Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2010.
Table 7. Estimated Prevalence of Autism Spectrum Disorder Among 1,000 Children Aged 8 Years, by Race/Ethnicity – Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2012.
Table 8. Estimated Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years, by Race/Ethnicity – Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014.
Table 9. Estimated Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years, by Race/Ethnicity – Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016.
Table 10. Prevalence of Autism Spectrum Disorder Among Children Aged 4 Years, by Race/Ethnicity – Early Autism and Developmental Disabilities Monitoring Network, Seven Sites, United States, 2010, 2012 and 2014.
Table 11. Prevalence of Autism Spectrum Disorder Among Children Aged 4 Years, by Race/Ethnicity – Early Autism and Developmental Disabilities Monitoring Network, Six Sites, United States, 2016.
Table 7.1. Diagnostic Agreement Between Health Professionals.
Table 8.1. Description of the Seminars in Fletcher-Watson et al.’s (2019) Study.
Table 8.2. The Inclusive Research Protocol Outlined by Arnold et al. (2019).
Table 8.3. Autism CRC Recommendations for Focus Groups and Interview Sessions.
Table 8.4. Providing Research Results to Individuals on the Autism Spectrum and Their Families.
Table 8.5. Including Autistics as Co-presenters of Research.
Table 9.1. Examples of Misleading Language in Peer-Reviewed Papers and Revisions Using Language of Clarity.
Table 9.2. Guidelines for Successful Submissions of Qualitative Manuscripts to the Journal of Autism and Developmental Disorders.

List of Graphs

Graph 5.1. Intelligence Quotient (IQ) of Children Aged 8 Years With an Autism Spectrum Disorder for Whom Psychometric Test Data Were Available, by Site and Sex – Autism and Developmental Disabilities Monitoring Network, Three Sites, United States, 2000.
Graph 5.2. Percentages of Children Aged 8 Years With and Without Cognitive Impairment, by Intelligence Quotient (IQ) Score, Site and Sex – Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2002. Includes only sites with cognitive functioning data for >80% of cases.
Graph 5.3. Intelligence Quotient (IQ) of Children Aged 8 Years With an Autism Spectrum Disorder (ASD) for Whom Psychometric Test Data Were Available, by Site, Sex and IQ Score – Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2006. Sites with psychometric test data on >70% of children identified with an ASD were included.
Graph 5.4. Most Recent Intelligence Quotient (IQ) as of Age 8 Among Children Identified With Autism Spectrum Disorders (ASDs) for Whom Psychometric Test Data Were Available, by Site and Sex – Autism and Developmental Disabilities Monitoring Network, Seven Sites, United States, 2008. F = female; IQ = intelligence quotient; M = male. N = 1,981; Includes sites having information on intellectual ability available for at least 70% of children who met the ASD case definition.
Graph 5.5. Most Recent Intelligence Quotient Score as of Age 8 Among Children With Autism Spectrum Disorder (ASD) for Whom Test Data Were Available, by Sex and Site – Autism and Developmental Disabilities Monitoring Network, Seven Sites, United States, 2010. F = female; IQ = intelligence quotient; M = male. Includes sites that had intellectual ability data available for ≥70% of children who met the ASD case definition.
Graph 5.6. Scores of Most Recent Intelligence Quotient Tests for Children Identified With Autism Spectrum Disorder (ASD) for Whom Test Data Were Available – Autism and Developmental Disabilities Monitoring Network, Nine Sites, United States, 2012. ADDM, Autism and Developmental Disabilities Monitoring Network; E + H = education and health records; F = female; IQ = intelligence quotient; M = male. Includes sites having information on intellectual ability available for ≥70% of children who met the ASD case definition (N = 3,353, excluding unknown IQ).
Graph 5.7. Most Recent Intelligence Quotient Score as of Age 8 Among Children With Autism Spectrum Disorder for Whom Test Data Were Available, by Sex and Site – Autism and Developmental Disabilities Monitoring Network, Nine Sites, United States, 2014. ADDM = Autism and Developmental Disabilities Monitoring Network; F = female; IQ = intelligence quotient; M = male. Includes nine sites (Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, New Jersey, North Carolina and Tennessee) that had intellectual ability data available for ≥70% of children who met the ASD case definition (n = 3,714).

List of Figures

Figure 5.1. Five Steps in the Data Collection Process for the ADDM Network.
Figure 9.1. Estimated financial costs of preclinical research that is irreproducible in the United States.
Figure 9.2. Flowchart of the Manuscripts Handled by Miyakawa for Molecular Brain.
Figure 9.3. The Relationship Between Researcher, Journal and Readership.

List of Acronyms

AASPIRE

Academic Autism Spectrum Partnership in Research and Education

ADDM Network

Autism and Developmental Disabilities Monitoring Network

ADOS Module 4

Autism Diagnostic Observation Schedule Module 4

APA

American Psychiatry Association

APC

Article Processing Charge

AQ

Autism Quotient

ARC

Australian Research Council

ASA

American Statistical Association

ASD

Autism Spectrum Disorder

ATSI

Aboriginal and Torres Strait Islander

AUD

Australian Dollar

Autism CRC

Cooperative Research Centre Living with Autism

BASP

Basic and Applied Psychology

CBPR

Community-based participatory research

CDC

Centers for Disease Control and Prevention

CI

Confidence Interval

CIHR

Canadian Institutes of Health Research

DASH-II

Diagnostic Assessment for the Severely Handicapped – II

DPR

Danish Psychiatric Register

DSM-5

Diagnostic and Statistical Manual of Mental Disorders – Fifth edition

DSM-III

Diagnostic and Statistical Manual of Mental Disorders – Third edition

DSM-IV

Diagnostic and Statistical Manual of Mental Disorders – Fourth edition

DSM-IV-TR

Diagnostic and Statistical Manual of Mental Disorders – Fourth edition – Text Revision

FOCUS

Focus on Autism and Other Developmental Disabilities

GMDS-ER

Griffiths Mental Development Scale – Extend Revised

IAN

Interactive Autism Network

ID

Intellectual Disability

IMFAR

International Meeting for Autism Research

INSAR

International Society for Autism Research

IQ

Intelligence Quotient

JADD

Journal of Autism and Developmental Disorders

Leiter-R

Leiter International Performance Test – Revised

NHMRC

National Health and Medical Research Council

OAJ

Open Access Journals

PDD

Pervasive Developmental Disorders

PDD-NOS

Pervasive Developmental Disorders – Not Otherwise Specified

PJ

Predatory Journals

QRPs

Questionable Research Practices

RASD

Research in Autism Spectrum Disorders

SBJ

Subscription-Based Journals

About the Authors

Matthew Bennett holds a PhD in Disability Studies from Flinders University, South Australia. His PhD was about the life experiences of adults who live on the autism spectrum. Specifically, he explored the education, depression, employment and intimate relationships of adults with Asperger's syndrome. He has also lectured in Disability Studies at Griffith University, Queensland. Matthew is an active advocate for the rights of people on the autism spectrum.

Emma Goodall, PhD, is an autism author, researcher and consultant in South Australia. She is reviewing programmes and developing and implementing research-based policy and programmes to enable students on the autism spectrum to flourish. Emma combines her professional and academic skills and knowledge with her lived experience of Asperger's to help people understand what it means to be on the autistic spectrum and how different life is for those on and not on the spectrum. Emma is passionate about helping families and schools to facilitate success for children on the spectrum. Emma lives in Adelaide with her dog. She is also on the executive committees of the Australian Society for Autism Research and the Autistic Self Advocacy Network of Australia, New Zealand and Oceania.

Choice of Terminology

There is an ongoing debate in the field of autism spectrum research, as well as in the broader field of disability studies, as to what is the most appropriate use of terminology to address members of the autistic community (Tepest, 2021; Vivanti, 2020). Some people prefer using person-first language (i.e. people on the autism spectrum) while others prefer using identity-first language (i.e. autistic person). Throughout this book we use identity-first language since contemporary research has shown that most autistics prefer this language convention (Bury, Jellett, Spoor, & Hedley, 2020; Kenny et al., 2016). Furthermore, it is our belief, as autistic researchers, that since the autism spectrum is a fundamental and an inseparable part of a person's identity that the word ‘autistic’ should be used instead of ‘person with autism’ or ‘person on the autism spectrum’.

Foreword

Emma and Mathew's book has come at an important time for autism research. While there has always been a wealth of research focusing on autism, respectful and engaging research with the autistic and autism communities has, until recently, been lacking. What this book does is focus on diversity within and between autistic people, tackling important points of intersectionality. In doing so this text addresses myths and stereotypes, inviting readers to think about key issues such as ageing, gender, ability, and race, when reflecting on research practices.

An important contribution of the book is its appeal to a diverse readership. It is written in a way that considers issues that are important for autistic people, parents, professionals and researchers. This strength in diversity of readership potential is a clear signal that research needs to be a collaborative endeavour. For too long we have focused on a particular kind of ‘expert’, and it is only when we focus on empowering and co-produced work can we consider things from a range of perspectives, leading to clearer understandings. Emma and Matthew's book invites readers to reassess what their taken-for-granted position of ‘expert’ looks like and what research topic is focused on.

The reflections on the replicability crisis in psychology highlight the diversity of humans and the important influences that context, culture and historical understandings have on both the focus of research, the design framework adopted and our interpretation of the findings. It does matter what position we come from as this will influence not only the questions that we ask but also how we ask them and what we do with the answers. We have long known that research is not a neutral endeavour, and some people's interests are often better served than others. By placing a clear lens on under-researched populations, Emma and Matthew highlight the need for research to reflect the priorities of the autism and autistic communities. Additionally, the book provides practical guidance for non-researchers to engage critically with research, enabling judgements to be formed about the quality of research, allowing the reader to make future considerations about research they may encounter beyond this text.

I hope you enjoy the thought-provoking issues raised – the book encourages us all to ask questions to further knowledge, while critically considering findings in our interpretations of these.

Professor Charlotte Brownlow

University of Southern Queensland, Australia

References

Bury et al., 2020 Bury, S. M. , Jellett, R. , Spoor, J. R. , & Hedley, D. (2020). “It defines who I am” or “it's something I have”: What language do [autistic] Australian adults [on the autism spectrum] prefer? Journal of Autism and Developmental Disorders. doi:10.1007/s10803-020-04425-3

Kenny et al., 2016 Kenny, L. , Hattersley, C. , Molins, B. , Buckley, C. , Povey, C. , & Pellicano, E. (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism: The International Journal of Research and Practice, 20(4), 442–462. doi:10.1177/1362361315588200

Tepest, 2021 Tepest, R. (2021). The meaning of diagnosis for different designations in talking about autism. Journal of Autism and Developmental Disorders, 51(2), 760–761. doi:10.1007/s10803-020-04584-3

Vivanti, 2020 Vivanti, G. (2020). Ask the editor: What is the most appropriate way to talk about individuals with a diagnosis of autism? Journal of Autism and Developmental Disorders, 50(2), 691–693. doi:10.1007/s10803-019-04280-x

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