Cohort profile: the Australian Longitudinal Study of Adults with Autism (ALSAA).

Adult Aged Australia Autistic Disorder / diagnosis Female Humans Longitudinal Studies Male Middle Aged Prospective Studies Surveys and Questionnaires
adult autism longitudinal

Journal

BMJ open
ISSN: 2044-6055
Titre abrégé: BMJ Open
Pays: England
ID NLM: 101552874

Informations de publication

Date de publication:
04 12 2019
Historique:
entrez: 7 12 2019
pubmed: 7 12 2019
medline: 15 12 2020
Statut: epublish

Résumé

​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.

Identifiants

DOI: 10.1136/bmjopen-2019-030798 PMID: 31806608 PMC: PMC6924702
pubmed: 31806608
pii: bmjopen-2019-030798
doi: 10.1136/bmjopen-2019-030798
pmc: PMC6924702
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

e030798

Informations de copyright

© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

Déclaration de conflit d'intérêts

Competing interests: None declared.

Références

Autism. 2017 Nov;21(8):929-941
pubmed: 27542395
Res Dev Disabil. 2014 Sep;35(9):2003-7
pubmed: 24864053
J Intellect Disabil Res. 2002 Nov;46(Pt 8):605-12
pubmed: 12427167
Sci Rep. 2017 May 16;7(1):1956
pubmed: 28512303
J Pers Soc Psychol. 2003 Aug;85(2):348-62
pubmed: 12916575
Can J Psychiatry. 2012 May;57(5):275-83
pubmed: 22546059
J Autism Dev Disord. 2016 Oct;46(10):3281-94
pubmed: 27457364
J Autism Dev Disord. 2003 Dec;33(6):565-81
pubmed: 14714927
Chest. 2011 Jul;140(1):16-18
pubmed: 21729890
Gerontology. 2012;58(1):70-8
pubmed: 21865667
Br J Psychiatry. 2016 Dec;209(6):498-503
pubmed: 27388569
J Clin Sleep Med. 2007 Dec 15;3(7):722-8
pubmed: 18198807
J Autism Dev Disord. 2007 Oct;37(9):1735-47
pubmed: 17146700
BMC Med Res Methodol. 2010 May 20;10:45
pubmed: 20487526
Autism. 2016 Jul;20(5):515-6
pubmed: 27141078
J Intellect Disabil Res. 2014 Aug;58(8):734-45
pubmed: 23865802
Psychol Med. 1998 May;28(3):551-8
pubmed: 9626712
Med Care. 1996 Mar;34(3):220-33
pubmed: 8628042
J Autism Dev Disord. 2011 May;41(5):589-96
pubmed: 20697795
Curr Opin Psychiatry. 2017 Mar;30(2):69-76
pubmed: 28067726
Clin Psychol Rev. 2014 Feb;34(1):73-86
pubmed: 24424351
J Appl Res Intellect Disabil. 2014 Jan;27(1):3-12
pubmed: 24390972
Int J Behav Med. 1997;4(1):92-100
pubmed: 16250744
J Pers Assess. 1987 Spring;51(1):69-81
pubmed: 3572711
Res Dev Disabil. 2009 Nov-Dec;30(6):1107-14
pubmed: 19604668
Psychiatry Res. 1989 May;28(2):193-213
pubmed: 2748771
J Autism Dev Disord. 2013 Apr;43(4):775-84
pubmed: 22832890
J Intellect Disabil Res. 2004 Mar;48(Pt 3):262-7
pubmed: 15025669
Autism. 2016 Jul;20(5):551-61
pubmed: 26162628
J Autism Dev Disord. 2014 Mar;44(3):627-35
pubmed: 23989936
J Autism Dev Disord. 2010 Oct;40(10):1171-8
pubmed: 20182784
J Autism Dev Disord. 2020 Jul;50(7):2326-2335
pubmed: 29721743
Virtual Mentor. 2012 Jun 01;14(6):503-10
pubmed: 23351267
J Intellect Disabil. 2018 Mar;22(1):96-108
pubmed: 27623754
Lancet Psychiatry. 2015 Nov;2(11):1013-27
pubmed: 26544750
Autism. 2016 May;20(4):483-95
pubmed: 26111537
Dev Psychol. 2013 Jan;49(1):59-71
pubmed: 22545843
J Autism Dev Disord. 2017 Nov;47(11):3370-3379
pubmed: 28755032
Br J Psychiatry Suppl. 2000;(39):s28-33
pubmed: 10945075
Psychol Sci. 2007 Aug;18(8):657-62
pubmed: 17680932
J Autism Dev Disord. 2015 Aug;45(8):2474-86
pubmed: 25772536
Autism Adulthood. 2019 Sep 1;1(3):182-193
pubmed: 36601420
J Autism Dev Disord. 2015 Nov;45(11):3680-92
pubmed: 26155763
Autism Res. 2017 Jan;10(1):179-187
pubmed: 28102641
J Am Acad Child Adolesc Psychiatry. 2017 Jun;56(6):466-474
pubmed: 28545751
J Am Acad Child Adolesc Psychiatry. 2013 Jun;52(6):572-81.e1
pubmed: 23702446
Autism. 2015 Oct;19(7):794-804
pubmed: 25964655
Mol Autism. 2013 Dec 09;4(1):49
pubmed: 24321513
BJPsych Open. 2018 Nov 13;4(6):461-466
pubmed: 30450225
Res Dev Disabil. 2007 Jul-Sep;28(4):341-52
pubmed: 16765022
Depress Anxiety. 2018 Jul;35(7):648-657
pubmed: 29659141
Prog Community Health Partnersh. 2011 Summer;5(2):143-50
pubmed: 21623016
J Autism Dev Disord. 2018 May;48(5):1596-1611
pubmed: 29188584
J Can Acad Child Adolesc Psychiatry. 2009 Nov;18(4):322-8
pubmed: 19881941
Autism Adulthood. 2019 Mar 1;1(1):1-3
pubmed: 36600692
J Anxiety Disord. 2007;21(1):105-17
pubmed: 16647833
Autism. 2019 May;23(4):943-953
pubmed: 30095277
J Autism Dev Disord. 2020 Sep;50(9):3155-3165
pubmed: 31190198
Disabil Health J. 2013 Jan;6(1):8-17
pubmed: 23260606
Autism. 2015 Oct;19(7):832-41
pubmed: 26014841
JAMA. 1994 Dec 14;272(22):1749-56
pubmed: 7966923
Prog Community Health Partnersh. 2015 Summer;9(2):157-70
pubmed: 26412758
Res Dev Disabil. 2015 Aug-Sep;43-44:51-60
pubmed: 26151443
Autism. 2019 Oct;23(7):1782-1792
pubmed: 30818970
J Autism Dev Disord. 2014 Dec;44(12):3063-71
pubmed: 24958436
Autism. 2019 Nov;23(8):2007-2019
pubmed: 30939892
Autism. 2014 Oct;18(7):756-70
pubmed: 24789871
Mayo Clin Proc. 2012 Dec;87(12):1196-201
pubmed: 23218087
Br J Psychiatry. 2016 Mar;208(3):232-8
pubmed: 26541693
Autism Res. 2021 Oct;14(10):2061-2077
pubmed: 34374491
Health Qual Life Outcomes. 2007 Nov 27;5:63
pubmed: 18042300
Autism. 2015 Oct;19(7):814-23
pubmed: 25911091
Depress Anxiety. 2012 Dec;29(12):1014-24
pubmed: 22933460
Int Psychogeriatr. 1992 Fall;4(2):165-76
pubmed: 1477304
J Autism Dev Disord. 2017 Jul;47(7):2080-2091
pubmed: 28425021
J Autism Dev Disord. 2003 Aug;33(4):365-82
pubmed: 12959416
J Autism Dev Disord. 2020 Jun;50(6):2217-2225
pubmed: 30847710
Ment Retard Dev Disabil Res Rev. 2004;10(4):234-47
pubmed: 15666341
J Autism Dev Disord. 2017 Nov;47(11):3669-3677
pubmed: 28861661
Autism. 2014 Oct;18(7):782-93
pubmed: 24989447
J Gen Intern Med. 2001 Sep;16(9):606-13
pubmed: 11556941
Autism. 2019 May;23(4):993-1004
pubmed: 30132680
J Autism Dev Disord. 2016 Jun;46(6):1916-1930
pubmed: 26861713
Gerontologist. 2001 Oct;41(5):652-7
pubmed: 11574710
J Gen Intern Med. 2013 Jun;28(6):761-9
pubmed: 23179969
J Autism Dev Disord. 2012 Dec;42(12):2669-79
pubmed: 22466690
J Autism Dev Disord. 2016 May;46(5):1793-805
pubmed: 26810436
Autism. 2013 Jan;17(1):103-16
pubmed: 22914775

Auteurs

Samuel Arnold (S)

Department of Developmental Disability Neuropsychiatry (3DN), UNSW, Sydney, New South Wales, Australia.
Cooperative Research Centre for Living with Autism (Autism CRC), Brisbane, Queensland, Australia.
ORCID: 0000-0003-2900-223X

Kitty-Rose Foley (KR)

Cooperative Research Centre for Living with Autism (Autism CRC), Brisbane, Queensland, Australia.
School of Health and Human Sciences, Southern Cross University, Gold Coast, Bilinga, Queensland, Australia.

Ye In Jane Hwang (YIJ)

Department of Developmental Disability Neuropsychiatry (3DN), UNSW, Sydney, New South Wales, Australia.
Cooperative Research Centre for Living with Autism (Autism CRC), Brisbane, Queensland, Australia.

Amanda L Richdale (AL)

Cooperative Research Centre for Living with Autism (Autism CRC), Brisbane, Queensland, Australia.
Olga Tennison Autism Research Centre, School of Psychology and Public Health, La Trobe University, Bundoora, Victoria, Australia.

Mirko Uljarevic (M)

Cooperative Research Centre for Living with Autism (Autism CRC), Brisbane, Queensland, Australia.
Olga Tennison Autism Research Centre, School of Psychology and Public Health, La Trobe University, Bundoora, Victoria, Australia.
Stanford Autism Center, Division of Child and Adolescent Psychiatry, Department of Psychiatry and Behavioral Sciences, School of Medicine, Stanford University, Stanford, California, USA.

Lauren P Lawson (LP)

Cooperative Research Centre for Living with Autism (Autism CRC), Brisbane, Queensland, Australia.
Olga Tennison Autism Research Centre, School of Psychology and Public Health, La Trobe University, Bundoora, Victoria, Australia.

Ru Ying Cai (RY)

Cooperative Research Centre for Living with Autism (Autism CRC), Brisbane, Queensland, Australia.
Olga Tennison Autism Research Centre, School of Psychology and Public Health, La Trobe University, Bundoora, Victoria, Australia.

Torbjorn Falkmer (T)

Cooperative Research Centre for Living with Autism (Autism CRC), Brisbane, Queensland, Australia.
School of Occupational Therapy, Social Work and Speech Pathology, Curtin University, Perth, Western Australia, Australia.

Marita Falkmer (M)

Cooperative Research Centre for Living with Autism (Autism CRC), Brisbane, Queensland, Australia.
School of Occupational Therapy, Social Work and Speech Pathology, Curtin University, Perth, Western Australia, Australia.
School of Education and Communication, CHILD Programme, Institution of Disability Research, Jonkoping University, Jonkoping, Sweden.

Nick G Lennox (NG)

Cooperative Research Centre for Living with Autism (Autism CRC), Brisbane, Queensland, Australia.
Queensland Centre for Intellectual and Developmental Disability, Mater Research Institute - UQ, University of Queensland, South Brisbane, Queensland, Australia.

Anna Urbanowicz (A)

Cooperative Research Centre for Living with Autism (Autism CRC), Brisbane, Queensland, Australia.
Queensland Centre for Intellectual and Developmental Disability, Mater Research Institute - UQ, University of Queensland, South Brisbane, Queensland, Australia.
Health, Society & Medicine Research Program, Social and Global Studies Centre, RMIT University, Melbourne, Victoria, Australia.

Julian Trollor (J)

Department of Developmental Disability Neuropsychiatry (3DN), UNSW, Sydney, New South Wales, Australia J.Trollor@unsw.edu.au.
Cooperative Research Centre for Living with Autism (Autism CRC), Brisbane, Queensland, Australia.
ORCID: 0000-0002-7685-2977

Articles similaires

[Redispensing of expensive oral anticancer medicines: a practical application].

Lisanne N van Merendonk, Kübra Akgöl, Bastiaan Nuijen
1.00
Humans Antineoplastic Agents Administration, Oral Drug Costs Counterfeit Drugs

Smoking Cessation and Incident Cardiovascular Disease.

Jun Hwan Cho, Seung Yong Shin, Hoseob Kim et al.
1.00
Humans Male Smoking Cessation Cardiovascular Diseases Female

Evaluation of Low-Value Services Across Major Medicare Advantage Insurers and Traditional Medicare.

Ciara Duggan, Adam L Beckman, Ishani Ganguli et al.
1.00
Humans United States Aged Cross-Sectional Studies Medicare Part C

Effectiveness of Virtual Yoga for Chronic Low Back Pain: A Randomized Clinical Trial.

Hallie Tankha, Devyn Gaskins, Amanda Shallcross et al.
1.00
Humans Yoga Low Back Pain Female Male

Classifications MeSH

questionsmedicales.fr › Personnes › Tranches d'âge › Adulte › Cohort profile: the Australian Longitudinal...
questionsmedicales.fr › Personnes › Tranches d'âge › Adulte › Sujet âgé › Cohort profile: the Australian Longitudinal...
questionsmedicales.fr › Régions géographiques › Océanie › Australasie › Australie › Cohort profile: the Australian Longitudinal...
questionsmedicales.fr › Troubles mentaux › Troubles du développement neurologique › Troubles généralisés du développement de l'enfant › Trouble du spectre autistique › Trouble autistique › Cohort profile: the Australian Longitudinal...
questionsmedicales.fr › Eucaryotes › Animaux › Chordés › Vertébrés › Mammifères › Eutheria › Primates › Haplorhini › Catarrhini › Hominidae › Humains › Cohort profile: the Australian Longitudinal...
questionsmedicales.fr › Environnement et santé publique › Santé publique › Méthodes épidémiologiques › Caractéristiques des études épidémiologiques › Études épidémiologiques › Études de cohortes › Études longitudinales › Cohort profile: the Australian Longitudinal...
questionsmedicales.fr › Personnes › Tranches d'âge › Adulte › Adulte d'âge moyen › Cohort profile: the Australian Longitudinal...
questionsmedicales.fr › Environnement et santé publique › Santé publique › Méthodes épidémiologiques › Caractéristiques des études épidémiologiques › Études épidémiologiques › Études de cohortes › Études prospectives › Cohort profile: the Australian Longitudinal...
questionsmedicales.fr › Environnement et santé publique › Santé publique › Méthodes épidémiologiques › Collecte de données › Enquêtes et questionnaires › Cohort profile: the Australian Longitudinal...