Our research

The Cooperative Research Centre for Living with Autism (Autism CRC) is the world’s first national, cooperative research effort focussed on autism. It provides the national capacity to develop and deliver evidence-based outcomes through our unique collaboration with the autism community, research organisations, industry and government.

The Autism CHAP

Led by past postdoctoral research fellow, Dr Anna Urbanowicz, we adapted the Comprehensive Health Assessment Program (CHAP) for autistic adults and adolescents with intellectual disability. 

GP Professional Development – check

The Royal Australian College of General Practitioners (RACGP) produces a Continuing Professional Development (CPD) activity called check. These are peer-reviewed clinic cases, written by expert clinicians. Each unit includes four to six clinical cases with answers, followed by 10 multiple choice questions (MCQs), as well as references and resources. Our team contributed three cases on autistic individuals.

Autism HealthPathways 

Lead by the Mackay Health Pathways team, we worked collaboratively to develop a suite of clinical pathways for primary care clinicians about autism. 

The Pathways launched in August 2019 and are available across the HealthPathways community in Australia, New Zealand and the UK.

In 2024 we were commissioned by the Queensland Metnal Health Commision to review the evidence around trauma and trauma-informed care for people with disabilities, including intellectual disability.

You can read our report here.

We want to explore the experiences of attending general practitioner (GP) practices from the perspectives of people with intellectual disability.

The findings from this project will help to support the development of resources for practice nurse education under a larger project. These resources are to improve health outcomes for people with intellectual disability.

Our free, self-paced  ABLEx Series aims to improve the health of people with intellectual disability around the world. It can be accessed here: https://www.edx.org/xseries/intellectual-disability-healthcare. More than 120 contributors from 22 countries have provided content.  The courses are self-paced and free. The courses are tiered to fit with Years 1, 2, 3 of any health, medical, or related degree. They can also be used for workforce education. Anyone can do the courses – they are open to everyone!

Adolescents with intellectual disability have been shown to have high levels of unrecognised disease and inadequate health screening/promotion than the general population. We aimed to improve the healthcare of these adolescents. We undertook a parallel-group cluster randomised controlled trial of a combined health and educational intervention

The Ask Project was taught in special schools and special education units in mainstream schools in South-East Queensland. It was based on the “Ask Health Diary”, a copy of which was provided to families who were also asked to take their young person for a comprehensive health review using the CHAP tool. While some teachers thought the diary was too difficult for those students with more severe disabilities, our findings indicate that the Ask Health Diary provides a sound curriculum framework  for teachers, adolescents and parents/carers to work together to promote self-determination and better health outcomes for young people who have an intellectual disability.

The In-Reach Project was commissioned and funded by the Mental Health Alcohol and Other Drugs Branch, Queensland Health. It was commissioned to provide targeted support including the assessment and / or provision of management advice for individuals with intellectual and developmental disability (IDD) who are clients of Queensland Health’s Mental Health Services (QH MHS) and identified by the MHS as complex. The project was initially commissioned to run for 6 months and was then extended to 9, 12 and ultimately 18 months, completing on 30 June, 2020.

The project added significantly to the level of knowledge around the cohort of clients with IDD who access QH MHS, including an insight into their level of disability, the prevalence of autism spectrum disorder in addition to intellectual disability, and further insights into important sub-groups of Aboriginal clients and clients subject to Forensic Orders.

The Comprehensive Health Assessment Program (CHAP) has been shown to be effective in improving health outcomes for people with intellectual disability, especially in neglected health areas such as immunisation, vision and hearing checks.

For more than ten years, participants of the original CHAP randomised trial have received an annual or biennial health assessment.

By extracting health information from CHAP booklets and databases we will be able to quantify the incidence of disease and health-related conditions experienced by this vulnerable population and also determine the pattern of clinical action after CHAP receipt to evaluate the long-term impact of the CHAP.

People with intellectual and developmental disability living with diabetes experience a number of challenges in self-managing their diabetes. A key barrier is lack of educational and self-management resources explaining diabetes and diabetes self-management in an accessible way as this population group experience cognitive and communication differences. There is also a lack of accessible information for support people (e.g., family members, paid support workers) about providing support to someone with intellectual and developmental disability living with diabetes.

In 2005, QCIDD developed Diabetes to the Point to fill this gap. The project has sonce been updated to reflect more current information. This website holds Easy Read information diabetes information for people with intellectual and developmental disabilities, as well as information for support people and health professionals.

The current design of public space limits access by people with neurodiversity (intellectual disability, autism, mental illness, acquired brain injury, and ageing associated). Navigation can be enhanced through development of design principles for public spaces for people with neurodiversity or sensory differences. Miriam Taylor and Cindy Nicollet from QCIDD in collaboration with A/Prof Kathi Holt-Damant from QUT in 2012 undertook a sensory mapping pilot in Logan with a small project fund from Logan City Council. The project utilised a mixed-method approach that included an international sensory profile, an urban experience survey and observational recordings during an urban walk in Logan Central (south of Brisbane, Australia).

New collaborations are emerging with Logan Regional Development interested architects and app designers. We have developed project plans for an app to be piloted, a website to be called “NeurodiverCity”, and comprehensive research which includes autonomic measures.

The aim of the Passports project was to evaluate the impact of a health and psychosocial intervention package for adult prisoners being released to the community in Queensland, on:

• Post-release physical and mental health, and health risk behaviours, within the first six months of release;
• Access to and use of health services, during the first two years post-release;
• The incidence and timing of recidivism within two years of release

Baseline data was collected 1,328 participants recruited into the cohort from seven Queensland prisons. The project involved three follow-up interviews approximately one, three and six months post-release. Medicare conducted the record linkage for nearly 1200 prisoners from the Passports cohort. The Australian Institute of Health and Welfare Have provided mortality data using the National Death Index (NDI) and the National Mortality Database (NMD).

In 2010 CIs Kinner and Lennox, along with other investigators, were awarded a large NHMRC project grant to build on the Passports project through prospective record linkage and abstraction of prison health records, and to establish a similar cohort (N=1,000) in Western Australia. This project is establishing the largest and most comprehensive cohort of ex-prisoners ever studied, internationally.

This study is focussing on health outcomes and health service utilisation among adult ex-prisoners in two states that incarcerate 44% of Australia’s Indigenous prisoners. Data has been extracted from the QLD Health prison medical records of 1063 prisoners. Data analysis of the rich Passport dataset is continuing and including the linked data from the HipAus follow-up study. The results have been the subject of many papers and presentations, a number being specifically on prisoners with intellectual disability.

This study aimed to understand the transition out of prison for people with intellectual disability across two Australian states: Queensland and Western Australia. We interviewed 17 service providers to seek their perspectives about where gaps in the transition out of prison exist and which specific steps can be taken to address unmet need.

This arena is complex and our results indicate that there are clear differences between policy, service delivery objectives, and actual delivery of services to target recipients.