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The objective of the study was to validate adapted versions of the Glasgow Anxiety Scale for people with Intellectual Disabilities (GAS-ID) simultaneously developed in English and French. A sample of 361 youth with mild to moderate intellectual disability (ID) (M = 15.78 years) from Australia (English-speaking) and Canada (French-speaking) participated in this study. The results supported the factor validity and reliability, measurement invariance (between English and French versions), a lack of differential items functioning (as a function of youth's age and ID level, but not sex in the English-Australian sample), temporal stability (over one year interval), and convergent validity (with global self-esteem and school loneliness) of a bi-factor exploratory structural equation modeling representation of the GAS-ID. The present study supports the psychometric properties of the English-Australian and French-Canadian versions of the adapted GAS-ID.

This study investigated how the school experiences and personal characteristics of youth with Intellectual Disabilities (ID) contribute to their longitudinal trajectories of anxiety. To this end, we relied on a sample of 390 youth with mild (48.2%) to moderate (51.8%) levels of ID, aged from 11 to 22 (M = 15.70), and recruited in Canada (n = 140) and Australia (n = 250). Across three yearly time points, all participants completed self-report measures of anxiety, school climate, and victimization. Our results revealed a slight normative decrease in anxiety over time and showed that experiences of school victimization were associated with higher levels of anxiety (initially and momentarily) and increases in victimization were accompanied by increases in anxiety over time. Perceptions of attending a school that fosters security and promotes learning also tended to be accompanied by lower levels of anxiety (initially and momentarily). Momentary increases in perceptions of attending a school that fosters positive peer interactions were associated with momentary decreases in anxiety, whereas momentary increases in perceptions of attending a school characterized by positive teacher-student relationships and an equitable treatment of all students both led to small momentary increases in anxiety once all other components of student school experiences were considered. The theoretical and practical implications of these results are discussed., (© 2023. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

This study explored the coping experiences of mothers of children with disabilities during the COVID-19 pandemic in Israel. Semi-structured in-depth interviews were conducted with 14 mothers. The data were thematically analyzed to gain in-depth understanding of their coping experiences. The findings indicated that COVID-related restrictions disrupted the family routine and added a significant burden for the mothers as primary caregivers, and for the family system as a whole. Three distinct types of coping experiences arose from the analysis: surviving the crisis, controlling the crisis, and growing out of the crisis. Three key elements differentiated these three types: the perceptions of the meaning of the pandemic for parental roles and of the response of the education and welfare systems to the children's needs - in routine and during COVID-19; coping with the different pandemic challenges; and the implications of both COVID-19 and the mothers' coping strategies for the functional and emotional status of their children, themselves, and family relations. The results are discussed in light of models of family stress and coping, focusing on the tension between the mothers' caregiving role and maternal roles as warranting particular attention by professionals and policymakers., (© 2024. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

People with intellectual and developmental disabilities (IDD) often have higher rates of comorbid mental health conditions compared to the general population. Yet, many people with IDD also have unmet needs for mental and behavioral health services. The aim of this study was to examine how states provided mental and behavior health, and crisis services to people with IDD in their Home- and Community-Based Services (HCBS) programs, the largest funding mechanism for Long-Term Services and Supports (LTSS) for people with IDD in the United States. We analyzed fiscal year (2021) Medicaid HCBS waivers for people with IDD from across the United States to examine if and how they provided mental and behavior health, and crisis services. States projected spending $968.9 million for mental and behavior health, and crisis services for 190,299 people with IDD. Applied behavior analysis services were provided at greater rates than positive behavior supports and other forms of behavior interventions. While most states provided mental and behavior health, and crisis services in their waivers, there were vast inconsistencies in how they did so, across states, waivers, and services. HCBS are a crucial safety net to ensure people with IDD, especially those who also have mental health disabilities, can live and thrive in their communities., (© 2024. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Purpose: Social experiences are consistently associated with psychological health among autistic individuals. However, most extant studies on this topic exclude individuals with autism who have lower IQ or are otherwise unable to self-report. The current study addresses this gap by examining associations of negative peer experiences and social participation with psychological health among autistic youth with low IQ., Methods: An online survey was collected from 268 parents of autistic adolescents and adults ages 15-25. Negative peer experiences included measures of peer victimization and being ignored. Social participation was assessed by the amount of participation and parents' perceptions of whether their youth felt the amount of participation was meeting their needs. Psychological health was assessed by parents' report of their youth's psychological quality of life, as well as whether they felt their son/daughter was currently depressed., Results: Results suggested low rates of social participation in this sample, with relatively high rates of being ignored. Regression analysis found that lower rates of peer victimization and more activities in which parents perceived that the amount of time was meeting their youth's needs was associated with higher psychological quality of life and lower likelihood that parents felt their son/daughter was depressed., Conclusion: Though youth with autism and low IQ are often excluded from interventions aimed at improving social experiences, these findings suggest that promoting positive social experiences and ameliorating negative ones might be an avenue to improving psychological health in this group., (© 2024. The Author(s).)

Purpose: The purpose of this study was to compare antipsychotic use by youth with intellectual/developmental disabilities to youth without IDD as they transitioned from pediatric to adult health care services. In addition, antipsychotic use was compared between youth with different types of IDD (autism, Fetal Alcohol Syndrome, Down syndrome and 'other')., Methods: Population level administrative health data was used to compare the dispensing of antipsychotics for youth aged 15 to 24 years with and without IDD, between 2010 and 2019. Because antipsychotics are associated with metabolic syndrome and type 2 diabetes, we also examined the dispensing data for metformin. In addition, we examined dispensed antipsychotics between different types of IDD. For both dispensing of antipsychotics and metformin, we used multi-variable logistic regression to derive adjusted odds ratios., Results: There were 20,591 youth with IDD and 1,293,791 youth without IDD. Youth with IDD had significantly higher odds of being dispensed an antipsychotic (7.13 (6.82, 7.44)), even when a diagnosis of a psychotic illness was included in the regression. Higher odds were found in all age groups. Youth with IDD also had significantly higher odds of being dispensed metformin (3.739 (3.323, 4.208)) compared to youth without IDD. Youth with autism, FAS and 'other' types of IDD diagnoses all had higher odds of being dispensed an antipsychotic compared to youth with Down syndrome., Conclusion: Compared to youth without IDD, youth with IDD were more frequently dispensed antipsychotics and metformin. These findings have important implications for the health of youth with IDD., (© 2024. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Intellectual disability in India is substantially under-reported, especially amongst females. This study quantifies the prevalence and gender bias in household reporting of intellectual disability by estimating the age-and-gender specific prevalence of the intellectually disabled by education, Socio-Demographic Index (SDI) score, place of residence, (rural/urban) and income of household head. We estimated prevalence (per 100,000) at 179 (95% CI: 173 to 185) for males and 120 (95% CI: 115 to 125) for females. Gender differences declined sharply with increased education, was higher for lower ages and low income and varied little by state development. Under-identification and under-reporting due to stigma are two plausible reasons for the gender differences in prevalence that increase with age., (© 2022. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Our purpose in this study was to further examine the psychometric properties of the Quality of Life for Children with Autism Spectrum Disorder (QOLASD-C) scale. We first investigated the factor structure and the internal consistency of the scale. The bifactor model showed good fit and strong reliability. Second, we used multiple-indicators multiple-causes (MIMIC) modeling to examine the associations between demographic variables and the QOLASD-C dimensions. Results showed differences on overall QOL based on age, race/ethnicity, and autism spectrum disorder severity, but no relationships with gender. All demographic variables were associated with one or all three subscales (i.e., interpersonal relationships, self-determination, emotional well-being) of the QOLASD-C. Third, an optimal cut-off score of 37 was identified. Implications for research and practice are discussed., (© 2022. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

This study proposes a revision (R) of the Center for Epidemiologic Studies Depression Scale for youth with ID (CESD-ID) in English and French. 346 youth (36.02% girls) with mild (51.26%) and moderate (48.78%) ID (11-22 years; M = 15.69), enrolled in secondary schools in Canada (French-speaking; n = 115), and Australia (English-speaking; n = 231), as well as their parents and teachers, participated in this study. Results support the reliability, factor validity, equivalence (sex, ID level, comorbidities, and country), and convergent validity (with youth-, parent-, and teacher-rated measures of depression, anxiety, and loneliness/social isolation) of the CESD-ID-R. The CESD-ID-R allows youth with ID to provide a reliable and valid assessment of their depressive mood and happiness suitable for epidemiological studies., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

This research aimed to translate the original English version of the Psy-Flex, a scale of psychological flexibility, into Chinese and to test its psychometric properties among parents of children with autism spectrum disorder (ASD). Two phases were conducted: (1) translation from English to Chinese (Psy-Flex-C), followed by a semantic equivalence evaluation between two versions, a pre-test, and an evaluation of the Psy-Flex-C in terms of face validity with 20 parents of autistic children, and content validity of the Psy-Flex-C with eight experts. (2) A cross-sectional study with 248 parents of autistic children was conducted for validation, and a subgroup of 50 participants was randomly selected to assess the test-retest reliability at a 2-week interval. The Psy-Flex-C showed satisfactory semantic equivalence with the original version and demonstrated adequate internal consistency (Cronbach's α = 0.84) and test-retest stability (weighted kappa statistic = 0.88). Concurrent validity was supported by a moderate correlation between the Psy-Flex-C and the Comprehensive Assessment of Acceptance and Commitment Therapy Processes (Pearson's r = 0.54, p < 0.01). The Psy-Flex-C showed a significant mean score difference between parents with high and low parenting stress (t = 5.43, p < 0.001). Similar to the original scale, confirmatory factor analysis showed the best fitting one-factor structure of the Psy-Flex-C (X 2 /df = 1.62, p = 0.13, RMSEA = 0.05, GFI = 0.99, CFI = 0.99, TLI = 0.98, SRMR = 0.023). The Psy-Flex-C can be a reliable and valid instrument to self-report psychological flexibility in parents of children with ASD. Future research is recommended to test the Psy-Flex-C using diverse samples from different cultures and contexts to enhance its generalizability., (© 2024. The Author(s).)

Research emphasizes the importance of seamless transitions from Early Behavioral Intervention (EBI) to school-based services, but formal support during this critical period remains limited, leading to decreased parental satisfaction with autism services. This study aimed to systematically document parents' perception of the quality of services received during the transition from EBI to kindergarten, along with the predictors of this perception. The study adopted a prospective longitudinal design and relied on a validated evaluation framework, the Evaluation of the Trajectory in Autism for Parents (ETAP). ETAP allows to investigate five critical determinants (accessibility, continuity, validity, flexibility, empathy) of service quality, as rated by parents (N = 138 families), which were evaluated at three critical periods of the transition: end of EBI, beginning and end of first year of school. Quality ratings indicated generally positive perceptions but showed small to medium effect size decreases over time; validity had the largest decrease. Predictors of quality ratings and changes in ratings differed by phase of the transition and included child characteristics (gender, age, disabilities, challenging behavior), parent characteristics (maternal origin, fluency in the official language of the province, education level), and family characteristics (number of children). This study's comprehensive analysis of service quality determinants and possible risk and protective factors provides insights into improving support for families navigating the transition to school.Keywords: Autism, Early behavioral intervention, School transition, Parental perception, Service quality, Evaluation framework., (© 2024. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Aggression is common in autism and neurodevelopmental disorders, but longitudinal research on aggression is lacking. We longitudinally tracked aggression in 254 individuals from toddlerhood to emerging adulthood. Our sample included participants with a range of cognitive abilities, with 39.9% classified as more-cognitively-abled (MCA; IQ ≥ 70) and 60.1% as less-cognitively-abled (LCA; IQ < 70). Aggression Composite scores were derived from data from the autism diagnostic observation schedule, autism diagnostic interview-revised, and child behavior checklist at ages 2, 9, and 18. Fifty-four percent, 69%, and 42% of the sample showed aggression in toddlerhood, school age, and emerging adulthood, respectively. LCA individuals had higher rates of aggression in school age (80%) and emerging adulthood (58%) compared to MCA individuals (48 and 22%, respectively). Longitudinal aggression profiles revealed distinct patterns of change over time: 31% displayed persistent aggression, 25% increased, 23% decreased, and 13% never displayed aggression. Higher autism symptoms, lower VIQ, NVIQ, and less-developed adaptive skills correlated with more aggression cross-sectionally. Nonverbal IQ and repetitive behaviors related to aggression longitudinally: people in decreasing or absent profiles had higher NVIQ and fewer RRBs than those with persistent or increasing profiles. Participants with aggression at 9 were four times likelier to exhibit aggression at 18. Aggression is common in autism and NDDs, peaking around age 9, and declining in emerging adulthood. Patterns of change varied widely, with evidence that higher NVIQ and fewer RRBs may be protective. Findings have implications for clinical practices, highlighting important developmental periods and high-risk subgroups., (© 2024. The Author(s).)

Research on everyday executive functions in individuals with Down Syndrome (DS) has focused mostly on children and adolescents. The current study examined everyday executive functions in DS adults. 27 DS adults (aged 22.00 to 42.00 years) were tested using the Behaviour Rating Inventory of Executive Function-Adult Informant Version (BRIEF-A). Findings revealed that DS adults exhibited greater impairments in Global Executive Composite (GEC), Working Memory, Plan/Organise, Task-Monitor and the Metacognition Index (MI) relative to typically developing adults in the normative sample. Substantial variabilities were found in all everyday executive function abilities among DS adults. Findings highlight the importance of making comprehensive assessments of everyday executive functions in DS individuals in order to identify problem areas and plan individualised support programmes., (© 2024. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Autistic adults experience high rates of metal health difficulties and face significant barriers to accessing appropriate mental health care. Empirical research and recent professional guidelines emphasise the importance of modifying standard mental health interventions to best meet the needs of autistic adults. This systematic review explored mental health professionals' experiences of adapting mental health interventions for autistic adults. A systematic search was conducted on CINAHL, PsychINFO, PubMed, Scopus, and Web of Science in July 2022. The findings from 13 identified studies were synthesised using thematic synthesis. Three major analytical themes were generated, the unique experience of adapting interventions for autistic clients, factors which facilitate successful adaptations, and challenges to adapting interventions. Each theme contained a number of subsequent sub-themes. Professionals view the process of adapting interventions to be a highly individualised process. A range of personal traits, professional experiences, and systemic, service-based issues were identified in facilitating or challenging this individualised process. Further research regarding adaptations with different intervention models and increased supportive resources are required to enable professionals to successfully adapt interventions for autistic adult clients., (© 2023. The Author(s).)

Co-occurring intellectual/developmental disability (IDD) and overweight/obesity (OW/OB) is an important consideration of IDD psychiatric care. The relationship between OW/OB and comorbid diagnoses of Autism Spectrum Disorder (ASD) and/or IDD remains inadequately described in existing literature. The purpose of this study is to explore these co-occurring diagnoses. Improved understanding of associated comorbidities can guide clinicians toward interventions to minimize complications associated with OW/OB. We conducted a retrospective review of adult patients of a telepsychiatry clinic with IDD or ASD defined by DSM-5. ICD-10 diagnosis of IDD or ASD, demographics, BMI, comorbidities, and current medications were recorded. Binary logistic regression was used to estimate associations between each predictor and the outcomes overweight (body mass index (BMI) ≥ 25 kg/m 2 ) and obesity (BMI ≥ 30 kg/m 2 ). Prevalence of obesity in these 412 adults was 52.4% (95% CI 47.5, 57.3). There was a significant inverse relationship between IDD severity and the odds of each outcome (p < .001). 80.3% of patients were being actively treated with an antidepressant. Patients taking an antidepressant had twice the odds of obesity (adjusted OR 2.03, 95% CI 1.23, 3.41, p = .006). These findings provide a sense of urgency for prevention of OW/OB and its associated medical sequelae. Prevalence of obesity was higher in this sample compared to the general population. The inverse relationship between IDD severity and OW/OB warrants further research examining age, caregiver involvement, and access to care as potential modifiers., (© 2024. The Author(s).)

This study sought to identify the various configurations, or profiles, of internalizing and externalizing behaviors found among a sample of youth with intellectual disabilities (ID). These behaviors were assessed twice over one year, using self, parental, and teacher reports. Six variables were hypothesized to predict profile membership: Parent-child relationship (i.e., warmth and conflict), student-teacher relationship (i.e., warmth and conflict), peer acceptance, and peer victimization. To this end, we conducted Latent Profile Analysis among a sample of 393 youth with ID (aged 11-22 years old) recruited in Canada (French-speaking; n = 142; 49.30% boys) and Australia (English-speaking; n = 251; 67.30% boys). Our results revealed five profiles: (1) Adjusted (13.48%), (2) Mild School-related Difficulties (34.38%), (3) Underestimation of Mild Difficulties (12.40%), (4) High Difficulties (19.45%), and (5) Internalizing Difficulties Unobserved at School (20.19%). These profiles, as well as profile membership, remained stable over time. Lower levels of student-teacher warmth, lower levels of peer acceptance, and higher levels of peer victimization were associated with a higher likelihood of membership into profiles characterized by above-average levels of psychosocial difficulties, especially self-reported. Based on these findings, future interventions addressing internalizing and externalizing behaviors could benefit from focusing on the school environment, notably peer acceptance and student-teacher warmth., (© 2024. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

The purpose of this project was to investigate potential correlates of family life impairment in families of young autistic children. This project incorporated measures of specific child and parent challenges in addition to a commonly used unidimensional measure of autism characteristics. In this way, we could assess whether such challenges explain variance in family life impairment, and whether their inclusion diminish associations between autism characteristics and family life impairment. Cross-sectional data were collected from 564 parents of autistic children aged 2 to 5 years who participated in a larger online study. Participants completed measures on child characteristics (autism characteristics, emotion dysregulation, speaking ability, flexibility, and sleep problems), parent depression, and family life impairment, using the Family Life Impairment Scale (FLIS). Multiple linear regression models were generated to examine whether any of the independent variables were associated with the four domains of the FLIS. Models controlled for child age and sex, parent education, and single-parent homes. All independent variables were associated with impairment in one or more FLIS domains. None of the primary independent variables were significantly associated with positive growth. More overt characteristics and behaviors (e.g., autism characteristics, reactivity, speaking ability, and flexibility) were associated with impairment in domains that reflected a family's ability to navigate the community. However, sleep challenges and parent and child emotional difficulties were most strongly associated with parent impairment. Findings suggests that families may have different needs across contexts and provide new avenues through which they might be better supported., (© 2024. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Purpose: Functioning labels have been used in relation to autistic people and differentiating between support needs. The main purpose of our study was to identify perspectives regarding language about being autistic. In regard to themselves and functioning. Furthermore, we investigated the influential factor of community connectedness on use of language acceptability and functioning labels., Methods: 516 autistic respondents completed our survey. We asked about demographic characteristics, how respondents would like autistic people to be termed in the survey, and their acceptability (person with autism, Aspergers, disorder, conditions, living with autism, autistic). We also asked about respondents? Autistic Community Connectedness, acknowledging the implicit nature of language and identity (Stets & Serpe in New directions in identity theory and research, Oxford University Press, 2016). The main focus of our survey was whether or not to use functioning labels, and the supporting rationale., Results: 97% of respondents stated that they find the term 'autistic' acceptable. Respondents who did see merit in using functioning labels to describe autistic people also reported not necessarily using them about themselves. Community membership was found to impact the participants' language preferences to describe the support needs of autistic people, including the use of functioning labels., Conclusion: The proposed best option for language preferences is not to find consensus but instead, opt for the optimal choice that people find the least offensive or disagreeable. This means using identity-first language and not using functioning labels., (© 2024. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

The pathway for post-diagnostic services for autism tends to be complex, heterogeneous, and fraught with delays. This situation has repercussions for families' experience with care systems, the quality of early interventions, and family adjustment. To date, studies of parents' point of view on autism services have predominantly focused on the diagnostic phase of the services trajectory. The goal of the present study was to investigate the perspective of parents on autism early childhood services within a public healthcare and social services system in a Canadian province (Québec). Participants were 91 parents who completed a structured framework for the evaluation of the quality of services trajectories, the Evaluation of the services Trajectory in Autism by Parents (ETAP; Mello et al., in Research in Developmental Disabilities 133, 2023). Approximately three-quarters of families received interim services (e.g., punctual speech therapy interventions) for which they had overall neutral-to-positive appraisals but viewed as having comparably low validity and continuity. Although all children diagnosed with autism are entitled to receive early behavioral intervention (EBI) dispensed by the public health and social services system, approximately a quarter of families did not receive this service. Families who received EBI evaluated this service positively on all ETAP dimensions. The empathy (i.e., parent-provider relationships) dimension was rated highest for both interim and EBI services. Some systemic, family, and child-related factors were associated with the perceived quality of services for both interim and early childhood services. Our results emphasize the need for services for children and families as soon as possible, both during assessment and after diagnosis., (© 2024. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

The Picture Exchange Communication System (PECS) is an Augmentative and Alternative Communication (AAC) system which is widely used to support children with developmental disabilities. In the present study, we surveyed individuals responsible for implementing PECS in special educational settings in the United Kingdom (N=283). We explored knowledge of and adherence to the  intervention, with a view to identifying training and support needs. Specifically, we examined participants' knowledge, implementation accuracy, training experiences, access to resources, and attitudes towards PECS. We developed hierarchical logistic regression models to explore the association between training experience and both knowledge and use of PECS. We pre-registered our methods, predictions and the analysis plan on the Open Science Framework (OSF).We found considerable variation in practitioner knowledge and implementation of PECS. Formal training predicted greater knowledge and more accurate implementation when practitioner role and the degree of setting support were accounted for. While PECS was rated by a large majority to be effective and practical, many participants identified that time and the availability of resources were barriers to implementation. We also found that the purpose of PECS was not always fully understood by practitioners, and we identified some consistent gaps in knowledge and implementation.  This study contributes new information regarding the real-world  use of PECS in educational settings and offers new insights for supporting practitioners., (© 2024. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

This study investigates the nature of the social interaction profiles observed among youth with intellectual disabilities (ID), defined while considering their relationships with their parents, peers, and teachers, as well as the implication of these profiles for self-esteem, aggressive behaviors, and prosocial behaviors. A sample of 393 youth with mild (48.2%) to moderate (51.8%) levels of ID, aged between 11 and 22 (M = 15.70), was recruited in Canada (n = 141) and Australia (n = 253). Our results revealed four profiles, corresponding to Socially Isolated (23.24%), Socially Integrated (39.83%), Socially Rejected (28.37%) and Socially Connected (8.57%) youth with ID. The socially integrated and connected profiles both presented higher self-esteem, more prosocial behaviors, and less aggressive behaviors than the socially isolated and rejected profiles., (© 2022. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Children with autism spectrum disorder (ASD) and intellectual disability (ID)/global delay (GD) frequently have symptoms of attention-deficit/hyperactivity disorder (ADHD). We describe the practice patterns of developmental behavioral pediatricians (DBPs) in the treatment of children with ASD and coexisting ADHD and compare medication classes for children with and without intellectual disability. In bivariate analyses, we compared demographic characteristics, co-occurring conditions, and medication classes for children with and without intellectual disability. Significantly more patients with ID/GD were prescribed α-agonists than patients without ID/GD, but the difference was no longer significant when controlling for age in logistic regression children with ID/GD had more comorbidities and were more likely to be prescribed more than on psychotropic medication. In conclusion, age rather than ID/GD was associated with medication choice., (© 2022. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Research on long-term planning for adults with Autism Spectrum Disorder (ASD) in India is non-existent. The mixed-methods study examined caregiver's expectations around the future planning of an adult with ASD and the barriers and facilitators to the future planning. The purposive sample included 139 caregivers to adults and adolescents with ASD who were part of the survey and 25 caregivers who participated in in-depth interviews. 40% of caregivers hadn't started planning for the future.The family was considered the ideal place to age, but perceived and objective barriers impacted caregivers' ability to plan for the future. The most common barrier that impacted all domains of long-term care was the fear of the unknown or the fear that none of the plans would fall in place. The study also identified resources and strategies used by parents to plan. Findings from the study can potentially impact policy, advocacy, and practice., (© 2022. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Different atypical social interaction styles (SISs) were defined and tested in children and adolescents with autism spectrum disorder (ASD). Whether these styles can also be distinguished in adults with ASD has not yet been explored. In men with ASD, men with personality disorder (PD), and men from the general population (N = 90), aged 18-65 years, we tested which SISs can be distinguished and how they relate to the presence of PD traits. We found a significant distinction in allocation to atypical SISs between the three groups. This study shows the presence of atypical SISs in adults with ASD, and complements previous SIS findings in children and adolescents with ASD.Trial registration The Netherlands National Trial Register NTR6391. Registered 04 May 2017., (© 2022. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

While Extended Reality (XR) autism research, ranging from Augmented to Virtual Reality, focuses on socio-emotional abilities and autistic children requiring low support, common interventions address the entire spectrum and focus on other abilities, including perceptual abilities. Based on these observations, this paper first addresses common practitioners' interventions, and then suggests XR use cases and guidelines to better support them. To do so, 34 interviews were conducted with stakeholders, mainly including practitioners, and then analyzed. Emerging XR use cases were compared with the findings from two former systematic literature reviews, and emerging design guidelines were compared with the findings from a literature survey that we conducted. Findings suggest that collaborative XR sensory-based and mediation approaches could benefit the entire spectrum., (© 2022. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

The current review examined the use of self-report measures in autistic individuals in the context of psychiatric assessments. It focused on inter-rater agreement, internal consistency, test-retest reliability, and criterion validity with clinical diagnoses. It also gathered information on constructs measured, the nature of the samples, and the quality of the studies. Thirty-six out of 10,557 studies met inclusion criteria. We found that the majority of studies (1) targeted young people with average or above average cognitive abilities, (2) measured anxiety symptoms, and (3) evaluated parent-child agreement. More studies are needed on individuals with lower cognitive abilities, adults, and other constructs. Studies assessing criterion validity and test-retest reliability are also needed., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

This paper investigated the characteristics of mothers of children with a disability who registered for a mental health and wellbeing workshop. The questionnaire measured mental health, health-related behaviours, empowerment, family cohesion, wellbeing and child-related variables. Regression analysis identified factors associated with depressive symptoms and positive wellbeing. Fifty-seven percent of participants (N = 171) had depressive symptoms within the clinical range. Higher symptoms were associated with reduced: empowerment (r = - .39, p < .01); positive-wellbeing (r = - .66, p < .05); and healthy activity (r = - .41, p < .001). Low positive wellbeing (β = .55, p < .001) was the strongest predictor of depressive symptoms. Family cohesion (β = .25, p < .001), was the strongest predictor of positive-wellbeing. Future health and wellbeing interventions that support mothers with high care responsibilities should include psycho-education and strategies to address healthy maternal and family-related behaviour changes., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Parental involvement plays a pivotal role in promoting developmental and educational outcomes for children with autism spectrum disorder (ASD). This study aimed to examine the relationships between social support, parenting stress, and parental involvement by investigating a sample of 245 Chinese parents of children with ASD. Mediation analyses indicated that the relationships between support from family and friends and parental involvement were partially mediated by parenting stress, and support from significant others was directly, positively related to parental involvement. Additionally, support from family and friends moderated the influence of parenting stress on parental involvement in their children's education. The direct, indirect, and buffering effects of social support on parental involvement were discussed finally., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

This study proposes a multi-informant (youth, teachers, and parents) measure of relationship quality with adults for youth with intellectual disabilities (ID). A sample of 395 youth with mild (49.15%) and moderate (50.85%) ID, aged 11-22 (M = 15.82) was recruited in Canada (French-speaking, N = 142), and Australia (English-speaking, N = 253). Results support the reliability, factor validity, discriminant validity (in relation to sex, ID level, country, and comorbidity), convergent validity (depression, anxiety, aggressiveness, and prosocial behaviors), and one-year longitudinal stability of the measure. Youth self-reports provide a complementary perspective on relationship quality with adults relative to teachers' or parents' reports, whereas teachers and parents seem unable to differentiate their own perspective from that of the target youth., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Although previous research has shown that the transition to adulthood may be challenging, there exists a lack of research regarding perspectives of stakeholders on the transition of individuals with Autism Spectrum Disorder (ASD). This study aimed to investigate stakeholders' experiences regarding healthcare services for youth with ASD during their transition. We involved 20 stakeholders, including 17 parents of youth with ASD as well as 3 services providers. The study yielded three major themes including: (a) accessibility and quality of care; (b) tensions and conflicts; and (c) navigation and integrated care. The findings can be used to direct change within the healthcare services towards better practices for youth with ASD and increasing the likelihood of positive health outcomes., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Parenting a child with autism spectrum disorder (ASD) can be tremendously challenging. It is important to identify factors associated with parenting stress. This study examined the indirect effect of parental dispositional mindfulness on their anxiety and depressive symptoms and family quality of life (FQOL) through mindful parenting and then parenting stress. Seventy-nine Chinese parents (24.1% fathers) of children with ASD aged 3-13 years completed self-report questionnaires. Results indicated that higher dispositional mindfulness was associated with higher mindful parenting, which was related to lower parenting stress, and further related to lower anxiety and depressive symptoms and higher FQOL. The findings provide valuable insight into the potential pathways through which general mindfulness and mindful parenting may positively impact parental outcomes., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Our purpose in this study was to validate the Quality of Life for Children with Autism Spectrum Disorder scale. We first conducted an exploratory factor analysis to examine the factor structure. Results suggested that a three-factor model (Interpersonal Relationships, Self-Determination, and Emotional Well-Being) should be retained. Next, we conducted a confirmatory factor analysis to compare a higher-order factor model and additional models. Results showed acceptable model fit for the higher-order factor model. The scale had excellent reliability (α = .90) for the overall scale and for the three subscales (Interpersonal Relationships, α = .87; Self-Determination, α = .81; and Emotional Well-Being, α = .66). The 16-item scale showed convergent and divergent validity. Implications for future research and practice are discussed., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

There is limited research examining the inclusion of autistic people in their local communities. This paper reports on two Australian studies which explored this gap, focusing on both autistic people's experiences and non-autistic people's attitudes towards autistic individuals. Study One was conducted with primarily non-autistic people (n = 2,383), and Study Two with primarily parents and carers of autistic people (n = 1,297 people). The majority of non-autistic adults perceived discrimination against autistic people in the community; consistent with the experiences of autistic people and their carers. Of particular concern was more negative attitudes towards, and experiences of, autistic adults. There is an urgent need to improve society's acceptance and inclusion of autistic people of all ages., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Autistic youth have an increased risk of mental health problems. Despite the efficacy of various psychotherapeutic approaches for autistic youth, they often do not receive these interventions. Research is needed to identify patterns of effective treatment for autistic youth and whether they differ from those used for youth with other neurodevelopmental conditions (e.g., attention-deficit hyperactivity disorder; ADHD). We compared clinicians' (N = 557) knowledge, confidence and practices when treating autistic youth and youth with ADHD. Although ratings were moderately high overall and similar interventions were used for both groups, clinicians were significantly less knowledgeable and confident when supporting autistic clients compared to clients with ADHD. Thus, improving clinician perspectives may help facilitate treatment for autistic youth with mental health problems., Author(s): Caitlyn Gallant [sup.1] , Flora Roudbarani [sup.1] , Alaa Ibrahim [sup.1] , Brenna B. Maddox [sup.2] , Jonathan A. Weiss [sup.1] Author Affiliations: (1) https://ror.org/05fq50484, grid.21100.32, 0000 0004 1936 [...]