Index
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
This content is currently only available as a PDF
Citation
Bennett, M. and Goodall, E. (2022), "Index", Addressing Underserved Populations in Autism Spectrum Research, Emerald Publishing Limited, Leeds, pp. 217-221. https://doi.org/10.1108/978-1-80382-463-520221002
Publisher
:Emerald Publishing Limited
Copyright © 2022 Matthew Bennett and Emma Goodall. Published under exclusive licence by Emerald Publishing Limited
INDEX
Aboriginal and Torres Strait Islanders (ATSI)
, 78
Academic Autism Spectrum Partnership in Research and Education (AAS-PIRE)
, 147
Adolescents, social skills programs
, 68
African American autistics
Aboriginal and Torres Strait Islanders (ATSI)
, 78
Autism and Developmental Disabilities Monitoring (ADDM) Network
, 75–77, 86
autism awareness campaigns
, 81
Autism research community
, 80–81
Black and Hispanic autistics
, 77
ethnic diversity
, 81
ethnic minorities
, 77–79, 81
Focus on Autism and Other Developmental Disabilities (FOCUS)
, 78–79
Interactive Autism Network (IAN)
, 77–78
International Meeting For Autism Research (IMFAR)
, 80
Journal of Autism and Developmental Disorders (JADD)
, 78–79
race/ethnicity
, 87–88, 91, 93–94
racial disparities
, 80–81
Alternative data collection methods
, 126
American Psychiatric Association (APA)
, 2
American Statistical Association (ASA)
, 183
Asperger syndrome
, 41–43
Assessment team
, 107
Authenticity
, 119–120
Autism advisory panel
, 121
Autism and Developmental Disabilities Monitoring (ADDM) Network
, 5, 53, 66, 75–77, 86
advantages of
, 54
autism prevalence rates
, 54
data collection process steps
, 55
goals of
, 53–54
Surveillance Year
, 54–62
Autism awareness campaigns
, 81
Autism Diagnostic Observation Schedule Module 4 (ADOS Module 4)
, 29–30
Autism prevalence rates
, 54
Autism research community
, 80–81
Autism Science Foundation
, 30–31
Autism spectrum
academics
, 6
American Psychiatric Association (APA)
, 2
Autism and Developmental Disabilities Monitoring (ADDM) Network
, 5
autistic females, increased recognition of
, 2
autistics
, 6–7
autistic seniors. See Autistic seniors
category condition
, 3
Centers for Disease Control and Prevention (CDC)
, 5–6
co-morbid conditions
, 3
Danish Psychiatric Register (DPR)
, 4
developmental disorder
, 3–4
diagnosis
, 108–109
lifelong condition
, 2–3
parents
, 7
personal concerns
, 13
professionals
, 7
scholars
, 12–13
students
, 7
Autism spectrum disorder (ASD)
, 29
Autism: The International Journal of Research and Practice
, 28
Autistic adults
, 101–102
Autistic characteristics, subtle presentation of
, 30
Autistic diagnosis
, 33–34
Autistic Disturbances of Affective Contact
, 1
Autistic females
, 215
autism spectrum disorder (ASD)
, 29
autistic characteristics, subtle presentation of
, 30
challenges
, 32–33
diagnosing females
, 29
female-specific barriers
, 31
healthcare system
, 33–34
increased recognition of
, 2
insensitive diagnostic instruments
, 29–30
literature about
, 30–34
males
, 27–29
medical professionals
, 29
recommendations
, 32–33
research
, 27, 29, 32–33
Autistic patients, diagnosing
assessment team
, 107
Autism Spectrum Diagnosis
, 108–109
autistic adults
, 101–102
diagnostic accuracy, improving
, 103–104
DSM-5 diagnostic criteria
, 107–108
ethnicity
, 109
families
, 106–107
healthcare system
, 99–100
health professionals
, 104
inconsistent/unorthodox diagnostic procedures
, 100
males and females
, 105–106
medical professionals
, 102–103
medical school training
, 101
parents of autistic children
, 101
problematic autistic diagnostic procedures consequences
, 101–103
race
, 109
research community
, 103
strategies
, 103–110
telehealth services
, 110
wait-time
, 104–105
Autistic psychopathy
, 1
Autistics
, 6–7
Autistic samples
, 62–63
Autistic seniors
children with
, 14–15
cognitive abilities
, 17–18
diagnosing infants
, 14–15
employment
, 18–19
healthcare
, 19
mental health
, 18
nursing homes
, 19–20
palliative care
, 19–20
physical health
, 16–17
psychological well-being
, 18
public funding
, 15–16
research
, 15–16
transport usage
, 19
Autistics proportion
, 52–53, 66
Autistischen psychopathen
, 1
Black and Hispanic autistics
, 77
Breaks and quiet rooms
, 126
Caregiver burden
, 67
Centers for Disease Control and Prevention (CDC)
, 5–6
Cognitive abilities
, 17–18
Community-based participatory research (CBPR)
, 147
Co-morbid conditions
, 3
Consent process
, 125–126
Cooperative Research Centre for Living With Autism (Autism CRC)
, 146–147
Danish Psychiatric Register (DPR)
, 4
Data collection
, 126–134
alternative data collection methods
, 126
breaks and quiet rooms
, 126
honorarium
, 133–134
interviews
, 126–127, 133
post-data collection considerations
, 134
process steps
, 55
Developmental disorder
, 3–4
Diagnosing females
, 29
Diagnosing infants
, 14–15
Diagnostic accuracy, improving
, 103–104
DSM-5 diagnostic criteria
, 107–108
Emotional distress
, 134–140
Employment
, 18–19
Ethnicity
, 87–88, 91, 93–94, 109
ethnic diversity
, 81
ethnic minorities
, 77–79, 81
False assumptions
, 120
Fathers raising autistic children
examples
, 41–44
mothers
, 39–40
parental advocacy
, 46
parents’ experiences of caring
, 45–46
paternal experiences
, 40–44
psychological and physical health
, 44–45, 47
raising experiences
, 46–47
research, paternal involvement in
, 45
strategies
, 47–48
Fathers strategies
, 47–48
Female-specific barriers
, 31
Fletcher-Watson seminars
, 119
Focus on Autism and Other Developmental Disabilities (FOCUS)
, 78–79
Griffiths Mental Development Scale – Extend Revised (GMDS-ER)
, 52
Healthcare system
, 19, 33–34, 99–100
Healthcare utilisation
, 69–70
Health professionals
, 104
Honorarium
, 133–134
Inconsistent/unorthodox diagnostic procedures
, 100
Insensitive diagnostic instruments
, 29–30
Intellectual disabilities
Autism and Developmental Disabilities Monitoring (ADDM) network. See Autism and Developmental Disabilities Monitoring (ADDM) network
autistic samples
, 62–63
autistics proportion
, 52–53, 66
caregiver burden
, 67
defining
, 52
goals of
, 53–54
Griffiths Mental Development Scale – Extend Revised (GMDS-ER)
, 52
healthcare utilisation
, 69–70
intellectual quotient (IQ)
, 52, 58–59, 62
mental health
, 68
potential participants small pool
, 67
prevalence of
, 52–66
relatives raising autistic children
, 68–69
social skills programs, adolescents
, 68
Intellectual quotient (IQ)
, 52, 58–59, 62
Interactive Autism Network (IAN)
, 77–78
International Meeting For Autism Research (IMFAR)
, 12, 80
Intersectionality
, 101
Interviews
, 126–127, 133
Irreproducible research, financial costs of
, 178–179
Journal of Autism and Developmental Disorders (JADD)
, 78–79
Low participant involvement
, 144–145
Lucidity
, 142
Medical professionals
, 29, 102–103
Medical school training
, 101
Mental health
, 18, 68
Molecular Autism
, 28
Mothers, autistic children
, 39–40
Non-autistic researchers
, 121
Nursing homes
, 19–20
Palliative care
, 19–20
Parents
, 7
autistic children
, 101
experiences of caring
, 45–46
parental advocacy
, 46
Participant’s confidentiality loss
, 143–144
Participatory research practices
authenticity
, 119–120
autism advisory panel
, 121
consent process
, 125–126
co-presenters of
, 137–139
cultivating
, 118–119
data collection. See Data collection
defining
, 117–121
description
, 118
emotional distress
, 134–140
false assumptions
, 120
families
, 135–136
Fletcher-Watson seminars
, 119
funding in grants to
, 140–141
inconclusive/incomplete results
, 145
ineffective healthcare choices
, 142–143
low participant involvement
, 144–145
lucidity
, 142
maintaining respect
, 118–119
non-autistic researchers
, 121
participant’s confidentiality loss
, 143–144
places
, 124–125
policies
, 146–147
pre-data collection considerations
, 121–126
promotional incentives
, 145–146
researcher misconceptions
, 144
research protocol
, 149–150
research’s ignorance
, 145
stakeholder engagement, allocating funding for
, 120–121
stigma
, 140
study advertising
, 124
therapeutic misconceptions
, 142
time lag
, 141
uncertainty
, 141
Paternal experiences
, 40–44
Peer review process
, 191–193
consequences with
, 191–192
explanation of
, 191
improving
, 192–193
problems
, 191–192
P-hacking
, 182–186
defining
, 182
solutions to
, 182–186
Physical health
, 16–17
Post-data collection considerations
, 134
Potential participants small pool
, 67
Pre-data collection considerations
, 121–126
Predatory journals
, 188–191
impact of
, 188
overview
, 188
solutions to
, 188–191
Problematic autistic diagnostic procedures consequences
, 101–103
Professionals
, 7
Promotional incentives
, 145–146
Psychological and physical health
, 44–45, 47
Psychological well-being
, 18
Publication bias
research
, 180
solutions to
, 180–181
Public funding
, 15–16
Qualitative research
, 194
Race
, 87–88, 91, 93–94, 109
racial disparities
, 80–81
Relatives raising autistic children
, 68–69
Reproducibility crisis
, 215
consequences of
, 178–179
factors and solutions to
, 179–194
financial costs of irreproducible research
, 178–179
overview of
, 177–178
peer review process
, 191–193
P-hacking
, 182–186
predatory journals
, 188–191
publication bias
, 180–181
qualitative research
, 194
scientific discoveries, public’s confidence in
, 178
Research
collaborations
, 13, 146–147
community
, 103
ignorance
, 145
misconceptions
, 144
protocol
, 149–150
Scientific discoveries, public’s confidence in
, 178
Social skills programs, adolescents
, 68
Stakeholder engagement, allocating funding for
, 120–121
Stigma
, 140
Stockholm Youth Cohort
, 52
Students
, 7
Surveillance Years
, 54–62
2000
, 54–55
2002
, 55–56
2004
, 56–57
2006
, 57
2008
, 57–58
2010
, 58–59
2012
, 59–60
2014
, 60–61
2016
, 61–62
Telehealth services
, 110
Time lag
, 141
Transport usage
, 19
Uncertainty
, 141
Wait-time
, 104–105
- Prelims
- Chapter 1 Introduction
- Chapter 2 Exploring the Needs of Autistic Seniors
- Chapter 3 Exploring the Lack of Research About Autistic Women
- Chapter 4 Addressing the Lack of Research About Fathers Raising Autistic Children
- Chapter 5 Examining the Needs of Autistics With Intellectual Disabilities
- Chapter 6 Researching African American Autistics
- Chapter 7 Important Knowledge for Diagnosing Autistic Patients
- Chapter 8 Participatory Research Practices With Autistics
- Chapter 9 The Reproducibility Crisis and Autism Spectrum Research
- Chapter 10 Conclusion and Final Comments
- Index