Tools for Detecting Ageing in People with Autism Spectrum Disorder: A Scoping Review
Abstract
1. Introduction
2. Methods
2.1. Design and Research Question
2.2. Search Strategy
2.3. Inclusion and Exclusion Criteria
2.4. Study Selection
2.5. Quality Appraisal
2.6. Data Extraction
3. Results
3.1. Tools Used in People with ID Functional Assessment Tools
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- Waisman Activities of Daily Living Scale (W-ADL), adapted for adults with developmental disabilities [47]. The W-ADL aims to measure the level of independence in performing typical daily activities including dressing, grooming, housework, meal-related activities, and activities outside the home [30].
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- Resident Assessment Instrument-Home Care (RAI-HC) [52]. This is a standardised assessment tool to assess the health status of long-stay home care clients, the need for care, and basic information about housing and informal caregivers [53]. The RAI-HC includes elements related to demographic characteristics, home environment, functioning, health, medications, informal support, and formal health services [34,35].
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- Hauser Ambulation Index (AI). This assesses the time and degree of assistance needed to walk 25 feet (independently, with a walker or wheelchair, or unable to move independently) [54].
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- Short Physical Performance Battery (SPPB). It is one of the most common measures of physical performance in the ageing population [56]. The SPPB consists of three subtests: balance (standing with feet together, in semi-tandem, and tandem positions), leg strength (rising from and sitting back down in an armless chair five times as quickly as possible), and walking speed over 4 m at a normal pace [26].
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- Modified Back-Saver Sit and Reach (MBSSR), for measuring flexibility. This is an extended and modified version of the sit-and-reach test with back support [29,62]. It is executed unilaterally on a Swedish bench, where a 30-cm measuring ruler is placed, placing the unassessed leg on the ground with a hip flexion of approximately 90º [29,36,37].
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- Grip Strength (GS) [65], for measuring the grip force of the dominant hand, typically using dynamometry. For the seated patient, the dominant arm is assessed by flexing it to 90 degrees and holding the dynamometer while performing a maximum grip for three to five seconds, followed by a recovery time of 30 s between three attempts, taking into account the best result [29,36,37].
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3.2. Mental Assessment Tools
Dementia Screening Tests
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- Montreal Cognitive Assessment (MoCA) [67]. This has been designed to assess mild cognitive dysfunctions. This instrument examines the following skills: attention, concentration, executive functions (including the ability to abstract), memory, language, visuoconstructive skills, calculation, and orientation [28].
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- Wechsler Memory Scale [WMS-III] [69,70]. The WMS-III is designed to assess the main aspects of memory functioning in adults aged between 16 and 89 years. It assesses episodic declarative memory—the ability to consciously store and retrieve specific aspects of information related to a particular situation or context—as well as working memory. The revised version of the WMS-III, the WMS-IV, incorporates the Brief Test for the Assessment of Cognitive Status (BCSE) as an additional test [45].
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- World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0) [75]. This instrument measures the health and disability of adults over 18 years of age within a clinical or population context. It captures an individual’s level of functioning across six main life domains: comprehension and communication (cognition), movement (mobility), self-care (ability to maintain personal hygiene, dress, eat, and live independently), interpersonal interactions (social and interpersonal functioning), life activities (home, work, or school activities), and societal participation (engagement in family, social, and community activities) [39].
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- Diagnostic Interview for Mental Disorders - Short Version (Mini-DIPS) [78]. The Mini-DIPS is the short form of this structured interview, designed according to DSM-IV and ICD-10 criteria, to assess current comorbidity (within 6 months) and covers the following disorders: anxiety, affective, somatisation, obsessive-compulsive, post-traumatic stress, acute stress, dissociative, and eating disorders [39].
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3.3. Biomedical/Clinical Assessment Tools
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- Comorbid conditions. Sources include medical records, biological controls, and medical examinations. The physical examination covers cardiovascular, vascular, pulmonary, abdominal, neurological, ear, nose, and throat (ENT), skin, lymph nodes, thyroid, and assessment for orthostatic hypotension [8].
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- Anthropometry. This covers height, weight, and body mass index (BMI; kg m−2) [26].
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- Hospitalisation occurrences. Hospitalisation is defined as a stay of at least one day in a standard hospital [38].
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- Assessment of the pace of ageing. This includes ageing biomarkers [86,87], facial ageing, and perceived health. Nineteen biomarkers cover the main aspects of ageing: body mass index, waist-to-hip ratio, glycosylated haemoglobin, leptin, mean arterial pressure, cardiorespiratory fitness, forced expiratory volume in 1 s (FEV1), FEV1/forced vital capacity ratio, total cholesterol, triglycerides, high-density lipoprotein cholesterol, apolipoprotein B100/A1 ratio, lipoprotein (a), creatinine clearance, urea nitrogen, C-reactive protein, white blood cell count, average periodontal attachment loss, and affected tooth decay or surfaces. Perceived health is assessed through self-reports, informants’ impressions, and interviewer’s impressions [7].
3.4. Social Valuation Tools
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3.5. Other Domains
3.5.1. Fragility
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- Intellectual Disability-Frailty Index (ID-FI) and ID-FI Short Form. In the Healthy Ageing and Intellectual Disability (HA-ID) study, baseline data were collected across three subtopics: physical activity and fitness, nutrition and nutritional status, and mood and anxiety. A practical tool was developed to assess frailty in individuals with ID [38].
3.5.2. Risk of Falls
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- The Johns Hopkins Fall Risk Assessment Tool (JHFRAT) [89]. This composite scale comprises eight areas of assessment, classifying each risk factor for falls as follows: previous defining situations of risk, which include immobilisation (low risk), history of falls (high risk), history of falls during hospitalisation (high risk), and whether the patient is classified as high risk according to the protocols (high risk); age; medication; healthcare equipment; mobility; and cognition [26].
3.5.3. Quality of Life
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- World Health Organization Quality-of-Life Scale (WHOQOL-BREF) [90]. This is an abbreviated version of the original WHOQOL tool. It contains 26 items: two related to overall quality of life and satisfaction with health, and 24 grouped into four areas: physical health, psychological health, social relations, and environment [25].
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- Novel QoL measures (QOL1 and QOL2) [96]. This is an indirect assessment of the ‘autism-friendly environment’ and includes 5 items: staff/caregivers’ knowledge of autism, the application of structured education, the implementation of an individual treatment/training plan, the degree to which daily living/employment is appropriate to an individual’s ability, and the overall level of quality of life [25].
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- Autism-Specific Quality of Life Questionnaire (ASQoL) [33]. This is a set of nine items developed to specifically assess the quality of life in autistic individuals. It serves to complement general quality of life instruments, such as the WHOQoL-BREF, by capturing aspects of well-being that are particularly relevant to the autistic population [41].
4. Discussion
Limitations and Strengths
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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| INCLUSION |
| Studies including adults aged 40 years or older with ASD or ID |
| EXCLUSION |
| Pathology: Down syndrome, Alzheimer’s and other dementias, Hunter’s disease, cancer, Rett syndrome, COVID-19 |
| Life stage: childhood stage |
| Type of study: experimental with animals, study protocol, case study, intervention studies |
| Topic of study: brain structures, palliative care in people with intellectual disabilities, caregivers, diagnostic tools and characteristics of ASD, assessment of isolated cognitive function, socio-health resources |
| Author (Year)/Country | Study Design | Assessment | Participants and Range Years or Mean Age | Key Findings |
|---|---|---|---|---|
| Ayres et al. (2018)/UK [25] | Systematic review | WHOQOL-BREF QoL-Q QOLI ComQOL SF-36 SF-12 v.2 QOL1 and QOL2 | N = 959 18–83 years | No comprehensive, autism spectrum disorder–specific quality of life measurement tools have been validated. |
| Choi et al. (2020)/Southeast of the United States [26] | Cohort study | Anthropometrics JHFRAT SF-36 SPPB Accelerometer | N = 80 43 ± 13 years | Adults with ID who experience falls are more likely to need support with ADLs, be older, and have arthritis, rheumatism, and walking problems than adults with ID who do not experience falls. |
| Geurts et al (2020)/Netherlands [27] | Cross-sectional | WAIS IV D-KEFS BADS Zoo Map WCST Adult BRIEF-A | N = 101 60–85 years | Subjective measures offer valuable insight into everyday executive functioning and the experienced problems in an ASC population. |
| Groot et al. (2021)/Netherlands [28] | Case-control | MMSE-NL MoCA-NL | N = 100 30–73 years | There is no difference in performance between people with and without an ASC on the MMSE-NL or MoCA-NL. |
| Hilgenkamp et al. (2010)/Netherlands [29] | Systematic review | BBT BBS POMA I Walking speed GS 30 CST MBSSR ISWT | Older adults (age is not specified) | The following are proposed for measuring physical fitness: BBT, reaction time test, BBS, walking speed, GS, 30 CST, MBSSR, and ISWT. |
| Hwang et al. (2020)/Australia [30] | Cross-sectional | W-ADL SF-12 WHODAS 2.0 | N = 152 40–79 years | Significantly less autistic adults were ‘maintaining physical and cognitive functioning’ and ‘actively engaging with life’ in comparison to controls. The current dominant model of ‘ageing well’ is limited for examining autistic individuals. |
| Lever and Geurts (2016)/Netherlands [31] | Cross-sectional | WAIS III MMSE WMS-III RAVLT COWAT GIT-2 CFQ | N = 236 20–79 years | Age-related differences characteristic of typical ageing are reduced or parallel, but not increased, in individuals with ASD. |
| Maring et al. (2013)/USA [32] | Systematic review and pilot study | Barthel Index FIM POMA I 2-MWT | N = 30 >50 years | The measures are strongly associated and successfully distinguished between participants with an adverse health event in the previous year. |
| Mason et al. (2021)/New Zealand [7] | Cohort design | Pace of ageing: ageing biomarkers, facial ageing, perceived health | N = 915 3–45 years | They found that higher autistic traits were associated with poorer physical health and a faster pace of ageing. |
| McConachie et al. (2018)/UK [33] | Validation study | ASQoLç WHOQoL-BREF | N = 309 18–76 years | A psychometric validation of the World Health Organization measure WHOQoL-BREF was conducted; additionally, the construct validity of the WHO Disabilities module was examined, and nine additional autism-specific items (ASQoL) were developed based on extensive consultation with the autism community. |
| McKenzie (2016)/Ontario Canada [34] | Cohort design | RAI-HC | N = 3034 18–99 years | Frail individuals had greater rates of admission than non-frail individuals. The FI predicts institutionalisation. |
| McKenzie et al. (2015)/Ontario, Canada [35] | Cohort study | RAI-HC | N = 7863 18–99 years | Using the FI to identify frailty in adults with IDD is feasible and may be incorporated into existing home care assessments. |
| Miot et al. (2023)/France [8] | Cohort design | VABS-II Total number of medications DBI Comorbidities DSQIID RSMB | N = 63 25–59 years | Spectrum disorder + intellectual disability individuals can be identified based on their multimorbidity and potentially different ageing trajectories. |
| Oppewal et al. (2014)/Netherlands [36] | Cohort design | BBT BBS Walking speed GS 30 CST MBSSR ISWT | N = 602 >50 years | Physical fitness significantly predicts a decline in daily functioning in older adults with ID. |
| Oppewal et al. (2015)/Netherlands [37] | Cohort design | BBT BBS Walking speed GS 30 CST MBSSR ISWT Lawton IADL | N = 601 >50 years | Physical fitness is found to be an important aspect for IADL. |
| Roestorf et al. (2025)/UK [38] | Cross-sectional | PRMQ EBPM TBPM WHOQOL-BREF | N = 57 23–80 years | QoL was positively associated with TBPM accuracy in non-autistic participants. In addition to confirming previous findings showing that autistic individuals have more significant difficulties with TBPM compared to EBPM, the results suggest that neither difficulties with EBPM nor TBPM appear to adversely affect their overall or health-related QoL. |
| Schmidt et al. (2015)/Germany [39] | Cross-sectional | Mini-DIPS WHODAS 2.0 FLZ | N = 87 Age: mean = 31 | Adults on the autism spectrum without intellectual impairment experience significant functional impairments in social domains, but they are relatively competent in daily living skills. |
| Schoufour et al. (2022)/Netherlands [40] | Longitudinal and case series | ID-FI ID-FI Short Form | N = 982 >50 years | A practical tool to assess the frailty status of people with ID is introduced. |
| Schoufour, Echteld, et al. (2015)/Netherlands [41] | Cohort design | Occurrences of hospitalisation Total number of used medicines Comorbid conditions ID-FI | N = 982 >50 years | The FI was related to an increased risk of higher medication use and several comorbid conditions, although not to falls, fractures, and hospitalisation. |
| Schoufour, Evenhuis, et al. (2014)/Netherlands [42] | Cohort design | Barthel Index Lawton IADL ID-FI | N = 676 >50 years | Increased care during the follow-up was related to a high frailty index score at baseline. |
| Schoufour, Mitnitski, et al. (2014)/Netherlands [43] | Cohort design | Barthel Index Lawton IADL AI GMFCS ID-FI Pedometer | N = 703 >50 years | The FI demonstrated the highest predictive value for individuals with high baseline mobility or independence in IADLs. |
| Schoufour, Mitnitski, et al. (2015)/Netherlands [44] | Cohort design | -ID-FI | N = 982 >50 years | The predictive validity of the FI was strongly associated with 3-year mortality. |
| Torenvliet et al. (2022)/Netherlands [45] | Cohort design | RAVLT WMS-III COWAT GIT-2 CFQ | N = 176 30–89 years | Previously observed difficulties in Theory of Mind and verbal fluency, which appear to persist into older age, were replicated. |
| Torenvliet et al. (2023)/Netherlands [46] | Cohort design | CFQ WAIS III/IV MMSE | N = 464 24–85 years | Autistic individuals diagnosed in adulthood, without intellectual disability, do not seem at risk for accelerated cognitive decline. |
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Ugartemendia-Yerobi, M.; Pereda-Goikoetxea, B.; Trespaderne, M.I.; Lacalle, J. Tools for Detecting Ageing in People with Autism Spectrum Disorder: A Scoping Review. Healthcare 2025, 13, 2640. https://doi.org/10.3390/healthcare13202640
Ugartemendia-Yerobi M, Pereda-Goikoetxea B, Trespaderne MI, Lacalle J. Tools for Detecting Ageing in People with Autism Spectrum Disorder: A Scoping Review. Healthcare. 2025; 13(20):2640. https://doi.org/10.3390/healthcare13202640
Chicago/Turabian StyleUgartemendia-Yerobi, Maider, Beatriz Pereda-Goikoetxea, Maria Isabel Trespaderne, and Jaione Lacalle. 2025. "Tools for Detecting Ageing in People with Autism Spectrum Disorder: A Scoping Review" Healthcare 13, no. 20: 2640. https://doi.org/10.3390/healthcare13202640
APA StyleUgartemendia-Yerobi, M., Pereda-Goikoetxea, B., Trespaderne, M. I., & Lacalle, J. (2025). Tools for Detecting Ageing in People with Autism Spectrum Disorder: A Scoping Review. Healthcare, 13(20), 2640. https://doi.org/10.3390/healthcare13202640

