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Australian Longitudinal Study of Adults with Autism (ALSAA)
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Sample details

The ALSAA aimed to identify and describe the comprehensive and unique profiles of autistic adults and compare them with adults without autism in Australia. These data were intended to support the development of approaches to improve the health and well-being of autistic adults. There were three participant groups: autistic adults, carers and family members of autistic adults, and a comparison group of adult community members who were not on the autism spectrum. Approximately 300 autistic adults (including 42 with informant reports), 100 carers and 150 non-autistic participants completed baseline surveys, beginning in 2015. Participants were followed up around two and a half years later. An additional 300 participants were included as a cross-sectional group at the second data collection from 2017 to 2021.

Study design
Cohort

Number of participants at first data collection

295 (autistic adult participants)

146 (non-autistic adult participants)

102 (carers)

Age at first data collection

25 - 80 years (autistic adult participants)

25 - 79 years (non-autistic adult participants)

21 - 78 years (carers)

Participant year of birth

Varied (autistic adult participants)

Varied (non-autistic adult participants)

Varied (carers)

Participant sex
All

Representative sample at baseline?
No

Sample features

Adults
Autism Spectrum Disorder (ASD)
Caregivers
Older and elderly people
Dataset details

Country

Australia

Year of first data collection

2015

Primary Institutions

University of New South Wales (UNSW)

Links

autismcrc.com.au/our-work/adulthood/australian-longitudinal-study-autistic-adults-alsaa-25-years

autismcrc.com.au/sites/default/files/reports/3-013_ALSAA_final-report.pdf

doi.org/10.1016/j.jth.2021.101117

Funders

Autism CRC

Ongoing?
No

Data types collected

mentalHealthData
qualitativeData
Quantitative data collection
  • Self-report questionnaire – online
  • Self-completed questionnaire – paper or computer assisted
Qualitative data collection
  • Qualitative survey
Neuroimaging data collection
  • None
Linked or secondary data
  • None
Features

Engagement

  • Community engagement
  • Patients, service users, lived experience involvement
  • Participant or community advisory groups
  • Keywords

    Autism and Autism-like conditions
    Caregiving
    Mental health
    Neurodivergence
    Relationships
    Service use
    Work and employment
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