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