Table 2

Measurements included in the ALSAA surveys

Measure/domainSelf-reportInformant reportCarer
Demographics and personal characteristics
 Basic demographics
 (age, sex, ethnicity, English speaking status)
 Other demographics
 (education, occupation*, family and living conditions, income)
Autism characteristics
 The Autism Quotient-Short† (AQ-Short)67
 Repetitive Behaviours Questionnaire-2 adult version63
 The Glasgow Sensory Questionnaire95
 The Intolerance of Uncertainty Scale-1296
Health and well-Being
 Medical history
 Medication profile
 Smoking, alcohol and illicit drug use*
 The Patient Health Questionnaire-15 (PHQ-15)97
 Medical outcomes study Short Form Health Survey-1298
 The Composite Autonomic Symptom Score-3199
 Pittsburgh Sleep Quality Index100
 Flinders Fatigue Scale101
Mental and emotional health
 DSM-5 Dimensional Anxiety Scales: Generalised Anxiety Disorder-Adult (DSM-5)102
 The PHQ-961
 The Warwick Edinburgh Mental Well-being Scale103
 The New General Self-efficacy Scale104
 The Emotion Regulation Questionnaire105
Developmental Behaviour Checklist-Adolescent/Adult version Revised106
 The Brief COPE107
 Memory Complaint Questionnaire108
Relationships and social networks
 UCLA Loneliness Scale-8109
 Supports and networks*
 The Social Support Questionnaire110
Activities, participation and quality of life
 World Health Organisation Quality of Life (WHOQOL) -BREF111
 Waisman Activities of Daily Living Scale112
 WHO Disability Assessment Schedule113
 Vocational index for adults with autism114
 Special abilities and interests‡
 Leisure activities participation
 Leisure Satisfaction Scale115
 Driving and transport
Service usage
 Client Service Receipt Inventory116
 Health service seeking behaviour
 Early intervention service history
 Justice system contact
 Preventative health screening
Caring
 Positive Affect Index117
 Caregiver Activity Survey-Intellectual Disability118
 Zarit Burden Interview119
  • *Based on questions from the National Health Survey of Mental Health and Well-being (Slade, Johnston, Oakley Browne, Andrews and Whiteford, 2009).

  • †A 28-item parent-carer report adaptation using items from the AQ-Adolescent (Baron-Cohen, Hoekstra, Knickmeyer and Wheelwright, 2006) was used for the Informant-Report Survey.

  • ‡Based on questions from the Interactive Autism Network (https://iancommunity.org/).

  • ALSAA, Australian Longitudinal Study of Adults with Autism.