School participation of autistic youths: The influence of youth, family and school factors.

LAY ABSTRACT: School-aged youths have a basic human right to participate in educational and recreational activities at school. Yet, autistic youths are at high risk of being excluded from school and from school-based activities. It is important to understand how this occurs, to ensure that all autistic youths have opportunities to participate in school activities that are equal to the opportunities of their non-autistic peers. The present study investigated multiple influences on the school participation of autistic youths, including youth factors (age and autistic traits), family factors (parent education level and parental self-efficacy for supporting their child's schoolwork) and school factors (the impact of problems autistic youths experienced with the physical and social environments of school). Using an online survey, we gathered the views and experiences of the parents of 200 autistic youths aged between 4 and 16 years, in the Netherlands. We found that among the factors, only the impact of problems that autistic youths experienced with the physical environment of school was associated with their school participation. In particular, autistic youths who experienced greater difficulties with the physical environment of school had lower levels of school participation. Our findings highlight the pressing need to modify school environments to better accommodate the needs of autistic youths so that they can participate easily and comfortably.

Two validation studies of a performance validity test for autistic adults.

In two studies we examined the potential of a simple emotion recognition task, the Morel Emotional Numbing Test (MENT), as a performance validity test (PVT) for autism-related cognitive difficulties in adulthood. The aim of a PVT is to indicate non-credible performance, which can aid the interpretation of psychological assessments. There are currently no validated PVTs for autism-related difficulties in adulthood. In Study 1, non-autistic university students (aged 18-46 years) were instructed to simulate that they were autistic during a psychological assessment (simulation condition; n = 26). These students made more errors on the MENT than those instructed to do their best (control condition; n = 26). In Study 2, we tested how well autistic adults performed on the MENT. We found that clinically diagnosed autistic adults and non-autistic adults (both n = 25; 27-57 years; IQ > 80) performed equally well on the MENT. Moreover, autistic adults made significantly fewer errors than the instructed simulators in Study 1. The MENT reached a specificity of ≥98% (identifying 100% of non-simulators as non-simulator in Study 1 and 98% in Study 2) and a sensitivity of 96% (identifying 96% of simulators as simulator). Together these findings provide the first empirical evidence for the validity of the MENT as a potential PVT for autism-related cognitive difficulties.

The factor structure and measurement invariance of the Autism Spectrum Quotient-28: A cross-cultural comparison between Malaysia and the Netherlands.

LAY ABSTRACT: The AQ-28 is a questionnaire measuring autistic traits, that is, traits that are related to Autism Spectrum Conditions, but its reliability in other cultures has not been thoroughly evaluated. We, therefore, tested whether the properties of the AQ-28 are comparable between two countries with different cultures, Malaysia and the Netherlands. A total of 437 Malaysian and 818 Dutch participants completed the AQ-28 online. We measured whether the AQ-28 measures autistic traits similarly in Malaysia and the Netherlands. The AQ-28 measures autistic traits similarly, and the reliability was acceptable and good in the general population of Malaysia and the Netherlands, respectively. However, Malaysians scored higher than Dutch participants. Moreover, 11 AQ-28 items showed cultural bias, indicating that these items are answered/interpreted differently in Malaysia and the Netherlands. Cross-cultural differences in interpreting, reporting, and/or expressing autistic traits highlighted in this study could potentially explain why some items are culturally biased and why Malaysians score higher on these items. The findings of this work imply that cutoff scores derived from one culture should not be generalised to another culture. Moreover, the findings are informative for future development of culturally neutral or appropriate screening and diagnostic tools for autism.

Impact of the COVID-19 Pandemic on Autistic Adults: a Scoping Review.

Purpose of Review: The COVID-19 pandemic and its associated restrictions have had a significant impact on people's everyday lives, including the lives of Autistic adults. We aimed to (a) synthesise all papers currently published on the impact of the COVID-19 pandemic on autistic adults and (b) identify lessons for the care and support of Autistic adults in pandemic and post-pandemic times. Recent Findings: Fifty-five papers met the inclusion criteria. Most studies focused on the pandemic's impact on the wellbeing of Autistic adults. Several studies focused on the use of (telehealth) services or the risk of COVID-19 infection/hospitalisation. Summary: Autistic adults were significantly impacted by the pandemic, both directly as indicated by higher COVID-19 infection and hospitalisation rates, but also indirectly due to severe service disruptions and social restrictions. Even though there were large differences observed both between as well as within individuals in terms of the negative/positive effects of the COVID-19 pandemic, most studies reported a negative effect on Autistic adults' mental health. We draw several lessons from this review for the future care and support of Autistic adults, all of which must be underpinned by participatory research methods, that is, where Autistic community members are actively involved in setting research questions, testing the acceptability of the methods and interpreting and disseminating the results. Supplementary Information: The online version contains supplementary material available at 10.1007/s40474-023-00268-6.

'Autistic person' or 'person with autism'? Person-first language preference in Dutch adults with autism and parents.

LAY ABSTRACT: There are different words to describe people with an autism diagnosis. For instance, we can put the person before autism (e.g. 'person with autism'), or we can put autism before the person (e.g. 'autistic person'). Previous research showed that autistic adults in English-speaking countries generally liked it better when autism is placed before the person. Yet, people also greatly differ in the words they like and dislike. In this study, we examined word preference in Dutch autistic adults (n = 1026; 16-84 years; 57% women) and parents of autistic children (n = 286). Via an online questionnaire, we asked our participants to select one term for autistic people that they liked best. The results showed that most adults with autism (68.3%) and parents (82.5%) preferred to put the person before autism. Younger adults, with a higher intelligence, and with more autistic traits, were a bit more likely to put autism before the person. We conclude that there are large differences in the words that people prefer. Because we found different results in our Dutch participants compared to participants in English-speaking countries, we think that the Dutch language or culture may also play a role in word preference. For now, we advise autism researchers to use both person-first and autism-first language.

Continuity and change in loneliness and stress during the COVID-19 pandemic: A longitudinal study of autistic and non-autistic adults.

Previous studies have suggested that autistic adults may be negatively affected by the COVID-19 pandemic and its associated restrictions. In this study, we examined continuity and change in loneliness and stress, and their predictors, in 448 autistic and 70 non-autistic adults living in the Netherlands. Autistic participants were assessed on three occasions using the de Jong Gierveld Loneliness Scale and Perceived Stress Scale (pre-lockdown (T0), first lockdown (T1), and second lockdown (T2)); non-autistic participants were assessed twice (T1 and T2). Autistic adults' loneliness and stress levels remained stable across all three time points over 8 months, but were consistently higher than those of non-autistic adults. Other predictors of higher loneliness and stress levels at the first lockdown (T1) included low perceived social support and high levels of COVID-19 related worries. Although loneliness and stress were stable at the group level, the wellbeing of some autistic adults worsened over the course of the pandemic, while others improved. For instance, adults with a mental health diagnosis (other than autism) prior to the pandemic were more likely to increase in stress over time, whereas adults with higher perceived social support were more likely to decrease in stress over time (from T1 to T2). Factors contributing to variability in outcome require further examination. Moreover, the relatively high loneliness and stress levels in autistic adults call for attention from clinicians and service providers. LAY SUMMARY: In our study, autistic adults reported feeling more lonely and stressed than non-autistic adults during the COVID-19 pandemic. People who missed support from their social network also felt more lonely and stressed. On average, people did not change substantially in their degree of loneliness or stress over time. Yet, we noted large person-to-person differences in the wellbeing of autistic adults during the pandemic.

A New Real-Life Test for Reciprocity in Autistic Adults: The Interactive Drawing Test.

Impaired social-emotional reciprocity is a defining feature of Autism Spectrum Disorder (ASD). Deficits in reciprocity can be difficult to assess, particularly in adults with average or above average intelligence. The recently developed Interactive Drawing Test (IDT) measures reciprocity in children and adolescents with and without ASD based on spontaneous non-verbal interactions during the joint creation of a drawing. In this study, we examined if the IDT is able to differentiate between 19 normally intelligent adults with ASD and 18 without ASD. The IDT total reciprocity score, including the number of meaningful contributions to objects initially drawn by the examiner, was lower in the autistic adults compared to those without ASD. By assessing both the quantity and quality of spontaneous reciprocal behavior, the IDT was able to identify subtle differences in reciprocal behavior of adults with and without ASD with average intelligence. Even though a larger sample is required to determine its psychometric properties, the IDT appears a promising tool to enrich the diagnostic process of ASD in adults. Impaired social-emotional reciprocity is a defining feature of Autism Spectrum Disorder (ASD). The clinical field lacks sensitive tests for assessing impaired reciprocity. The recently developed Interactive Drawing Test (IDT) for reciprocity was tested in autistic and non-autistic adults. During the IDT, an examiner and participant make a joint drawing, taking turns, without specifying what they will draw. We aimed to investigated whether autistic adults showed less reciprocal behavior on the IDT compared to non-autistic participants. Autistic participants were less likely to jointly draw with the examiner, in particular when the examiner initiated a topic. The IDT revealed subtle but characteristic differences in reciprocal behavior related to ASD, suggesting it may be a promising diagnostic tool.

Autism and chronic ill health: an observational study of symptoms and diagnoses of central sensitivity syndromes in autistic adults.

BACKGROUND: Autistic adults, particularly women, are more likely to experience chronic ill health than the general population. Central sensitivity syndromes (CSS) are a group of related conditions that are thought to include an underlying sensitisation of the central nervous system; heightened sensory sensitivity is a common feature. Anecdotal evidence suggests autistic adults may be more prone to developing a CSS. This study aimed to investigate the occurrence of CSS diagnoses and symptoms in autistic adults, and to explore whether CSS symptoms were related to autistic traits, mental health, sensory sensitivity, or gender. METHODS: The full sample of participants included 973 autistic adults (410 men, 563 women, mean age = 44.6) registered at the Netherlands Autism Register, who completed questionnaires assessing autistic traits, sensory sensitivity, CSS, physical and mental health symptoms. The reliability and validity of the Central Sensitization Inventory (CSI) in an autistic sample was established using exploratory and confirmatory factor analyses. Chi2 analyses, independent t-tests, hierarchical regression and path analysis were used to analyse relationships between CSS symptoms, autistic traits, measures of mental health and wellbeing, sensory sensitivity, age and gender. RESULTS: 21% of participants reported one or more CSS diagnosis, and 60% scored at or above the clinical cut-off for a CSS. Autistic women were more likely to report a CSS diagnosis and experienced more CSS symptoms than men. Sensory sensitivity, anxiety, age and gender were significant predictors of CSS symptoms, with sensory sensitivity and anxiety fully mediating the relationship between autistic traits and CSS symptoms. LIMITATIONS: Although this study included a large sample of autistic adults, we did not have a control group or a CSS only group. We also could not include a non-binary group due to lack of statistical power. CONCLUSIONS: CSS diagnoses and symptoms appear to be very common in the autistic population. Increased awareness of an association between autism and central sensitisation should inform clinicians and guide diagnostic practice, particularly for women where CSS are common and autism under recognised.

Exploring Cultural Differences in Autistic Traits: A Factor Analytic Study of Children with Autism in China and the Netherlands.

Autism spectrum disorders are diagnosed globally, but recognition, interpretation and reporting may vary across cultures. To compare autism across cultures it is important to investigate whether the tools used are conceptually equivalent across cultures. This study evaluated the factor structure of the parent-reported Autism Spectrum Quotient Short Form in autistic children from China (n = 327; 3 to 17 years) and the Netherlands (n = 694; 6 to 16 years). Confirmatory factor analysis did not support the two-factor hierarchical model previously identified. Exploratory factor analysis indicated culturally variant factor structures between China and the Netherlands, which may hamper cross-cultural comparisons. Several items loaded onto different factors in the two samples, indicating substantial variation in parent-reported autistic traits between China and the Netherlands.

The importance of home: Satisfaction with accommodation, neighborhood, and life in adults with autism.

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.

Objective and subjective psychosocial outcomes in adults with autism spectrum disorder: A 6-year longitudinal study.

LAY ABSTRACT: 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.

Evaluating the latent structure of the non-social domain of autism in autistic adults.

BACKGROUND: The social domain of autism has been studied in depth, but the relationship between the non-social traits of autism has received less attention. The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) outlines four criteria that make up the non-social domain including repetitive motor movements, insistence on sameness, restricted interests and sensory sensitivity. There is a lack of research into the relationship between these four criteria. This study aimed to evaluate the relationship between the non-social traits of autism in a large sample of autistic adults. It explored whether these traits are best conceptualised as four distinct factors, or exist along a single dimension. METHODS: Participants included autistic adults from the Netherlands Autism Register. The four components identified within the DSM-5 non-social domain were measured by items from the Adult Routines Inventory, the Autism Spectrum Quotient short and the Sensory Perception Quotient short. Confirmatory factor analysis, as well as exploratory factor analysis and exploratory structural equation modelling, was implemented to examine the relationship between these four criteria. RESULTS: Results indicated that a four-factor model provided the best fit, mapping onto the DSM-5 criteria. These four factors were moderately correlated, suggesting that four distinct, yet related factors best describe the non-social domain of autism. The one-factor model did not provide a good fit, highlighting that the non-social domain of autism is not a unitary construct. LIMITATIONS: The study included autistic adults who were cognitively able to complete the self-report measures. This may limit the generalisability of the findings to those who are less able to do so. CONCLUSIONS: This study provided evidence for the multidimensional nature of the non-social domain of autism. Given only two of the four criteria within the non-social domain need to be endorsed for a diagnosis of autism, there is room for substantial variation across individuals, who will have a unique profile within the non-social domain. The results have implications for our understanding of the heterogeneous nature of autistic traits, as well as for how we conceptualise autism as a diagnostic category. This is important for the provision of diagnosis and support within research and clinical practice.

Sibling Configuration as a Moderator of the Effectiveness of a Theory of Mind Training in Children with Autism: a Randomized Controlled Trial.

This RCT investigated whether participants' sibling configuration moderated the effect of a Theory of Mind (ToM) intervention for children with autism. Children with autism aged 8-13 years (n = 141) were randomized over a waitlist control or treatment condition. Both having more siblings, as well as having an older sibling were related to better outcomes on measures of ToM-related behavior and social cognition, but not ToM knowledge or autistic features in general. The finding that these associations were limited to practical skills addressed in the intervention, seems to indicate that having more siblings and having an older sibling provides enhanced opportunities for children with autism to practice taught skills in the home environment.

Stability and change in social interaction style of children with autism spectrum disorder: A 4-year follow-up study.

Children with autism spectrum disorder (ASD) show atypical social behavior but vary in their social interaction style (SIS), ranging from social aloofness to awkward social approaches. In a 4-year follow-up study, we examined longitudinal stability and change of SIS in children and adolescents with ASD and a normal intellectual ability (n = 55; mean age Time 1: 13 years; mean age Time 2: 17 years). Children's SIS was assessed with a parent questionnaire, the Wing Subtypes Questionnaire. As expected, most participants (69%) showed SIS stability across the 4-year interval. Some participants (18%) shifted to a more typical or more active (but odd) SIS, while others (13%) shifted to a less typical or less active (but odd) SIS. A decrease in ASD symptoms predicted a shift toward a more typical or active SIS, but children's age and receptive verbal ability did not. SISs may be a meaningful way to create ASD subgroups and thus offer a promising research venue to further disentangle the heterogeneous autism spectrum. Autism Res 2020, 13: 74-81. © 2019 The Authors. Autism Research published by International Society for Autism Research published by Wiley Periodicals, Inc. LAY SUMMARY: People with autism spectrum disorder (ASD) demonstrate different social interaction styles (SIS), ranging from social aloofness to awkward social approaches. We examined if and how SIS changes across a 4-year period in 55 children and adolescents with ASD (mean age Time 1 = 13 years; mean age Time 2 = 17 years). Most children (69%) showed the same SIS at both time points, indicating that SIS might be a relatively stable trait across adolescence.

Sex differences in the reciprocal behaviour of children with autism.

Differences in the social limitations of girls compared to boys on the autism spectrum are still poorly understood. Impaired social-emotional reciprocity is a core diagnostic criterion for an autism spectrum disorder. This study compares sex differences in reciprocal behaviour in children with autism spectrum disorder (32 girls, 114 boys) and in typically developing children (24 girls, 55 boys). While children with autism spectrum disorder showed clear limitations in reciprocal behaviour compared to typically developing children, sex differences were found only in the autism spectrum disorder group: girls with autism spectrum disorder had higher reciprocity scores than boys with autism spectrum disorder. However, compared to typically developing girls, girls with autism spectrum disorder showed subtle differences in reciprocal behaviour. The sex-specific response patterns in autism spectrum disorder can inform and improve the diagnostic assessment of autism in females.

Self-Presentation and the Role of Perspective Taking and Social Motivation in Autism Spectrum Disorder.

We compared self-presentation abilities of 132 children and adolescents with autism spectrum disorders (ASD) to those of 41 typically developing (TD) peers, and examined the potential link with their social motivation and perspective taking. Participants introduced themselves to an interviewer in a baseline condition (without incentive) and a self-promotion condition (with incentive). Children with ASD (6-12 years) were just as likely as or even more likely than TD children to highlight personal characteristics that would increase their chances of obtaining the incentive. Thus, they were strategic in their self-presentation. However, adolescents with ASD (12-19 years) were less strategic than TD adolescents as well as children with ASD. We discuss the role of social motivation and perspective taking in children's self-presentation.

Reliability and Validity of the Interactive Drawing Test: A Measure of Reciprocity for Children and Adolescents with Autism Spectrum Disorder.

Poor reciprocity is a defining feature of an autism spectrum disorder (ASD). In the current study, we examined the reliability and validity of the Interactive Drawing Test (IDT), a new instrument to assess reciprocal behavior. The IDT was administered to children and adolescents with ASD (n = 131) and to a typically developing group (n = 62). The IDT had excellent inter-rater reliability and moderate to good test-retest reliability. The results showed clearly distinctive response patterns in the ASD group compared to the typically developing group, independent of verbal IQ and age. Convergent validity of the IDT was low. Sensitivity and the predictive accuracy of the IDT for detailed levels of reciprocal behavior in autism are discussed.

Age related differences of executive functioning problems in everyday life of children and adolescents in the autism spectrum.

Numerous studies investigated executive functioning (EF) problems in people with autism spectrum disorders (ASD) using laboratory EF tasks. As laboratory task performances often differ from real life observations, the current study focused on EF in everyday life of 118 children and adolescents with ASD (6-18 years). We investigated age-related and individual differences in EF problems as reported by parents on the Behavioral Rating Inventory Executive Functions (BRIEF: Gioia et al. in Behavior rating inventory of executive function. Psychological Assessment Resources, Odesse 2000), and examined the association with autism severity. Inhibition problems were mostly found in the youngest group (6- to 8-year-olds), whereas problems with planning where more evident for 12- to 14-year-olds as compared to 9- to 11-year-olds. In a subsample of participants meeting the ADOS ASD cut-off criteria the age related differences in planning were absent, while problems with cognitive flexibility were less apparent in 15- to 18-year-olds, compared to 9- to 11-, and 12- to 14-year olds. EF problems surpassing the clinical cutoff were only observed in 20% (planning) to 51% (cognitive flexibility) of the children and adolescents, and no relation was found with ASD symptom severity. This underlines the heterogeneous nature of ASD.

Verbal fluency in children with autism spectrum disorders: clustering and switching strategies.

This study highlights differences in cognitive strategies in children and adolescents with and without autism spectrum disorders (n = 52) on a verbal fluency task (naming as many words as possible (e.g. animals) within 60 s). The ability to form clusters of words (e.g. farm animals like "cow-horse-goat") or to switch between unrelated words (e.g. "snake" and "cat") was analyzed using a coding method that more stringently differentiates between these strategies. Results indicated that children and adolescents with autism spectrum disorders switched less frequently, but produced slightly larger clusters than the comparison group, resulting in equal numbers of total words produced. The currently used measures of cognitive flexibility suggest atypical, but possibly equally efficient, fluency styles used by individuals with autism spectrum disorders.

Parenting stress and autism: the role of age, autism severity, quality of life and problem behaviour of children and adolescents with autism.

While stress is a common experience for parents caring for a child with a developmental disability, current measures fail to distinguish between general stress in parents and the demands of parenting and perceptions of parenting skills (parenting stress). This study examined differences in 'parenting stress' reported by parents of children with autism and typically developing children. This study examined the role of child characteristics (age, autism severity, child quality of life and problem behaviour) on parenting stress in 150 parents of cognitively able children and adolescents with autism. The results revealed that child hyperactivity was the only factor significantly related to parenting stress in parents of children with autism, overruling measures of autism severity and child quality of life. This finding indicates the significant influence of problematic behaviours on parenting demands and perceptions of parenting skills in parents of children with autism, over other child characteristics conceived as within the parent's control. Study implications for future research are discussed.