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LIBRIS Formathandbok  (Information om MARC21)
FältnamnIndikatorerMetadata
00005610naa a2200457 4500
001oai:DiVA.org:hj-46763
003SwePub
008191104s2019 | |||||||||||000 ||eng|
0247 a https://urn.kb.se/resolve?urn=urn:nbn:se:hj:diva-467632 URI
0247 a https://doi.org/10.1136/bmjopen-2019-0307982 DOI
040 a (SwePub)hj
041 a engb eng
042 9 SwePub
072 7a ref2 swepub-contenttype
072 7a art2 swepub-publicationtype
1001 a Arnold, Samuel R. C.u Department of Developmental Disability Neuropsychiatry (3DN), UNSW Sydney, New South Wales, Australia4 aut
2451 0a Cohort profile :b The Australian Longitudinal Study of Adults with Autism
264 c 2019-12-04
264 1b BMJ Publishing Group Ltd,c 2019
338 a print2 rdacarrier
520 a PURPOSE: There is a significant knowledge gap regarding the lives of adults on the autism spectrum. Some literature suggests significant health and mental health inequalities for autistic adults, yet there is a lack of comprehensive longitudinal studies exploring risk factors. Further, most research does not include the perspective of autistic adults in its conduct or design. Here, we describe the baseline characteristics and inclusive research approach of a nationwide longitudinal study. ​PARTICIPANTS: The Autism Cooperative Research Centre for Living with Autism's Australian Longitudinal Study of Adults with Autism (ALSAA) is a questionnaire-based longitudinal study of autistic adults (25+ years old) with follow-up at 2-year intervals. Autistic advisors were involved in each stage of research apart from data analysis. Three questionnaires were developed: self-report, informant report (ie, proxy report) and carers (ie, carer experiences and characteristics). ​FINDINGS TO DATE: An inclusive research protocol was developed and agreed with autistic advisors. Baseline data were collected from 295 autistic adults (M=41.8 years, SD=12.0) including 42 informant responses, 146 comparison participants and 102 carers. The majority of autistic participants (90%) had been diagnosed in adulthood (M=35.3 years, SD=15.1). When compared with controls, autistic adults scored higher on self-report measures of current depression and anxiety. Participant comments informed ongoing data gathering. Participants commented on questionnaire length, difficulty with literal interpretation of forced response items and expressed gratitude for research in this area.​FUTURE PLANS: A large comprehensive dataset relating to autistic adults and their carers has been gathered, creating a good platform for longitudinal follow-up repeat surveys and collaborative research. Several outputs are in development, with focus on health service barriers and usage, caregivers, impact of diagnosis in adulthood, further scale validations, longitudinal analyses of loneliness, suicidal ideation, mental illness risk factors and other areas. Baseline data confirm poorer mental health of autistic adults. The ALSAA demonstrates a working approach to inclusive research.
650 7a MEDICIN OCH HÄLSOVETENSKAPx Klinisk medicinx Psykiatri0 (SwePub)302152 hsv//swe
650 7a MEDICAL AND HEALTH SCIENCESx Clinical Medicinex Psychiatry0 (SwePub)302152 hsv//eng
653 a adult; autism; longitudinal
7001 a Foley, Kitty-Roseu Cooperative Research Centre for Living with Autism (Autism CRC), Brisbane, Queensland, Australia4 aut
7001 a Hwang, Ye In (Jane)u Department of Developmental Disability Neuropsychiatry (3DN), UNSW Sydney, New South Wales, Australia4 aut
7001 a Richdale, Amanda L.u Cooperative Research Centre for Living with Autism (Autism CRC), Brisbane, Queensland, Australia4 aut
7001 a Uljarevic, Mirkou Stanford Autism Center, Division of Child and Adolescent Psychiatry, Department of Psychiatry and Behavioral Sciences, School of Medicine, Stanford University4 aut
7001 a Lawson, Lauren P.u Cooperative Research Centre for Living with Autism (Autism CRC), Brisbane, Queensland, Australia4 aut
7001 a Cai, Ru Yingu Cooperative Research Centre for Living with Autism (Autism CRC), Brisbane, Queensland, Australia4 aut
7001 a Falkmer, Torbjörn,d 1958-u Jönköping University,HHJ. CHILD,Cooperative Research Centre for Living with Autism (Autism CRC), Brisbane, Queensland, Australia4 aut0 (Swepub:hj)Fato
7001 a Falkmer, Marita,d 1958-u Jönköping University,HLK, CHILD,Cooperative Research Centre for Living with Autism (Autism CRC), Brisbane, Queensland, Australia4 aut0 (Swepub:hj)fmar
7001 a Lennox, Nicku Cooperative Research Centre for Living with Autism (Autism CRC), Brisbane, Queensland, Australia4 aut
7001 a Urbanowicz, Annau Cooperative Research Centre for Living with Autism (Autism CRC), Brisbane, Queensland, Australia4 aut
7001 a Trollor, Julian N.u Department of Developmental Disability Neuropsychiatry (3DN), UNSW Sydney, New South Wales, Australia4 aut
7102 a Department of Developmental Disability Neuropsychiatry (3DN), UNSW Sydney, New South Wales, Australiab Cooperative Research Centre for Living with Autism (Autism CRC), Brisbane, Queensland, Australia4 org
7730 t BMJ Opend : BMJ Publishing Group Ltdg 9:12q 9:12x 2044-6055
8564 u https://doi.org/10.1136/bmjopen-2019-030798y Fulltext
8564 u https://bmjopen.bmj.com/content/bmjopen/9/12/e030798.full.pdf
8564 8u https://urn.kb.se/resolve?urn=urn:nbn:se:hj:diva-46763
8564 8u https://doi.org/10.1136/bmjopen-2019-030798

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