Dataset Information

Quantifying compensatory strategies in adults with and without diagnosed autism.

ABSTRACT: BACKGROUND:There is growing recognition that some autistic people engage in 'compensation', showing few behavioural symptoms (e.g. neurotypical social skills), despite continuing to experience autism-related cognitive difficulties (e.g. difficulties in social cognition). One way this might be achieved is by individuals consciously employing 'compensatory strategies' during everyday social interaction. However, very little is currently known about the broad range of these strategies, their mechanisms and consequences for clinical presentation and diagnosis. METHODS:We aimed to measure compensatory strategies in autism for the first time. Using a novel checklist, we quantified self-reported social compensatory strategies in 117 adults (58 with autism, 59 without autism) and explored the relationships between compensation scores and autism diagnostic status, autistic traits, education level, sex and age at diagnosis. RESULTS:Higher compensation scores-representing a greater repertoire of compensatory strategies-were associated with having an autism diagnosis, more autistic traits and a higher education level. The link between autism diagnostic status and compensation scores was, however, explained by autistic traits and education level. Compensation scores were unrelated to sex or age at diagnosis. LIMITATIONS:Our sample was self-selected and predominantly comprised of intellectually able females; therefore, our findings may not generalise to the wider autistic population. CONCLUSIONS:Together, our findings suggest that many intellectually able adults, with and without a clinical diagnosis of autism, report using compensatory strategies to modify their social behaviour. We discuss the clinical utility of measuring self-reported compensation (e.g., using our checklist), with important implications for the accurate diagnosis and management of autism and related conditions.

SUBMITTER: Livingston LA

PROVIDER: S-EPMC7014718 | biostudies-literature | 2020 Feb

REPOSITORIES: biostudies-literature

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Quantifying compensatory strategies in adults with and without diagnosed autism.

Livingston Lucy Anne LA Shah Punit P Milner Victoria V Happé Francesca F

Molecular autism 20200212 1

<h4>Background</h4>There is growing recognition that some autistic people engage in 'compensation', showing few behavioural symptoms (e.g. neurotypical social skills), despite continuing to experience autism-related cognitive difficulties (e.g. difficulties in social cognition). One way this might be achieved is by individuals consciously employing 'compensatory strategies' during everyday social interaction. However, very little is currently known about the broad range of these strategies, thei ...[more]

PMID: 32051011

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Project description:BackgroundLittle is known about the compensatory profile in autism; that is, people with autism spectrum disorder who show few symptoms in their behavioural presentation, despite continuing to report autism-related cognitive difficulties or differences. Even less is known about the specific compensatory strategies that these individuals use to disguise autism at the behavioural surface, both in the clinic and everyday life. It is also currently unclear whether individuals without a formal autism diagnosis, but experiencing autistic-like difficulties, use similar compensatory strategies, potentially enabling them to sit below the diagnostic threshold. This study aimed to investigate social compensatory strategies, and their effect on diagnosis and clinical outcome, in adults with and without autism.MethodsIn this study, individuals aged 18 years or older who responded to a study advert that was distributed worldwide via social media and the UK National Autistic Society formed a convenience sample. Participants self-reported their use and experiences of compensatory strategies using an online platform. Novel analyses, including a qualitative thematic approach, were used to interpret their responses and gain insight into compensatory strategies in autism.FindingsBetween Oct 19, 2017, and Jan 2, 2018, 136 adults (58 had a clinical diagnosis of autism, 19 self-identified but were not formally diagnosed as autistic, and 59 were not diagnosed or self-identified, but nevertheless reported social difficulties) completed the online study questions. The findings suggested that there are multiple compensatory strategies with distinct characteristics, individual and environmental factors that modulate compensatory strategy use and success, positive (social relationships, independence, employment) and negative (poor mental health, late diagnosis) outcomes associated with compensatory strategy use, and that individuals without a diagnosis use compensatory strategies that are qualitatively similar to individuals with a diagnosis.InterpretationIncreased awareness and measurement of compensatory strategy use in autism should guide future diagnostic guidelines, towards improved diagnostic accuracy and support for people with autism spectrum disorder whose cognitive difficulties are not immediately evident in observable behaviour.FundingUK Medical Research Council and UK National Institute for Health Research.

Project description:Compensatory strategies (behavioral/environmental modifications) can reduce the difficulties of performing daily living activities, fear of falling, and mortality risk. However, individuals vary in their readiness to use strategies. We examined characteristics associated with readiness to use compensatory strategies, the extent to which level of readiness changed from participation in an intervention (Advancing Better Living for Elders (ABLE)) providing compensatory strategies, and factors predictive of change in readiness level.Data from a randomized trial were used. Participants were 148 older adults assigned to the ABLE intervention designed to enhance daily function through compensatory strategy use. Baseline measures included demographic characteristics, functional difficulty level, presence/absence of depressive symptoms, compensatory strategy use, and social support. At initial (2 weeks from baseline) and final (6 months) ABLE sessions, interventionists rated readiness (1 = precontemplation; 2 = contemplation; 3 = preparation; 4 = action/maintenance) of participants to use strategies. Ordinal logistic regression was used to identify baseline characteristics associated with initial readiness rating. A McNemar-Bowker test of symmetry was used to describe change in readiness, and binary logistic regression was used to identify baseline predictors of change in readiness (from initial to final intervention session).At the initial intervention session, 70.3% (N = 104) scored in pre-action (precontemplation/contemplation, preparation), and 29.7% (N = 44) in action/maintenance. Depressive symptomatology (?2(2) = 9.08, p = 0.011) and low compensatory strategy use (F(2, 147) = 8.44, p = 0.001) at baseline were associated with lower readiness levels at initial ABLE session. By final ABLE session, most participants demonstrated greater readiness: 72% (N = 105) in action/maintenance, 28% (N = 41) in pre-action (two participants dropped out). A significant baseline predictor of positive change in readiness (from initial to final session) was higher social support levels (b = 0.10, SE = 0.05, Wald = 4.98, p = 0.026).Whereas presence of depressive symptomatology and lower use of compensatory strategies at baseline were associated with lower readiness at initial intervention session, neither predicted change in readiness level. Thus, mood and prior compensatory strategy use do not effect enhancements in readiness to use strategies provided in an intervention. Baseline social support was the strongest predictor of change in readiness suggesting that interventions may need to involve older adults' social networks to enhance acceptability of compensatory strategy use.

Project description:BackgroundA population segment of autistic adults are under-identified due, in part, to historic changes in criteria for diagnosing autism and diagnostic biases related to gender, socioeconomic status, and other individual characteristics such as intellectual functioning. Some of these individuals, described as the "lost generation", may choose to self-diagnose. Although little is known about this population, it is possible that they share similar self-conceptualizations or internalized stigma as their diagnosed counterparts. This study reports on the structural validity of the Autism Spectrum Identity Scale (ASIS) with individuals diagnosed and self-diagnosed with autism and compares the demographic characteristics, stigma, self-concept, and quality of life of these two groups.MethodsOver 1000 adults diagnosed (n = 893) or self-diagnosed (n = 245) with autism were recruited through organizations serving the autism community to participate in a nationally distributed online survey that included demographic questions and measures for stigma, self-concept, quality of life, and wellbeing. The diagnosed dataset was randomly split with exploratory factor analysis performed on a training dataset. Split-half cross-validation was used to predict the factor structure of the holdout dataset. Then, the full diagnosed dataset structure was used to determine the generalizability of the factor structure to the self-diagnosed dataset. The diagnosed and self-diagnosed were also compared for differences in gender, age, employment status, diagnostic term preference, and factors of self-concept (autism identity and self-esteem), stigma, and quality of life.ResultsFactor analysis of diagnosed participants yielded a four-factor structure, consistent with previous research, with strong split-sample cross-validation and good internal consistency. Factor predictions of the self-diagnosed dataset from the diagnosed dataset ranged from .97 - 1.00 with similar internal consistency. Self-diagnosed participants were more likely to be older, women, or employed and less likely to be students or prefer the term "autism" than those with an autism diagnosis. The groups were remarkably similar in reported stigma, self-esteem, quality of life and in ASIS factors; both groups reported lower quality of life than the general population.ConclusionsThe ASIS demonstrated the same internal structure with both the diagnosed and self-diagnosed. The profile of self-diagnosed participants matches the profile hypothesized for the "lost generation" and others at risk of being under-identified for autism. Both populations appear to be similarly struggling with employment, stigma, and quality of life. Future research should examine whether self-diagnosed individuals meet criteria for autism or could benefit from interventions, programs, or services serving autism communities.

Dataset Information

Quantifying compensatory strategies in adults with and without diagnosed autism.

Publications

Quantifying compensatory strategies in adults with and without diagnosed autism.

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