For community | Longitudinal Studies

What is a longitudinal study?

A longitudinal study follows the same people over time to see how things change.

The Autism CRC Longitudinal Studies

The three studies undertaken by Autism CRC cover different life stages, with some common data points:

  • Longitudinal Study of Australian Students (LASA) – explores academic achievement and participation in autistic children aged 4-5 years and 9-10 years.
  • Study of Australian School Leavers with Autism (SASLA) – explores the health and wellbeing young autistic adults aged 15-25 with and without intellectual disability.
  • Australian Longitudinal Study of Autistic Adults (ALSAA) – explores the health and wellbeing of autistic adults 25 years and over.

Who participated in the Longitudinal Studies

LASA participants include autistic school-aged children 4-5 years and 9-10 years. The study also includes insights from parents, teachers, school principals, and some students themselves.

SASLA participants include young autistic adults aged 15-25 with and without intellectual disability. The study also includes non-autistic young adults, parents and carers.

ALSAA participants include autistic adults 25 years and over. The study also includes non-autistic adults, families and carers.

How the collected data is protected

Data from surveys and questionnaires are stored in secure databases, with access managed by Autism CRC. Researchers are not given access to information that identifies participants when receiving access to data.

Who decides how the information can be used

The Autism CRC Access Committee considers all Longitudinal Studies data access applications.

The Committee consists of at least six people appointed by Autism CRC and includes researchers, a biobank expert and at least one member of the autistic community.

To be considered, applications must specify how the proposed research will have a clear potential benefit to the autistic and autism communities.

Access applications must also be approved by a Human Research Ethics Committee before any samples or data are shared with researchers.

Autism CRC encourages research guided by community-driven priorities to ensure outcomes that directly help autistic individuals and their families by considering all applications on their potential benefit, scientific merit and the impact on the Longitudinal Studies.

The benefits of these studies

Having access to stored data means that research to improve the quality of life and opportunities for autistic people can be done more efficiently.

Infographic showing a flow of improving data and samples. First, obtain informed consent. Second, collect biospecimens, behavioural, environmental and health data. Third, process and store data and samples in the Biobank. Fourth, data and samples are made available for research. There's a back and forth arrow between the third and fourth step, showing how the data is improved with use. Infographic showing a flow of improving data and samples. First, obtain informed consent. Second, collect biospecimens, behavioural, environmental and health data. Third, process and store data and samples in the Biobank. Fourth, data and samples are made available for research. There's a back and forth arrow between the third and fourth step, showing how the data is improved with use.

Autism CRC's Longitudinal Studies provide valuable insights into the characteristics and wellbeing of autistic individuals across different age groups and time points. This has enabled rich datasets to emerge providing the opportunity for national and international researchers to gain a broader understanding of key health, wellbeing, education and employment experiences.

Recruiting research participants and collecting data can be time consuming and costly for both the participants and research organisations. For example, it took more than six years to recruit and follow participants in the LASA study, but this data can then be used for countless studies, now and into the future.

Each time a study is completed, new data generated is added back into the Longitudinal Studies data bank, so that it continues to grow and evolve for the benefit of future generations.

What research has been approved and what we hope to learn

Data collected from these studies were intended to support the development of approaches to improve the health and wellbeing of autistic people. They are helping us to better understand autism, co-occurring conditions and wellbeing in areas such as:

  • school participation
  • academic achievement and participation
  • health and health services
  • mental health
  • employment
  • quality of life
  • activities of daily living
  • intellectual disability
  • physical activity
  • aging
  • wellbeing of carers.

You can see the full list of research outputs on the the project page of each study:

So far, these studies have led to hundreds of research papers that give important insights into the health and wellbeing of autistic people. This information has helped shape policies, improve practices, and create useful resources for autistic individuals, their families, teachers, and health professionals.

What community involvement in the Longitudinal Studies looks like

Autism CRC is committed to focusing on research that directly helps autistic individuals and their families.

As part of this commitment, Autism CRC established the Australian Autism Research Council (AARC) to identify autism research priorities in Australia. Community consultation involving autistic individuals and their families and identified 10 priority areas for autism research in Australia.

Autism CRC encourages research that is guided by these community priorities.

Additionally, the Autism CRC Access Committee, consisting of at least six people, will always include at least one member of the autistic community to ensure community representation.

Thank you to our participants

We would like to give a heartfelt thank you to all our participants. Your contributions are helping to fulfil our vision of equity and opportunity for autistic people.