Researchers at the UNSW and the Autism CRC are seeking volunteer research participants to learn about life in adulthood for people on the autism spectrum.
We are looking for both autistic AND non-autistic adults who are 25 years or older, as well as carers / close family members of autistic adults to take part in a questionnaire study. Click here to register to participate.
- Main Flyer
- Flyer with pull tabs for notice boards
- Community volunteers needed
- ALSAA Autism and Intellectual Disability Flyer
What does it involve?
If you decide to take part, you would:
- Complete a questionnaire either online or via a paper copy.
- The questions will be about many aspects of life including mental and physical health, employment and other day occupations, behaviour, emotions, coping, memory, friendships and health service utilisation.
- Time taken to complete the questionnaires may vary greatly, but the majority may take between 2 to 3 hours. You don’t have to do it all at once.
- Complete a second questionnaire about two years later if you want to.
Benefits for adults on the spectrum
Currently, understanding of life in adulthood for people on the autism spectrum is very limited. This has significant implications for the day-to-day life of individuals on the spectrum with services and the general public lacking in awareness and understanding of the specific needs of autistic adults. Results from this study will be shared with autistic individuals, relevant organizations, clinicians, policy-makers and other researchers. We hope the information from this study will help guide the formation of better policies, improved service provision and generally a better understanding of life in adulthood for people on the autism spectrum. Additionally, the results of this study will be used by other researchers within the Autism CRC to develop interventions and tools which will aim to improve many facets of life for this population.
If you would like more information or are interested in being part of the study, please follow the link below:
OR contact us:
Publications arising from the ALSAA
Aging well on the autism spectrum: the perspectives of autistic adults and carers
This paper involves interviews with autistic adults and carers regarding what it means to “age well” on the autism spectrum. Eight key factors were found to be important as autistic adults age: “myself” as an individual, “being autistic” specifically, “lifestyle and living well”, “being supported” both formally and informally, the “life environment” such as security and culture, the role of “others”, “relating to others”, and finally “societal attitudes and acceptance” of autism and autistic people.
Citation: Hwang, Y.I.J., Foley, K.R., & Trollor, J.N. (2017). Aging well on the autism spectrum: the perspectives of autistic adults and carers. International Psychogeriatrics, 29(12), 2033-2046. doi:10.1017/S1041610217001521
Management of mental ill health in people with autism spectrum disorder
This paper describes mental ill health in adults on the autism spectrum and importantly identifies specific considerations for General Practitioners during assessment and management. Its suggestions include the incorporation of autism-specific knowledge and adaptation for:
2. Awareness of physical health comorbidities
3. Management of challenging behaviour
4. The environment
5. The role of carers
6. Valuing neurodiversity
Citation: Foley, K.R., & Trollor, J.N. (2015). Management of mental ill health in people with autism spectrum disorder. Australian Family Physician, 44(11), 784-790. link to article
Problems managed and medications prescribed during encounters with people with autism spectrum disorder in Australian general practice.
This paper explores the experience of autistic individuals (under 25 years of age) in general practice, by looking at the types of problems managed and medications they are prescribed. For those on the autism spectrum, management of psychological problems was significantly more common than those not on the spectrum. Moreover, rates of psychological medication prescription, especially antipsychotics and antidepressants were higher during these encounters for autistic individuals.
Citation: Birch, R.C., Foley, K.R., Pollack, A., Britt, H., Lennox, N., & Trollor, J.N. (2017). Problems managed and medications prescribed during encounters with people with autism spectrum disorder in Australian general practice. Autism, 22(8) 995-1004. doi:10.1177/1362361317714588
General practice encounters for young patients with autism spectrum disorder in Australia
This paper investigates the reasons for general practice encounters in autistic individuals (under 25 years of age) in Australia. Those on the spectrum had more reasons for encounters with general practitioners than those not on the spectrum. Their reasons were also different to those not on the spectrum. The top reasons for encounters were related to psychological conditions or requests for services such as referrals.
Citation: Foley, K.R., Pollack, A.J., Britt, H.C., Lennox, N., & Trollor, J.N. (2017). General practice encounters for young patients with autism spectrum disorder in Australia. Autism, 22(7), 784-793. doi:10.1177/1362361317702560
Neuropsychiatric profile and psychotropic medication use in adults with autism spectrum disorder
This study examined the neuropsychiatric profile and use of psychotropic medication use in autistic adults compared to non-autistic controls. Autism was associated with increased use of psychotropic medication even when controlling for the presence of any neurological or psychiatric disorder. There were no corresponding indications for 14.4% of psychotropic medications prescribed to autistic adults. These patterns of psychotropic medication use may reflect prescribing for behavioural indications despite limited evidence to support this practice.
Citation: Cvejic, R., Arnold, S. R. C., Foley, K., & Trollor, J. (2018). Neuropsychiatric profile and psychotropic medication use in adults with autism spectrum disorder: Results from the Australian Longitudinal Study of Adults with Autism. BJPsych Open, 4(6), 461-466. doi:10.1192/bjo.2018.64
Risk and Protective factors underlying depression and suicidal ideation in Autism spectrum disorder
This study examined loneliness and social support as potential risk and protective factors associated with depression and suicidal ideation in autistic adults. 49% of participants returned scores in the clinical range for depression and 36% reported recent suicidal ideation. Loneliness, satisfaction with social support, and autism traits predicted depression scores. Autism trait severity was independently related to depression, and the effects of loneliness and social support on suicidal ideation were mediated by depression. This study supports a model whereby loneliness and social support operate respectively as protective and risk factors for depression and suicidal ideation in autism.
Citation: Hedley D., Uljarevic, M., Foley, K. R., Richdale, A., & Trollor, J. (2018). Risk and protective factors underlying depression and suicidal ideation in Autism Spectrum Disorder. Depression & Anxiety, 35(7), 648-657. doi:10.1002/da.22759
Cross-sectional interactions between expressive suppression and cognitive reappraisal and its relationship with depressive symptoms in Autism Spectrum Disorder
This study explored the relationship between emotion regulation strategies known as cognitive reappraisal and expressive suppression, and symptoms of depression in adults with autism.
Those with more depressive symptoms tended to score lower on reappraisal, and higher on suppression. Both strategies were bigger predictors of depression symptoms than autism traits.
Individuals who reported high suppression and low reappraisal use experienced more depressive symptoms than those who reported high use of both suppression and reappraisal.
Citation: Cai, R., Y., Richdale, A., L., Foley, K.R., Trollor, J., Uljarevic, M. (2018). Brief Report: Cross-sectional interactions between expressive suppression and cognitive reappraisal and its relationship with depressive symptoms in autism spectrum disorder. Research in Autism Spectrum Disorders, 45, 1-8 doi:10.1016/j.rasd.2017.10.002
Leisure participation and satisfaction in autistic adults and neurotypical adults
This paper explores the leisure activities in which autistic adults participate and compares this with those of non-autistic adults. It was found taking part in solitary leisure activities was comparable between both groups, but non-autistic adults were more likely to socialise in person for leisure. Overall, autistic adults were less satisfied with their leisure compared to non-autistic adults.
Stacey, T.-L., Froude, E. H., Trollor, J., & Foley, K.-R. (2019). Leisure participation and satisfaction in autistic adults and neurotypical adults. Autism, 23(4), 993–1004. doi:10.1177/1362361318791275
Brief report: Psychometric properties of the Patient Health Questionnaire-9 (PHQ-9) in autistic adults
This brief report analyses whether the Patient Health Questionnaire is a valid depression screening measure for autistic individuals. To test this, data collected from autistic individuals aged 15–80 years was used. The study found that PHQ-9 is a useful tool in autism research, allowing for comparison across autistic and non-autistic participants.
Arnold, S. R. C., Uljarevic, M., Hwang Y. I., Richdale, A. L., Trollor, J. N., & Lawson, L. P. (in press). Brief report: Psychometric properties of the Patient Health Questionnaire-9 (PHQ-9) in autistic adults. Journal of Autism and Developmental Disorders