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Background: Although autism is commonly described in terms of deficits, many autistic individuals have been found to demonstrate exceptional skills. The shift to a strengths-based approach in the field of autism necessitates increased understanding of these skills. Aims: This study examined (1) rates of exceptional skills in autistic school-age children as reported by parents and teachers, (2) associations between exceptional skills, autism severity and intellectual disability and (3) correlations between parent and teacher reports of exceptional skills. Method: Parents and teachers of 76 children attending autism-specific schools in Australia completed online questionnaires. Thereafter, 35 parents and teachers who identified their child as having one or more exceptional skills were interviewed by a clinical psychologist. Results: Forty parents (53%) and 16 (21%) teachers reported that their child had at least one exceptional skill (agreement between the parent and teacher reports was low; [kappa] = 0.03, p = 0.74). In comparison, clinical psychologist assessments identified 22 children (29%) as having at least one such skill. No statistically significant relationships were identified between exceptional skills, autism severity and intellectual disability. Conclusion: While different exceptional skills were identified, regardless of children's intellectual functioning or autism severity, parents and teachers varied substantially in their evaluations of these skills. Furthermore, the identified prevalence rates of exceptional skills did not always align with the rates identified in previous studies. The study findings highlight the need for definitional consensus on different types of exceptional skills, and the importance of multiple criteria/multi-instrument approaches in the identification of exceptional skills in autistic children.

One core component of the Paediatric Autism Communication Therapy--Generalised involves supporting parents to change their interaction and communication style with their child. This behaviour change has been found to affect child outcomes. Implementation science methodologies offer a range of opportunities to investigate how interventions are delivered in practice; however, few autism intervention studies have used such designs to explore the behaviour change of parents. We interviewed 27 parents and explored their use of intervention strategies after the Paediatric Autism Communication Therapy--Generalised trial. We employed the Theoretical Domains Framework and Consolidated Framework for Implementation Research to systematically explore a range of barriers and facilitators experienced by the parents associated with parents' characteristics, their context and features of the intervention. Our analysis revealed barriers and facilitators across three themes: Motivating Factors, which was further subdivided into Compatibility and Buy-In and Alignment of Goals and Outcomes; Opportunity and Support; Parent Characteristics. Almost all parents reported continued use of the Paediatric Autism Communication Therapy--Generalised strategies. Facilitators (e.g. parental confidence in using the strategies) and barriers (e.g. child's behaviour) were identified. Consideration of these factors can inform identification of implementation strategies to test in future studies of Paediatric Autism Communication Therapy--Generalised and other parent-mediated early autism interventions.

Research has shown lower rates of employment and independent living in adults with autism. Many of these findings are based on cross-sectional studies, predominantly involving male participants. In a 6-year longitudinal study, we examined determinants of psychosocial outcomes in 917 adults with autism spectrum disorder (425 men, 492 women, mean age 43.5 years). Most were diagnosed in adulthood and had (above) average intellectual abilities. Via a yearly online survey, participants' objective psychosocial functioning (based on employment, independent living and friendship) and subjective well-being were assessed. Averaged across the five waves of the study, 86% of the sample showed a fair to very good level of objective psychosocial functioning. Objective psychosocial functioning and subjective well-being were positively correlated, and both improved over time. Lower intellectual ability, more autism traits, co-occurring psychiatric conditions and younger age predicted poorer objective outcomes. More autism traits and co-occurring psychiatric conditions predicted lower subjective well-being. There were no gender differences in initial levels of, or changes in, objective and subjective outcomes over time. This study has identified important risk/protective factors for psychosocial outcomes across early and middle adulthood. In general, the findings offer a more positive outlook for adults with autism and average to high intellectual abilities.

Over the past four decades there have been significant advances in our understanding of autism, yet services for autistic adults continue to lag far behind those for children, and prospects for employment and independent living remain poor. Adult outcomes also vary widely and while cognitive and language abilities are important prognostic indicators, the influence of social, emotional, familial and many other factors remains uncertain. For this special issue marking the 40th anniversary of DSM-III, the present paper describes the changing perspectives of autism in adulthood that have occurred over this period, explores individual and wider environmental factors related to outcome, and suggests ways in which services need to be changed to improve the future for adults living with autism.

Requests for pathological demand avoidance diagnoses have increased over recent years but pathological demand avoidance remains a controversial issue. We undertook a systematic review of peer-reviewed studies of pathological demand avoidance, using standardised appraisal and synthesis methods, to assess how pathological demand avoidance is identified and to explore the relationships between pathological demand avoidance, autism and other developmental/psychiatric disorders. A search of PsycINFO/PubMed/MEDLINE/Embase identified 13 studies meeting inclusion criteria. Narrative synthesis was chosen due to methodological heterogeneity of the identified studies. Autistic children/adolescents constituted the majority of participants in most studies. Most studies provided clearly defined inclusion criteria together with adequate descriptions of participants and study settings. Almost all studies relied on the parental report of pathological demand avoidance symptoms/diagnosis. Identification of pathological demand avoidance in all studies seemed to be, directly or indirectly, based on the criteria developed by Newson et al. While eight studies used objective criteria for the identification of pathological demand avoidance, the measures used have methodological limitations. Though associations with anxiety have been reported, few studies took account of possible relationships between pathological demand avoidance and other conditions, such as anxiety. Methodological limitations restrict current conclusions regarding the uniformity or stability of the constellation of behaviours associated with pathological demand avoidance or the characteristics of individuals displaying them. Clinical implications of current research are discussed.

Longitudinal studies have generally reported poor outcomes in adulthood for the majority of individuals (c.50-60%) with autism. Several factors putatively predict outcome (e.g. IQ), but findings remain mixed. This paper presents an updated meta-analysis of autism outcome studies and extends previous findings with additional analyses (including meta-regression). A total of 4088 records was screened and 18 studies, involving 1199 individuals, were included in the quantitative analysis. Estimated percentages indicated that 20.0% of participants were rated as having a good outcome, 26.6% a fair outcome, and 49.3% a poor outcome. Meta-regression indicated that lower IQ in adulthood was predictive of poor outcome; other meta-regression models did not survive correction for multiple comparisons. Overall, outcomes for autistic people are on average poor, and higher IQ appears to be protective against having a poor outcome. The limitations of current constructs of outcome are discussed.

This study investigated whether sleep problem severity in children with autism spectrum disorder was associated with maternal well-being. Mothers of 234 children reported on their mental health (Kessler Psychological Distress Scale), parenting stress (Parenting Stress Index-4-SF), health-related quality of life (HRQoL; Assessment of Quality of Life-4D) and their child's sleep (Children's Sleep Habits Questionnaire--ASD). Analyses revealed sleep initiation and duration problem severity scores were associated with increased mental health difficulties. Specific child sleep problems were not associated with parenting stress or HRQoL. This study revealed the importance of considering sleep and the family system when assessing maternal well-being. Future research considering parent, child and family factors will be important to informing a family focused approach to mental health.

Background: Williams syndrome anxiety research predominantly focuses on disorder prevalence and symptomatology, categorised using standardised mental health classifications. However, the use of these assessments may not fully capture the phenotypic features of anxiety in Williams syndrome. In this study, we examined characteristics of anxiety using a formulation framework. Method: A semi-structured interview was conducted with thirteen parents of individuals with Williams syndrome (median age: 19, age range: 12-45, 8 females). Results: Various anxiety triggers were reported, including anxiety triggered by phobias, uncertainty and negative emotions in others. The range of described behaviours was diverse with both avoidant and active coping strategies for anxiety management reported. Conclusions: Many of the characteristics described were consistent with findings in the intellectual disability and typically developing literature, although novel information was identified. The study demonstrates the utility of a formulation framework to explore anxiety characteristics in atypical populations and has outlined new avenues for research.

Over the past four decades there have been significant advances in our understanding of autism, yet services for autistic adults continue to lag far behind those for children, and prospects for employment and independent living remain poor. Adult outcomes also vary widely and while cognitive and language abilities are important prognostic indicators, the influence of social, emotional, familial and many other factors remains uncertain. For this special issue marking the 40th anniversary of DSM-III, the present paper describes the changing perspectives of autism in adulthood that have occurred over this period, explores individual and wider environmental factors related to outcome, and suggests ways in which services need to be changed to improve the future for adults living with autism., Author(s): Patricia Howlin [sup.1] Author Affiliations: (1) grid.13097.3c, 0000 0001 2322 6764, Institute of Psychiatry, Psychology and Neuroscience, King's College, , London, UK In the four decades since the publication [...]

Longitudinal studies have generally reported poor outcomes in adulthood for the majority of individuals (c.50-60%) with autism. Several factors putatively predict outcome (e.g. IQ), but findings remain mixed. This paper presents an updated meta-analysis of autism outcome studies and extends previous findings with additional analyses (including meta-regression). A total of 4088 records was screened and 18 studies, involving 1199 individuals, were included in the quantitative analysis. Estimated percentages indicated that 20.0% of participants were rated as having a good outcome, 26.6% a fair outcome, and 49.3% a poor outcome. Meta-regression indicated that lower IQ in adulthood was predictive of poor outcome; other meta-regression models did not survive correction for multiple comparisons. Overall, outcomes for autistic people are on average poor, and higher IQ appears to be protective against having a poor outcome. The limitations of current constructs of outcome are discussed., Author(s): David Mason [sup.1] , Simone J. Capp [sup.1] , Gavin R. Stewart [sup.1] , Matthew J. Kempton [sup.2] , Karen Glaser [sup.3] , Patricia Howlin [sup.4] , Francesca Happé [...]

This study investigated whether sleep problem severity in children with autism spectrum disorder was associated with maternal well-being. Mothers of 234 children reported on their mental health (Kessler Psychological Distress Scale), parenting stress (Parenting Stress Index-4-SF), health-related quality of life (HRQoL; Assessment of Quality of Life-4D) and their child's sleep (Children's Sleep Habits Questionnaire-ASD). Analyses revealed sleep initiation and duration problem severity scores were associated with increased mental health difficulties. Specific child sleep problems were not associated with parenting stress or HRQoL. This study revealed the importance of considering sleep and the family system when assessing maternal well-being. Future research considering parent, child and family factors will be important to informing a family focused approach to mental health., Author(s): Christina A. Martin [sup.1] [sup.2] , Emma Sciberras [sup.2] [sup.3] [sup.4] , Nicole Papadopoulos [sup.1] , Lidia Engel [sup.5] , Harriet Hiscock [sup.2] [sup.3] [sup.6] , Katrina Williams [sup.2] [...]

Background: There are very few mechanistic studies of the long‐term impact of psychosocial interventions in childhood. The parent‐mediated Paediatric Autism Communication Therapy (PACT) RCT showed sustained effects on autistic child outcomes from pre‐school to mid‐childhood. We investigated the mechanism by which the PACT intervention achieved these effects. Methods: Of 152 children randomised to receive PACT or treatment as usual between 2 and 5 years of age, 121 (79.6%) were followed 5–6 years after the endpoint at a mean age of 10.5 years. Assessors, blind to the intervention group, measured Autism Diagnostic Observation Scale Calibrated Severity Score (ADOS CSS) for child autistic behaviours and Teacher Vineland (TVABS) for adaptive behaviour in school. Hypothesised mediators were child communication initiations with caregivers in a standard play observation (Dyadic Communication Measure for Autism, DCMA). Hypothesised moderators of mediation were baseline child non‐verbal age equivalent scores (AE), communication and symbolic development (CSBS) and 'insistence on sameness' (IS). Structural equation modelling was used in a repeated measures mediation design. Results: Good model fits were obtained. The treatment effect on child dyadic initiation with the caregiver was sustained through the follow‐up period. Increased child initiation at treatment midpoint mediated the majority (73%) of the treatment effect on follow‐up ADOS CSS. A combination of partial mediation from midpoint child initiations and the direct effect of treatment also contributed to a near‐significant total effect on follow‐up TVABS. No moderation of this mediation was found for AE, CSBS or IS. Conclusions: Early sustained increase in an autistic child's communication initiation with their caregiver is largely responsible for the long‐term effects from PACT therapy on autistic and adaptive behaviour outcomes. This supports the theoretical logic model of PACT therapy but also illuminates fundamental causal processes of social and adaptive development in autism over time: early social engagement in autism can be improved and this can have long‐term generalised outcome effects. [ABSTRACT FROM AUTHOR]

Extreme demand avoidance (EDA) is increasingly described as part of the autism spectrum and is sometimes diagnosed as Pathological Demand Avoidance (PDA). Yet little is known, about the educational experiences of children with and without EDA behaviours. Using an online survey collecting both quantitative and qualitative data, 211 parents reported on the school experiences of their autistic children. 57 parents had a child with an additional diagnosis of PDA (AUT-PDA); 91 had a child with no diagnosis of PDA but, according to parent report, displayed EDA behaviours (AUT-EDA); and 63 had a child with neither a PDA diagnosis nor EDA behaviours (AUT). Results demonstrated that there were few group differences in terms of the frequency of failed school placements and exclusions. However, children in the AUT-EDA/-PDA groups had higher levels of behaviour that challenges, which were particularly high in those with a PDA diagnosis. There were no significant differences in school exclusions, but the fact that these occurred across all groups is of concern. Qualitative results suggested overwhelmingly negative school experiences for all groups but especially the AUT-EDA and AUT-PDA groups. Parents attributed such experiences to misunderstanding of their children's diagnoses and a lack of targeted support. [ABSTRACT FROM AUTHOR]

One core component of the Paediatric Autism Communication Therapy–Generalised involves supporting parents to change their interaction and communication style with their child. This behaviour change has been found to affect child outcomes. Implementation science methodologies offer a range of opportunities to investigate how interventions are delivered in practice; however, few autism intervention studies have used such designs to explore the behaviour change of parents. We interviewed 27 parents and explored their use of intervention strategies after the Paediatric Autism Communication Therapy–Generalised trial. We employed the Theoretical Domains Framework and Consolidated Framework for Implementation Research to systematically explore a range of barriers and facilitators experienced by the parents associated with parents' characteristics, their context and features of the intervention. Our analysis revealed barriers and facilitators across three themes: Motivating Factors, which was further subdivided into Compatibility and Buy-In and Alignment of Goals and Outcomes; Opportunity and Support; Parent Characteristics. Almost all parents reported continued use of the Paediatric Autism Communication Therapy–Generalised strategies. Facilitators (e.g. parental confidence in using the strategies) and barriers (e.g. child's behaviour) were identified. Consideration of these factors can inform identification of implementation strategies to test in future studies of Paediatric Autism Communication Therapy–Generalised and other parent-mediated early autism interventions. Many early autism interventions teach parents therapeutic strategies to help them adjust their communication style with their children. Research has shown that this behaviour change in parents leads to improvements in child communication. It is, therefore, important to learn what factors support or hinder parents in their use of therapeutic strategies learned in such interventions. This study set out to interview parents who had participated in a research trial of the Paediatric Autism Communication Therapy–Generalised intervention. We interviewed 27 caregivers and explored their use of the strategies up to 2 years after the end of the research trial. Qualitative frameworks were used to inform interview questions and data analysis. These frameworks focused on a range of contextual factors, including parents' characteristics, their context and features of the intervention. Parents reported barriers and facilitators to using Paediatric Autism Communication Therapy–Generalised strategies across three themes: Motivating Factors; Opportunity and Support; Parent Characteristics. One of these themes, Motivating Factors, was further divided into the subthemes Compatibility and Buy-In and Alignment of Goals and Outcomes. Almost all parents reported continued use of the Paediatric Autism Communication Therapy–Generalised strategies. Facilitators included parental confidence in using the strategies and barriers included child's behaviour. Consideration of these factors can inform ways to better support parents in future autism interventions. [ABSTRACT FROM AUTHOR]

Although good quality housing and a socially cohesive neighborhood are associated with a higher well‐being in the general population, housing is a rarely studied topic in autism research. In the present study, we describe the housing situation of a large sample of adults with autism and mostly (above) average intellectual abilities (n = 1429; 17 to 84 years), and examine predictors of independent living, accommodation satisfaction, neighborhood satisfaction, and satisfaction with life based on an online survey. The outcomes of independently living adults were compared with those from a Dutch community sample (n = 929). Nearly 80% of the autistic adults lived independently. Older participants, women, and those with higher self‐reported IQ's were more likely to live independently. Autistic adults living independently were equally satisfied with their accommodation and neighborhood as the comparison group, but were less satisfied with their life in general. In both groups, higher satisfaction with accommodation and neighborhood was associated with higher life satisfaction. We advocate further research to better understand and anticipate the housing needs of the growing group of adults with autism. Lay Summary: The living situation of autistic adults has rarely been studied. We found that 79% of autistic adults with mostly (above) average intellectual abilities lived independently. Women, older adults, and those with higher IQ's were more likely to live independently. They were equally pleased with their house and neighborhood as adults from a Dutch community sample, but autistic adults were less satisfied with their life in general. [ABSTRACT FROM AUTHOR]

Research has shown lower rates of employment and independent living in adults with autism. Many of these findings are based on cross-sectional studies, predominantly involving male participants. In a 6-year longitudinal study, we examined determinants of psychosocial outcomes in 917 adults with autism spectrum disorder (425 men, 492 women, mean age 43.5 years). Most were diagnosed in adulthood and had (above) average intellectual abilities. Via a yearly online survey, participants' objective psychosocial functioning (based on employment, independent living and friendship) and subjective well-being were assessed. Averaged across the five waves of the study, 86% of the sample showed a fair to very good level of objective psychosocial functioning. Objective psychosocial functioning and subjective well-being were positively correlated, and both improved over time. Lower intellectual ability, more autism traits, co-occurring psychiatric conditions and younger age predicted poorer objective outcomes. More autism traits and co-occurring psychiatric conditions predicted lower subjective well-being. There were no gender differences in initial levels of, or changes in, objective and subjective outcomes over time. This study has identified important risk/protective factors for psychosocial outcomes across early and middle adulthood. In general, the findings offer a more positive outlook for adults with autism and average to high intellectual abilities. Previous research has shown that relatively few adults with autism have a paid job or live on their own. However, outcomes also vary a lot and may depend on many different factors. In this study, we examined the level of functioning and happiness of 917 adults with autism (425 men and 492 women) aged 18–65 years. Most of them were of average to high intellectual ability. Over 6 years, we measured whether they had a paid job, close friendships and lived on their own (i.e. their objective functioning). We also measured how happy they felt. Objectively, most autistic adults did fairly to very well. Those with better objective outcomes (e.g. those with paid work) also tended to be happier. Most adults improved in objective functioning and happiness over 6 years. Participants with a lower intellectual ability, more autism traits, mental health problems and younger age had poorer objective outcomes. Participants with more autism traits and mental health problems were less happy. Autistic men and women functioned at similar levels and were equally happy. We found important factors that predict a better (or worse) outcome for autistic adults. Overall, compared with some previous research, our findings give a more positive picture of the outcomes for autistic adults with average to high intellectual abilities. [ABSTRACT FROM AUTHOR]

Background: Williams syndrome anxiety research predominantly focuses on disorder prevalence and symptomatology, categorised using standardised mental health classifications. However, the use of these assessments may not fully capture the phenotypic features of anxiety in Williams syndrome. In this study, we examined characteristics of anxiety using a formulation framework. Method: A semi‐structured interview was conducted with thirteen parents of individuals with Williams syndrome (median age: 19, age range: 12–45, 8 females). Results: Various anxiety triggers were reported, including anxiety triggered by phobias, uncertainty and negative emotions in others. The range of described behaviours was diverse with both avoidant and active coping strategies for anxiety management reported. Conclusions: Many of the characteristics described were consistent with findings in the intellectual disability and typically developing literature, although novel information was identified. The study demonstrates the utility of a formulation framework to explore anxiety characteristics in atypical populations and has outlined new avenues for research. [ABSTRACT FROM AUTHOR]

Lay Abstract: Many early autism interventions teach parents therapeutic strategies to help them adjust their communication style with their children. Research has shown that this behaviour change in parents leads to improvements in child communication. It is, therefore, important to learn what factors support or hinder parents in their use of therapeutic strategies learned in such interventions. This study set out to interview parents who had participated in a research trial of the Paediatric Autism Communication Therapy-Generalised intervention. We interviewed 27 caregivers and explored their use of the strategies up to 2 years after the end of the research trial. Qualitative frameworks were used to inform interview questions and data analysis. These frameworks focused on a range of contextual factors, including parents' characteristics, their context and features of the intervention. Parents reported barriers and facilitators to using Paediatric Autism Communication Therapy-Generalised strategies across three themes: Motivating Factors; Opportunity and Support; Parent Characteristics. One of these themes, Motivating Factors, was further divided into the subthemes Compatibility and Buy-In and Alignment of Goals and Outcomes. Almost all parents reported continued use of the Paediatric Autism Communication Therapy-Generalised strategies. Facilitators included parental confidence in using the strategies and barriers included child's behaviour. Consideration of these factors can inform ways to better support parents in future autism interventions.

Although good quality housing and a socially cohesive neighborhood are associated with a higher well-being in the general population, housing is a rarely studied topic in autism research. In the present study, we describe the housing situation of a large sample of adults with autism and mostly (above) average intellectual abilities (n = 1429; 17 to 84 years), and examine predictors of independent living, accommodation satisfaction, neighborhood satisfaction, and satisfaction with life based on an online survey. The outcomes of independently living adults were compared with those from a Dutch community sample (n = 929). Nearly 80% of the autistic adults lived independently. Older participants, women, and those with higher self-reported IQ's were more likely to live independently. Autistic adults living independently were equally satisfied with their accommodation and neighborhood as the comparison group, but were less satisfied with their life in general. In both groups, higher satisfaction with accommodation and neighborhood was associated with higher life satisfaction. We advocate further research to better understand and anticipate the housing needs of the growing group of adults with autism. LAY SUMMARY: The living situation of autistic adults has rarely been studied. We found that 79% of autistic adults with mostly (above) average intellectual abilities lived independently. Women, older adults, and those with higher IQ's were more likely to live independently. They were equally pleased with their house and neighborhood as adults from a Dutch community sample, but autistic adults were less satisfied with their life in general., (© 2021 The Authors. Autism Research published by International Society for Autism Research and Wiley Periodicals LLC.)