Department of Developmental Disability Neuropsychiatry (3DN)

Australian Longitudinal Study of Adults with Autism (ALSAA)

image - Autism CRC Project
Project Main Description
Researchers at the UNSW and the Autism CRC are seeking volunteer research participants to learn about life in adulthood for people with autism/Asperger’s syndrome.
 
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.
 
 
Download our recruitment flyers
 
 
 
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 with autism 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 people with autism. Results from this study will be shared with individuals with autism, 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 with autism. 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:
 
Sam Arnold
(02) 9385 0620
 
 

Study updates

 
 

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. 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). 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, 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., & Tollor, J.N. (2017) General practice encounters for young patients with autism spectrum disorder in Australia. Autism. doi:10.1177/1362361317702560

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