Unheard voices: A systematic literature review of studies using self-report methods to gather the perspectives of autistic adults with intellectual disability

Added on 13/12/2024

Type de contenu

Journal article of the type Scientific literature review ( ; english)

Vicki Gibbs , Ru Ying Cai , Abigail Love , Chris Edwards * , Mustafa Al Ansari
Unheard voices: A systematic literature review of studies using self-report methods to gather the perspectives of autistic adults with intellectual disability published in the journal "Autism in adulthood" Preprint, 17 pages , doi: 10.1089/aut.2024.0272

*One co-author has publicly identified as autistic. [Learn more about this mention]

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Summary/Presentation

Background: Autistic individuals with intellectual disability remain significantly underrepresented in research, particularly in studies that capture their lived experiences through self-report methods. This systematic review critically examines existing research employing self-report methods in studies where the focus is on autistic adults who have intellectual disability, evaluating the scope of this research, the self-report measures used, and the extent of community involvement.
Methods: We conducted a systematic literature review in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. We searched PsycINFO, Scopus, MEDLINE, ERIC, CINAHL, and Web of Science for studies published between January 2013 and July 2023. We conducted a narrative synthesis to evaluate study characteristics, the use of self-report measures, and the involvement of autistic individuals and their communities in the research process.
Results: Only 14 studies met the inclusion criteria. The majority focused narrowly on evaluating interventions, with little attention paid to exploring the broader lived experiences of autistic adults with intellectual disability. We identified 24 self-report measures, yet only two had been validated specifically for individuals with intellectual disability. Furthermore, less than half of the remaining measures reported the use of any adaptations or accommodations such as visual aids or simplified language. Alarmingly, community involvement was almost entirely absent, with no studies incorporating co-production with autistic individuals.
Conclusions: This review reveals a critical and urgent need for autism research that genuinely includes and represents autistic adults with intellectual disability. It is imperative that future research prioritizes the development and rigorous validation of accessible self-report tools, expands its focus beyond intervention outcomes, and commits to the meaningful involvement of autistic individuals throughout the research process. Addressing these profound gaps is essential for building an equitable and inclusive body of knowledge that fully recognizes and responds to the diverse experiences within the autistic community.

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(3) Authors whose names are followed by an asterisk have publicly disclosed being autistic.

  • C. Allison, B. Auyeung, S. Baron-Cohen (2012). "Toward Brief 'Red Flags' for Autism Screening: The Short Autism Spectrum Quotient and the Short Quantitative Checklist in 1,000 Cases and 3,000 Controls". Journal of the American Academy of Child & Adolescent Psychiatry, 51(2). doi:10.1016/j.jaac.2011.11.003

  • T. Arwert, B. Sizoo (2020). "Self-reported Suicidality in Male and Female Adults with Autism Spectrum Disorders: Rumination and Self-esteem". J Autism Dev Disord, 50(10). doi:10.1007/s10803-020-04372-z

  • J. Ashburner, V. Tomkins, N. Bobir, J. Jones, D. Smith, J. Hautsalo, E. Swift (2022). "Co-Design and Co-Production of a Goal Setting Tool for Autistic Adolescents and Adults". Autism in Adulthood. doi:10.1089/aut.2021.0067

  • S. Ashworth, J. Bamford, R. Tully (2020). "The effectiveness of a CBT-based intervention for depression symptoms with a female forensic inpatient with cognitive disability and autism". The Journal of Forensic Psychiatry & Psychology, 31(3). doi:10.1080/14789949.2020.1754445

  • N. Beail, K. Williams* (2014). "Using Qualitative Methods in Research with People Who Have Intellectual Disabilities". Research Intellect Disabil, 27(2). doi:10.1111/jar.12088

  • T. Benevides, S. Shore, K. Palmer, P. Duncan, A. Plank, M. Andresen, R. Caplan*, B. Cook, D. Gassner*, B. Lory Hector*, L. Morgan, L. Nebeker, Y. Purkis, B. Rankowski, K. Wittig, S. Coughlin (2020). "Listening to the autistic voice: Mental health priorities to guide research and practice in autism from a stakeholder-driven project". Autism, 24(4). doi:10.1177/1362361320908410

  • T. Bergmann, J. Birkner, T. Sappok, M. Schmidt (2021). "The Autism-Competency-Group (AutCom). A promising approach to promote social skills in adults with autism spectrum disorder and intellectual disability". International Journal of Developmental Disabilities, 67(5). doi:10.1080/20473869.2021.1967697

  • R. Bishop, R. Laugharne, N. Shaw, A. Russell, D. Goodley, S. Banerjee, E. Clack, I., I., R. Shankar (2024). "The inclusion of adults with intellectual disabilities in health research – challenges, barriers and opportunities: a mixed‐method study among stakeholders in England". J intellect Disabil Res, 68(2). doi:10.1111/jir.13097

  • S. Borghino, M. Gallacher, D. Lawrence (2024). "Exploring the Use of Neurofeedback with an Adult Male with an Autistic Spectrum Condition and a History of Sexual Offending: A Single Case Study". Journal of Forensic Psychology Research and Practice, 24(3). doi:10.1080/24732850.2022.2130736

  • A. Briesch, S. Chafouleas (2009). "Exploring Student Buy-In: Initial Development of an Instrument to Measure Likelihood of Children's Intervention Usage". Journal of Educational and Psychological Consultation, 19(4). doi:10.1080/10474410903408885

  • K. Brooker, K. van Dooren, C. Tseng, L. McPherson, N. Lennox, R. Ware (2015). "Out of sight, out of mind? The inclusion and identification of people with intellectual disability in public health research". Perspect Public Health, 135(4). doi:10.1177/1757913914552583

  • M. Brooks, S. Davies, E. Twigg (2013). "A measure for feelings – using inclusive research to develop a tool for evaluating psychological therapy (Clinical Outcomes in Routine Evaluation – Learning Disability)". Brit J Learn Disabil, 41(4). doi:10.1111/bld.12020

  • E. Cage, J. Howes (2020). "Dropping out and moving on: A qualitative study of autistic people's experiences of university". Autism, 24(7). doi:10.1177/1362361320918750

  • D. Christensen, M. Maenner, D. Bilder, J. Constantino, J. Daniels, M. Durkin, R. Fitzgerald, M. Kurzius-Spencer, S. Pettygrove, C. Robinson, J. Shenouda, T. White, W. Zahorodny, K. Pazol, P. Dietz (2019). "Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 4 Years — Early Autism and Developmental Disabilities Monitoring Network, Seven Sites, United States, 2010, 2012, and 2014". MMWR Surveill. Summ., 68(2). doi:10.15585/mmwr.ss6802a1

  • B. Clark, J. Magill-Evans, C. Koning (2015). "Youth With Autism Spectrum Disorders". Focus Autism Other Dev Disabl, 30(1). doi:10.1177/1088357614522289

  • F. Cuthill, C. Espie, S. Cooper (2003). "Development and psychometric properties of the Glasgow Depression Scale for people with a Learning Disability". Br J Psychiatry, 182(4). doi:10.1192/bjp.182.4.347

  • C. de Haas, J. Grace, J. Hope, M. Nind (2022). "Doing Research Inclusively: Understanding What It Means to Do Research with and Alongside People with Profound Intellectual Disabilities". Social Sciences, 11(4). doi:10.3390/socsci11040159

  • A. DePape, S. Lindsay (2016). "Lived Experiences From the Perspective of Individuals With Autism Spectrum Disorder". Focus Autism Other Dev Disabl, 31(1). doi:10.1177/1088357615587504

  • S. Egilson, L. Ólafsdóttir, T. Leósdóttir, E. Saemundsen (2017). "Quality of life of high-functioning children and youth with autism spectrum disorder and typically developing peers: Self- and proxy-reports". Autism, 21(2). doi:10.1177/1362361316630881

  • M. Feldman, J. Bosett, C. Collet, P. Burnham‐Riosa (2014). "Where are persons with intellectual disabilities in medical research? A survey of published clinical trials". J intellect Disabil Res, 58(9). doi:10.1111/jir.12091

  • H. Goddard, A. Cook (2022). "'I Spent Most of Freshers in my Room'—A Qualitative Study of the Social Experiences of University Students on the Autistic Spectrum". J Autism Dev Disord, 52(6). doi:10.1007/s10803-021-05125-2

  • K. Greenberg, B. Hounshel, L. Kalb, A. Schwartz* (2024). "Examining cognitive accessibility of the VIA Inventory of Strengths for adults with intellectual disability". Research Intellect Disabil, 37(2). doi:10.1111/jar.13202

  • G. Hancock, M. Stokes, G. Mesibov (2020). "Differences in Romantic Relationship Experiences for Individuals with an Autism Spectrum Disorder". Sex Disabil, 38(2). doi:10.1007/s11195-019-09573-8

  • N. Haruvi-Lamdan, D. Horesh, S. Zohar, M. Kraus, O. Golan (2020). "Autism Spectrum Disorder and Post-Traumatic Stress Disorder: An unexplored co-occurrence of conditions". Autism, 24(4). doi:10.1177/1362361320912143

  • S. Havercamp, L. Jarrett Barnhill, A. Bonardi, R. Chapman*, C. Cobranchi, R. Fletcher, P. Rabidoux, J. Seeley, M. Tassé, I. (2022). "Straight from the horse's mouth: Increasing self‐report in mental health assessment in individuals with intellectual disability". Research Intellect Disabil, 35(2). doi:10.1111/jar.12952

  • A. Hollomotz (2018). "Successful interviews with people with intellectual disability". Qualitative Research, 18(2). doi:10.1177/1468794117713810

  • Q. Nha Hong, S. Fàbregues, G. Bartlett, F. Boardman, M. Cargo, P. Dagenais, M. Gagnon, F. Griffiths, B. Nicolau, A. O’Cathain, M. Rousseau, I. Vedel, P. Pluye (2018). "The Mixed Methods Appraisal Tool (MMAT) version 2018 for information professionals and researchers". EFI, 34(4). doi:10.3233/efi-180221

  • A. Horn, R. Gable, J. Bobzien, S. Tonelson, M. Rock (2020). "Teaching Young Adults Job Skills Using a Constant Time Delay and eCoaching Intervention Package". Career Development and Transition for Exceptional Individuals, 43(1). doi:10.1177/2165143419828983

  • S. Jones* (2022). "Measuring the Wrong Thing the Right Way? Time to Rethink Autism Research Tools". Autism in Adulthood, 4(2). doi:10.1089/aut.2021.0050

  • C. Jose, P. George-Zwicker, L. Tardif, A. Bouma, D. Pugsley, L. Pugsley, M. Bélanger, J. Gaudet, M. Robichaud (2020). "'We are the stakeholders with the most at stake': scientific and autism community co-researchers reflect on their collaborative experience in the CONNECT project". Res Involv Engagem, 6(1). doi:10.1186/s40900-020-00233-2

  • C. Tom Keating (2021). "Participatory Autism Research: How Consultation Benefits Everyone". Front. Psychol., 12. doi:10.3389/fpsyg.2021.713982

  • E. Kent, G. Burgess, E. Kilbey (2018). "Using the AQ-10 with adults who have a borderline or mild intellectual disability: Pilot analysis of an adapted AQ-10 (AQ-10-Intellectual Disability)". Research in Autism Spectrum Disorders, 54. doi:10.1016/j.rasd.2018.06.010

  • A. Knüppel, G. Kjaersdam Telléus, H. Jakobsen, M. Briciet Lauritsen (2018). "Quality of life in adolescents and adults with autism spectrum disorder: Results from a nationwide Danish survey using self-reports and parental proxy-reports". Research in Developmental Disabilities, 83. doi:10.1016/j.ridd.2018.09.004

  • R. Kooijmans, G. Mercera, P. Langdon, X. Moonen (2022). "The adaptation of self-report measures to the needs of people with intellectual disabilities: A systematic review.". Clinical Psychology: Science and Practice, 29(3). doi:10.1037/cps0000058

  • J. Kramer, A. Schwartz* (2017). "Reducing Barriers to Patient-Reported Outcome Measures for People With Cognitive Impairments". Archives of Physical Medicine and Rehabilitation, 98(8). doi:10.1016/j.apmr.2017.03.011

  • M. Maenner, K. Shaw, J. Baio, I., A. Washington, M. Patrick, M. DiRienzo, D. Christensen, L. Wiggins, S. Pettygrove, J. Andrews, M. Lopez, A. Hudson, T. Baroud, Y. Schwenk, T. White, C. Robinson Rosenberg, L. Lee, R. Harrington, M. Huston, A. Hewitt, I., A. Esler, J. Hall-Lande, J. Poynter, L. Hallas-Muchow, J. Constantino, R. Fitzgerald, W. Zahorodny, J. Shenouda, J. Daniels, Z. Warren, A. Vehorn, A. Salinas, M. Durkin, P. Dietz (2020). "Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016". MMWR Surveill. Summ., 69(4). doi:10.15585/mmwr.ss6904a1

  • D. Mason, V. Milner, L. Clark, E. Kelly, R. Pyefinch, F. Happé (2023). "Autistic People and Moving Home: A Systematic Review". Autism in Adulthood, 5(3). doi:10.1089/aut.2022.0016

  • J. McLeod, A. Hawbaker, E. Meanwell (2021). "The health of college students on the autism spectrum as compared to their neurotypical peers". Autism, 25(3). doi:10.1177/1362361320926070

  • C. Melvin, P. Langdon, G. Murphy (2020). "'I feel that if I didn't come to it anymore, maybe I would go back to my old ways and I don't want that to happen': Adapted sex offender treatment programmes: Views of service users with autism spectrum disorders". Research Intellect Disabil, 33(4). doi:10.1111/jar.12641

  • M. Miner, N. Raymond, E. Coleman, R. Swinburne Romine (2017). "Investigating Clinically and Scientifically Useful Cut Points on the Compulsive Sexual Behavior Inventory". The Journal of Sexual Medicine, 14(5). doi:10.1016/j.jsxm.2017.03.255

  • L. Nabors, A. Overstreet, C. Carnahan, K. Ayers (2021). "Evaluation of a Pilot Healthy Eating and Exercise Program for Young Adults with Autism Spectrum Disorder and Intellectual Disabilities". Adv Neurodev Disord, 5(4). doi:10.1007/s41252-021-00214-w

  • D. Nicholas, J. Orjasaeter, L. Zwaigenbaum (2019). "Considering Methodological Accommodation to the Diversity of ASD: A Realist Synthesis Review of Data Collection Methods for Examining First-Person Experiences". Rev J Autism Dev Disord, 6(2). doi:10.1007/s40489-019-00164-z

  • J. Eloise Norris, J. Lei, K. Maras (2024). "Adapting communication with autistic service users: Co-produced adaptations for medical services, employers, and the third sector". Neurodiversity, 2. doi:10.1177/27546330241266723

  • P. O'Brien, R. McConkey, E. García‐Iriarte (2014). "Co‐researching with People who Have Intellectual Disabilities: Insights From a National Survey". Research Intellect Disabil, 27(1). doi:10.1111/jar.12074

  • M. James Page, J. McKenzie, P. Bossuyt, I. Boutron, T. Hoffmann, c. mulrow, L. Shamseer, J. Tetzlaff, E. Akl, S. Brennan, R. Chou, J. Glanville, J. Grimshaw, A. Hróbjartsson, M. Mathew Lalu, T. Li, E. Loder, E. Mayo-Wilson, S. McDonald, L. McGuinness, L. Stewart, J. Thomas, A. Tricco, V. Andrea Welch, P. Whiting, D. Moher (2020). "The PRISMA 2020 statement: an updated guideline for reporting systematic reviews". The BMJ. doi:10.31222/osf.io/v7gm2

  • A. De Los Reyes (2011). "Introduction to the Special Section: More Than Measurement Error: Discovering Meaning Behind Informant Discrepancies in Clinical Assessments of Children and Adolescents". Journal of Clinical Child & Adolescent Psychology, 40(1). doi:10.1080/15374416.2011.533405

  • N. Richards, L. Crane (2020). "The Development and Feasibility Study of a Multimodal 'Talking Wall' to Facilitate the Voice of Young People with Autism and Complex Needs: A Case Study in a Specialist Residential School". J Autism Dev Disord, 50(12). doi:10.1007/s10803-020-04476-6

  • L. Roche, D. Adams, M. Clark (2021). "Research priorities of the autism community: A systematic review of key stakeholder perspectives". Autism, 25(2). doi:10.1177/1362361320967790

  • A. Melissa Romualdez, B. Heasman, Z. Walker, J. Davies, A. Remington (2021). "'People Might Understand Me Better': Diagnostic Disclosure Experiences of Autistic Individuals in the Workplace". Autism in Adulthood, 3(2). doi:10.1089/aut.2020.0063

  • E. Rothman, L. Graham Holmes, R. Caplan*, M. Chiang, B. Haberer, N. Gallop, R. Kadel, M. Person, A. Sanchez, E. Quinn, P. Wharmby (2022). "Healthy Relationships on the Autism Spectrum (HEARTS): A feasibility test of an online class co-designed and co-taught with autistic people". Autism, 26(3). doi:10.1177/13623613211069421

  • G. Rowe, H. Nevin (2014). "Bringing 'patient voice' into psychological formulations of in‐patients with intellectual disabilities, autism spectrum disorder and severe challenging behaviours: report of a service improvement pilot". Brit J Learn Disabil, 42(3). doi:10.1111/bld.12026

  • J. Ryan*, H. Brown*, A. Borden, C. Devlin, A. Kedmy, A. Lee, D. Nicholas, B. Kingsley, S. Thompson-Hodgetts (2024). "Being able to be myself: Understanding autonomy and autonomy-support from the perspectives of autistic adults with intellectual disabilities". Autism, 28(12). doi:10.1177/13623613241254432

  • M. Savage, B. Tomaszewski, K. Hume (2022). "Step It Up: Increasing Physical Activity for Adults With Autism Spectrum Disorder and Intellectual Disability Using Supported Self-Management and Fitbit Technology". Focus Autism Other Dev Disabl, 37(3). doi:10.1177/10883576211073700

  • R. Schalock, K. Keith (2012). "Quality of Life Questionnaire". PsycTESTS Dataset. doi:10.1037/t10624-000

  • H. Scott, S. Havercamp (2018). "Comparison of Self- and Proxy Report of Mental Health Symptoms in People With Intellectual Disabilities". Journal of Mental Health Research in Intellectual Disabilities, 11(2). doi:10.1080/19315864.2018.1431746

  • R. Christopher Sheldrick, E. Neger, D. Shipman, E. Perrin (2012). "Quality of life of adolescents with autism spectrum disorders: concordance among adolescents' self-reports, parents' reports, and parents' proxy reports". Qual Life Res, 21(1). doi:10.1007/s11136-011-9916-5

  • V. Shepherd (2016). "Research involving adults lacking capacity to consent: the impact of research regulation on 'evidence biased' medicine". BMC Med Ethics, 17(1). doi:10.1186/s12910-016-0138-9

  • K. Shogren, A. Bonardi, C. Cobranchi, G. Krahn, A. Murray, A. Robinson, S. Havercamp, I. (2021). "State of the Field: The Need for Self‐Report Measures of Health and Quality of Life for People With Intellectual and Developmental Disabilities". Policy Practice Intel Disabi, 18(4). doi:10.1111/jppi.12386

  • E. Skaletski, L. Bradley, D. Taylor, B. Travers, L. Bishop (2021). "Quality-of-Life Discrepancies Among Autistic Adolescents and Adults: A Rapid Review". The American Journal of Occupational Therapy, 75(3). doi:10.5014/ajot.2021.046391

  • S. Stans, R. Dalemans, L. de Witte, A. Beurskens (2019). "Using Talking Mats to support conversations with communication vulnerable people: A scoping review". TAD, 30(4). doi:10.3233/tad-180219

  • R. Tennant, L. Hiller, R. Fishwick, S. Platt, S. Joseph, S. Weich, J. Parkinson, J. Secker, S. Stewart-Brown (2007). "The Warwick-Edinburgh Mental Well-being Scale (WEMWBS): development and UK validation". Health Qual Life Outcomes, 5(1). doi:10.1186/1477-7525-5-63

  • R. Tesfaye, V. Courchesne, A. Yusuf, T. Savion-Lemieux, I. Singh, K. Shikako-Thomas, P. Mirenda, C. Waddell, I. Smith, D. Nicholas, P. Szatmari, T. Bennett, E. Duku, S. Georgiades, C. Kerns, T. Vaillancourt, A. Zaidman-Zait, L. Zwaigenbaum, M. Elsabbagh (2019). "Assuming ability of youth with autism: Synthesis of methods capturing the first-person perspectives of children and youth with disabilities". Autism, 23(8). doi:10.1177/1362361319831487

  • A. Thurm, A. Halladay, D. Mandell, M. Maye, S. Ethridge, C. Farmer (2022). "Making Research Possible: Barriers and Solutions For Those With ASD and ID". J Autism Dev Disord, 52(10). doi:10.1007/s10803-021-05320-1

  • L. Tilley, S. Ledger, C. de Haas (2020). "Enabling People with Profound and Multiple Learning Disabilities to Belong in Public and Community Archive Collections". Belonging for People with Profound Intellectual and Multiple Disabilities. doi:10.4324/9780429260711-16

  • B. Tomaszewski, M. Savage, K. Hume (2022). "Examining physical activity and quality of life in adults with autism spectrum disorder and intellectual disability". J Intellect Disabil, 26(4). doi:10.1177/17446295211033467

  • R. Tozer, K. Atkin, A. Wenham (2014). "'My brother likes meeting new people, but don't ask him any direct questions': involving adults with autism plus learning disability in a qualitative research project". Brit J Learn Disabil, 42(4). doi:10.1111/bld.12073

  • B. Tsang, C. Nga Wing Leung, R. Won Shing Chan (2022). "A feasibility study on social competence intervention for Chinese adolescents and adults with comorbid autism spectrum disorder and intellectual disability". Research Intellect Disabil, 35(5). doi:10.1111/jar.12998

  • J. Vorhaus (2015). "Giving Voice to Profound Disability". Routledge

  • E. Walsh, J. Holloway, H. Lydon, A. McGrath, T. Cunningham (2019). "An Exploration of the Performance and Generalization Outcomes of a Social Skills Intervention for Adults with Autism and Intellectual Disabilities". Adv Neurodev Disord, 3(4). doi:10.1007/s41252-019-00125-x

  • E. Walsh, H. Lydon, J. Holloway (2020). "An Evaluation of Assistive Technology in Determining Job-Specific Preference for Adults With Autism and Intellectual Disabilities". Behav Analysis Practice, 13(2). doi:10.1007/s40617-019-00380-3

  • K. Walton, G. Krahn, A. Buck, R. Andridge, L. Lecavalier, J. Hollway, D. Davies, L. Eugene Arnold*, S. Havercamp (2022). "Putting 'ME' into measurement: Adapting self-report health measures for use with individuals with intellectual disability". Research in Developmental Disabilities, 128. doi:10.1016/j.ridd.2022.104298

  • C. Wang, M. Ann Burris (1997). "Photovoice: Concept, Methodology, and Use for Participatory Needs Assessment". Health Educ Behav, 24(3). doi:10.1177/109019819702400309

  • K. Paul Wright (2013). "Cognitive behavioural therapy for anxiety in a man with Autism Spectrum Disorder, Intellectual Disability, and social phobia". Advances in Mental Health and Intellectual Disabilities, 7(5). doi:10.1108/amhid-06-2013-0040

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