Barriers and facilitators to achieving employment in mainstream settings in adults with autism spectrum disorder without intellectual developmental disorders: A scoping review.

Autistic people without Intellectual Developmental Disorders (IDD) have a significantly lower employment rate compared to the general population even though employment favors social integration and quality of life. AIMS: To examine the barriers and facilitators to employability in mainstream settings for autistic adults without intellectual disability. METHODS: Following the scoping review guidelines, we searched the Cochrane, PubMed and PsycINFO databases for references published between 01/01/2000 to 01/08/2023. RESULTS: A review of the 44 identified articles suggests the existence of multiple individual and environmental factors influencing job access and retention. CONCLUSIONS: This is the first review to assess the facilitators and barriers to employment support for autistic people without intellectual disability. The results underline the need for studying strategies to promote access to employment and job retention for autistic people. Future research should explore the mediating and moderating factors leading to the improvement of employability of autistic people WIDD.

Burnout among direct support workers of adults with autism spectrum disorder and intellectual disability.

BACKGROUND: Direct support workers (DSWs) accompany adults with autism spectrum disorder (ASD) and intellectual disability (ID) in residential care homes. Such DSWs, without specialised ASD training, are exposed to chronic stress linked to supporting ASD-ID clients and must adjust by coping strategies adapted to the needs of the residents. Nevertheless, difficulties adjusting constitute a burnout risk for DSWs, characterised by high levels of emotional exhaustion, depersonalisation and loss of a sense of personal accomplishment. We aimed to describe the burnout of DSWs who support adults with ASD-ID and to identify personal variables (experience and specialised training for ASD) and transactional variables (perceived stress and coping strategies) that could predict and mediate burnout. METHOD: In total, 125 DSWs accompanying ASD-ID adults on a daily basis were included. Each participant answered four questionnaires measuring burnout, sociodemographic and professional variables, coping strategies and perceived stress. RESULTS: Five per cent of DSWs were in a state of burnout. Eighteen, six and fifty-nine per cent showed high average scores of emotional exhaustion, depersonalisation and loss of a sense of personal accomplishment, respectively. Being older, specialised training in ASD, stress perceived as a challenge and problem-focused coping strategies were associated with low levels of depersonalisation and loss of a sense of personal accomplishment. CONCLUSIONS: Understanding the burnout process of ASD-ID DSWs may require the assessment of the organisational characteristics linked to the quality of life of the DSWs and the recognition of their specific needs when facing difficulties. The necessary ASD-focused training and support depends on an appraisal that would be individualised to adult ASD-ID DSWs.

Multimorbidity patterns and subgroups among autistic adults with intellectual disability: Results from the EFAAR study.

LAY ABSTRACT: Multimorbidity relates to having multiple chronic health conditions. It is a risk factor for poor health and reduces life expectancy. Autistic people have multiple chronic health conditions and die prematurely, especially if they have an intellectual disability (autism spectrum disorder and intellectual disability). Certain pathophysiological processes observed in autism spectrum disorder are common to those related to the genesis and/or maintenance of multimorbidity. Furthermore, multimorbidity could be helpful in better identifying patient subgroups in autism spectrum disorder. It is therefore essential to better characterize multimorbidity and its consequences in the subgroup of autism spectrum disorder + intellectual disability individuals to offer them personalized care. We conducted a preliminary study of 63 autism spectrum disorder + intellectual disability adults to classify them according to their multimorbidity and search for a specific combination of chronic health conditions. We observed high and early multimorbidity in this sample and identified four classes of participants, distinguished by their multimorbidity status, independence and number of treatments. In addition, we observed a dominant combination of multimorbidity in our sample, combining immune dysfunction and gastrointestinal disorders, neurological and joint diseases. These findings support the hypothesis that an altered gut-brain relationship is involved in the risk of autism spectrum disorder, its outcome, and its association with chronic health conditions. Although larger studies are needed, our results suggest that subgroups of autism spectrum disorder + intellectual disability individuals can be identified based on their multimorbidity and potentially different ageing trajectories. A more comprehensive and personalized approach is needed to reduce the burden of multimorbidity and increase the quality of life and life expectancy in autism spectrum disorder/ intellectual disability.

The French Version of the Revised Ritvo Autism and Asperger Diagnostic Scale: A Psychometric Validation and Diagnostic Accuracy Study.

The early recognition of ASD in adults is challenging, in particular due to the lack of appropriate and robust diagnostic tools. We performed a psychometric validation and diagnostic accuracy study of the French version of the RAADS-R on a sample of 305 adults: 105 with ASD without ID, 99 with psychiatric disorders, and 103 non-psychiatric control groups. The French version of the RAADS-R demonstrates good reliability and diagnostic validity, suggesting that it can help clinicians during the diagnostic process in adults with ASD without ID. However, the finding that a two-factor structure better fits the results requires further validation. This study point out the need of further study of RAADS in psychiatric disorders group due to the relatively high false positive rate (55.6%) of ASD.

Comorbidity Burden in Adults With Autism Spectrum Disorders and Intellectual Disabilities-A Report From the EFAAR (Frailty Assessment in Ageing Adults With Autism Spectrum and Intellectual Disabilities) Study.

Background: Autism spectrum disorder (ASD) is an early-onset and lifelong neurodevelopmental condition frequently associated with intellectual disability (ID). Although emerging studies suggest that ASD is associated with premature ageing and various medical comorbidities, as described for ID, data are scarce. Objectives: To determine the comorbidity burden and its association with distinct clinical presentation in terms of ASD severity, adaptive skills, level of autonomy, and drug exposure in a well-phenotyped sample of individuals with ASD-ID-the EFAAR (Frailty Assessment in Ageing Adults with Autism Spectrum and Intellectual Disabilities) cohort. Methods: A total of 63 adults with ASD-ID, with a mean age of 42.9 ± 15.1 years, were recruited from 2015 to 2017 from nine specialized institutions. They underwent detailed clinical examinations, including screening for comorbidities, ASD severity [Childhood Autism Rating Scale (CARS)], adaptive functioning [Vineland Adaptive Behavior Scale II (VABS-II)], autonomy [activities of daily living (ADLs)], and drug use [polypharmacy and the Drug Burden Index (DBI)]. The comorbidity burden was evaluated using the Cumulative Illness Rating Scale (CIRS-G) and its sub-scores [the severity index (CIRS-SI) and severe comorbidity (CIRS-SC)]. Results: We found a large range of comorbidities, including gastrointestinal disorders and mental and neurological diseases. Overall, 25% of our ASD-ID sample had chronic kidney disease with the associated increased cardiovascular risk factors. The comorbidity burden was high (mean CIRS-G total score of 10.6 ± 4.8), comparable with that observed among patients older than those in our population hospitalized in geriatric departments. Furthermore, the comorbidity burden positively correlated with age, decreased autonomy, and polypharmacy. Conclusion: The severity of the comorbidity burden associated with premature ageing in adults with ASD and ID highlight their crucial need of personalized medical care.

Correction to: Fifteen-Year Prospective Follow-Up Study of Adult Outcomes of Autism Spectrum Disorders Among Children Attending Centers in Five Regional Departments in France: The EpiTED Cohort.

The original version of this article unfortunately contained the following omissions.

Fifteen-Year Prospective Follow-Up Study of Adult Outcomes of Autism Spectrum Disorders Among Children Attending Centers in Five Regional Departments in France: The EpiTED Cohort.

There is limited data on long-term outcome of ASD with co-occurring intellectual disabilities (ID) and challenging behaviours in France. The EpiTED period cohort is a 15 years longitudinal study of the developmental trajectories of 281 children initially recruited at mean age of 5 years. Two contrasted developmental trajectories were identified. Low cognitive level, absence of language, and higher ASD scores at baseline were predictive of low growth at follow-up. As adults the participants were predisposed to persistent co-occurring challenging behaviours as well as underlying ID impacting their ability to function independently. The results underscore the need for development of services and supports for adults with ASD in France who may also have already lacked access to adequate interventions and support services.

Adaptive trajectories and early risk factors in the autism spectrum: A 15-year prospective study.

Little is known about long-term outcomes. We investigate the adaptive trajectories and their risk factors in ASD. Data were obtained from 281 children prospectively followed untill adulthood. The final sample consisted of 106 individuals. Vineland scores were collected at baseline (T1), 3 (T2), 10 (T3), and 15 (T4) years later. A group-based method was used to identify homogeneous patterns of adaptive skills trajectories. Results show that among the children initially categorized as autistic, 82.6% remained over the ADOS diagnostic threshold, 11.9% converted to atypical autism, and 5.4% fell under the ADOS threshold. Most atypical autism diagnoses were unstable. Most (81.7%) autistic participants had an ID at inclusion. At T1, 59.3% were nonverbal, but only 39% at T4. Most changes occurred between 4 and 8 years of age. Approximately 25% of participants exhibited a "high" growth trajectory, in which progress continues throughout adolescence, and 75% a "low" growth trajectory, characterized by greater autistic symptoms, intellectual disability, and lower language abilities reflected by high CARS scores, low apparent DQ, and speech difficulties, which mostly, but not always, predicted low trajectories. Our findings suggest that the adaptive prognosis of autism is mostly poor in this cohort, biased toward intellectual disability. However, changes in diagnostic, speech, and adaptive status are not uncommon, even for indivduals with low measured intelligence or apparent intellectual disability, and are sometimes difficult to predict. Autism Research 2018, 11: 1455-1467. © 2018 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Most autism diagnoses given before 5 years of age are stable to adulthood, but one-fifth of individuals are no longer considered to be autistic, even in a cohort biased toward apparent intellectual disability. Conversely, atypical autism diagnoses are mostly unstable. One-third of children who are nonverbal at 5 years are verbal within 15 years, mostly before 8 years of age. Concerning adaptive behavior outcomes, only one-fourth of children exhibit a high-growth trajectory through at least 15 years.

Developmental trajectories of adaptive behaviors from early childhood to adolescence in a cohort of 152 children with autism spectrum disorders.

This study examines change in 152 children over an almost 10-year period (T1: 4.9 (± 1.3) years; T2: 8.1 (± 1.3) years; T3: 15(± 1.6) years) using a group-based, semi-parametric method in order to identify distinct developmental trajectories. Important deficits remain at adolescence in the adaptive abilities of children with Autism spectrum disorders, but changes in adaptive skills show two distinct growth rates. The univariate analysis reveals that low growth trajectories for both social and communication outcome are associated with the following characteristics at age 5: low cognitive and language skills, presence of epilepsy, and severity of autism. The multivariate analysis confirms that risk factors at age 5, were low language and severity of autism for both social and communication outcomes 10 years later, and that hours of early intervention was protective factor for communication.

Outcome of young children with autism: does the amount of intervention influence developmental trajectories?

The study aims were to identify developmental trajectories of young children with autism and investigate their prognostic factors. The participants were 208 children, assessed first at the age of 5 years, followed longitudinally, and reassessed 3 years later. The children's clinical characteristics and the interventions received were recorded. The results indicated two distinct outcome groups with more stability than change. When changes did occur, they pertained to symptom severity (which decreased) and speech level and adaptive behavior (which improved). A logistic regression analysis pointed out two main risk factors (symptom severity and speech level) and two main protection factors (communication skills and person-related cognition). Surprisingly, the amount of intervention (in terms of number of hours) was not related to outcome.

Initial characteristics of psychological development and evolution of the young autistic child.

This longitudinal study assessed multidisciplinary data on 219 children with autistic spectrum disorders from the median age of 5 (Time 1) to 8 years old (Time 2). The evolution of psychological and adaptive data was subjected to cluster analysis. Four clinically meaningful clusters emerged. The first group (21%) demonstrated the most important psychological transformations between the two times of the research. The second group (24%) made progress but less than group 1. The third and biggest group (30%) kept the same developmental slope. The fourth group (25%) showed no significant evolution between the two times of the research. This study highlights important differences among children with autism and the necessity of using a developmental view when considering the autistic syndrome.