Researchers at UNSW and the Autism CRC gathered data from autistic and non-autistic adults to learn about life in adulthood for people on the autism spectrum. Recruitment for this study is now closed.
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.
Publications arising from this project
Development of the Impact of Diagnosis Scale
This paper describes the revision of an assessment tool that measures the impact of receiving an autism diagnosis in adulthood. Working with a group of autistic research advisors, a new tool was developed, covering domains of Service Access, Being Understood and Self-Acceptance and Understanding. Scores suggested that although impact of autism diagnosis was generally perceived as positive for Self-Acceptance and Understanding, scores were neutral in other domains.
Citation: Arnold, S. R. C., Lawson, L., Hwang, Y. I., Richdale, A. L., & Trollor, J. (2020). “The single most important thing that has happened to me in my life”: Development of the Impact of Diagnosis Scale – Preliminary Revision (IODS-PR). Autism in Adulthood, 2(1), 34-41. doi.org/10.1089/aut.2019.0059
Health Service for Australian Autistic Adults
This commentary highlighted the need for further research and advocacy into Australian health services for autistic adults. At present Australia is not meeting its obligations to provide appropriate care for people with disabilities and healthcare professionals do not feel adequately competent in delivering care that is tailored to this population. Furthermore, autistic adults experience communication difficulties and anxiety that make it challenging for them to seek support and communicate their health needs. The major limitation identified in the Urbanowicz et al. (2020) study was the limited sample size and a potential social desirability bias, which could underrepresent the substantial difficulties and poor services received by autistic adults. Finally, it was commented that relying on the opinions and experiential accounts of autistic adults, rather than healthcare professionals, may be a more valid way of assessing health services.
Citation: Arnold, S. R.C., Higgins, J. M. & Trollor, J. (2020). Health services for Australian autistic adults: Commentary on “The experiences, views, and needs of health professionals who provide care to adults on the autism spectrum” (Urbanowicz, Parkin, van Dooren, Girdler, Ciccarelli, & Lennox, 2020). Research and Practice in Intellectual and Developmental Disabilities, 7(2), 193-198. doi.org/10.1080/23297018.2020.1753566
Quality of Life
This study used both cross-sectional and longitudinal data to assess Quality of Life (QoL) in autistic people across the lifespan, with a focus on mental health and sleep quality as predictors of QoL. Significant predictors of QoL in both groups were: depression symptoms, psychological well-being, sleep quality and autonomic symptoms (e.g. sweating). Given known relationships between sleep and mental health, an accessible intervention addressing these may have greatest clinical impact on quality of life among autistic individuals.
Citation: Lawson, L. P; Richdale, A. L., Hascheck, A., Flower, R., Vartuli, J., Arnold, S. R. C., & Trollor, J. N. (2019). Cross-sectional and longitudinal predictors of quality of life in autistic individuals from adolescence to adulthood: the role of mental health and sleep quality. Autism. doi.org/10.1177/1362361320908107
Scoping Review of Diagnosis in Adulthood
Frequency of autistic diagnosis in adulthood has been increasing. Despite this increase, accessibility and diagnostic processes are inconsistent and there is a lack of formal support services for autistic adults.
This scoping review concluded that receiving an an autism diagnosis in adulthood has an emotional impact and thus it is crucial for more adequate support services, such as counselling, to be available for autistic adults post diagnostic assessment. Furthermore, consistent and rigorous diagnostic practices are necessary when diagnosing autism in adulthood and new national guidelines need widespread implementation.
Citation: Huang, Y., Arnold, S. R. C., Foley, K. -R. & Trollor, J. (in press). Diagnosis of autism in adulthood: A scoping review. Autism. doi.org/10.1177/1362361320903128
Autism and Sleep Quality
Sleep issues are a common experience for autistic people, however limited research has investigated poor sleep quality beyond childhood. This study examined sleep quality in 530 autistic and non-autistic people, ranging from 15-80 years of age. The study found that problematic sleep was higher in the autistic group (63.7%) than the control (46.4%) and poorer sleep quality was also more prevalent in females than males. The findings in this study identified that sleep difficulties persist across the lifespan for autistic adults and there is a critical need for future research to focus on understanding the cause of poor sleep quality in autism and develop sleep interventions for autistic adults.
Citation: Joveska, S., Richdale, A. L., Lawson, L., Uljarevic, M., Arnold, S. R. C. & Trollor, J. (in press). Sleep quality in autism from adolescence to old age. Autism in Adulthood. doi.org/10.1089/aut.2019.0034
Autism and Coping
Identifying the appropriateness of scales to measure autistic adults is pivotal in improving understanding of their abilities and needs. Resilience is a potential protective factor against poor mental health for autistic adults. The brief Connor-Davidson Resilience Scale (10-item version) has primarily been used for assessing resilience in non-autistic people, however in this study it was trialed on 95 autistic adults (63% female). The CD-RISC-10 was found to be a valid measure (unidimensional structure and robust psychometric properties) for measuring trait resilience in an autistic population.
Hwang, Y. I., Arnold, S. R. C., Trollor, J. & Uljarevic, M. (in press). Short Report: Factor structure and psychometric properties of the brief Connor Davidson Resilience Scale (CD-RISC) for adults on the autism spectrum. Autism. doi.org/10.1177/1362361320908095
Anxiety and Intolerance of Uncertainty
Anxiety is understood to be highly comorbid with autism. Intolerance of uncertainty is becoming readily understood as a contributing factor to this anxiety, as well as sensory sensitivities and repetitive behaviours. Self-report surveys were completed by 176 autistic (mean age = 42) and 116 non-autistic adults with findings revealing significant and positive correlations between intolerance of uncertainty, anxiety, repetitive behaviours and sensory sensitivities in autistic sample. Intolerance of uncertainty had the strongest correlation with anxiety (r = 0.55). Managing intolerance of uncertainty at an individual level may be a sustainable method of alleviating anxiety, above and beyond attempting to minimize as much uncertainty as possible in their lives.
Citation: Hwang, Y. I., Arnold, S. R. C., Srasuebkul, P., & Trollor, J. N. (2020). Understanding anxiety in adults on the autism spectrum: an investigation of its relationship with intolerance of uncertainty, sensory sensitivities and repetitive behaviours. Autism, 24(2), 411-422. doi.org/10.1177/1362361319868907
ALSAA Cohort Profile
There is a lack of comprehensive longitudinal studies of autism in adulthood. ALSAA gathers data on autistic and non-autistic adults aged 25+. Baseline data showed high rates of depression and anxiety in autistic adults. A protocol for inclusive research was developed.
Citation: Arnold, S. R. C., Foley, K.-R., Hwang, Y. I., Richdale, A. L., Uljarevic, M., Lawson, L., Cai, R., Falkmer, T., Falkmer, M., Lennox, N., Urbanowicz, A. & Trollor, J. (2019). Cohort Profile: The Australian Longitudinal Study of Adults with Autism (ALSAA). BMJOpen, 9(12), e030798. dx.doi.org/10.1136/bmjopen-2019-030798
Loneliness in autistic adults
Loneliness is commonly experienced by autistic adults, however little research has examined the factors that contribute to this. Researchers at UNSW conducted both quantitative and qualitative analysis of data from a sample of 220 autistic and 146 non-autistic adults to identify predictors of loneliness. Results showed that scores on the University of California, Los Angeles (UCLA) loneliness scale (ULS-8) were higher for autistic participants, with the Autism Quotient subdomains of social skills and dissatisfaction with social support being the biggest associated factors of loneliness. Thematic analysis of qualitative responses to how participants socialize helped the researchers to interpret the quantitative data more effectively.
Citation: Ee, D., Hwang, J., Reppermund, S., Srasuebkul, P., Trollor, J., Foley, K., -R., & Arnold, S. R. C. (2019). Loneliness in Adults on the Autism Spectrum. Autism in Adulthood, 1(3), 182-193. doi.org/10.1089/aut.2018.0038
Caregiver Wellbeing
Twenty-three studies were included in this systematic review that aimed to understand what constitutes the mental wellbeing of carers of people with developmental disabilities. The factors most consistently associated with higher wellbeing were adaptive skills and quality for the caring relationships, whereas factors such as carer age and formal services received had weaker associations. The authors mapped these results an existing model of carer psychological wellbeing developed by King et al (Journal of Paediatric Psychology, 24(1), 41-53, 1999).
Citation: Sonido, M. T., Hwang, J., Trollor, J. N. & Arnold, S. R. C. (2019). The mental well-being of informal caregivers of adults with autism spectrum disorder: A systematic review. Review Journal of Autism and Developmental Disorders. doi.org/10.1007/s40489-019-00177-8
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:
1. Communication
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
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