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The Caregiver Strain Questionnaire assesses the three dimensions of caregiver strain, namely the objective, subjective externalized and subjective internalized strain. It was validated among caregivers of children with Autism Spectrum Disorder (ASD) in the United States and Mainland China with promising psychometric properties. This study aimed to develop and validate the Chinese (traditional script) version of the Caregiver Strain Questionnaire (C-CGSQ) among 198 caregivers of children with ASD in Hong Kong. The C-CGSQ showed excellent internal consistency (α = 0.958) and test-retest reliability (Spearman's r = 0.966). Concurrent, convergent, divergent validity and a three-factor structure (consistent with previous studies) were established. The C-CGSQ demonstrated promising psychometric properties in measuring caregiver strain among caregivers of Chinese ASD children in Hong Kong. [ABSTRACT FROM AUTHOR]

Research suggests that challenges associated with raising a child with an Autism Spectrum Disorder (ASD) can increase parents' risk for diminished parenting self-efficacy (PSE) and psychological wellbeing. The present study aimed to explore interrelationships between noteworthy predictors of PSE and parental psychological distress, including parental mastery beliefs and the co-parenting relationship amongst 122 Australian parents of children with autism. Results indicated that greater mastery beliefs and more favourable co-parenting relationships predicted greater PSE, and higher PSE predicted less psychological distress. PSE significantly mediated relationships between mastery beliefs and psychological distress, and between the co-parenting relationship and psychological distress. Findings have implications that can aid professionals to more effectively support parents raising children on the autism spectrum. [ABSTRACT FROM AUTHOR]

Objectives: Autism spectrum disorder (ASD) is a neurodevelopmental disorder that includes abnormal communication, repetitive and limiting interests, and social dysfunction. This study aimed to identify the experiences of parents in raising children with ADS in Iran. Methods: A total of 18 parents of children with ASD were selected by purposive and convenient... [ABSTRACT FROM AUTHOR]

A mixed-method approach was used to explore and compare self-forgiveness, guilt, shame, and parental stress in parents of children with autism spectrum disorder (ASD) and parents of neurotypical (NT) children. The data were obtained by the Heartland Forgiveness Scale (Thompson et al., 2005), Guilt and Shame Experience Scale (Maliňáková et al., 2019), Parental Stress Scale (Berry & Jones, 1995) and by open-ended questions. The research sample consisted of 143 parents of children with ASD and 135 parents of NT children from Slovakia. The regression analysis confirmed that guilt, shame, and self-forgiveness explained 23% of the variance in parental stress, while the only significant negative predictor was self-forgiveness. Furthermore, shame mediated the pathway between self-forgiveness and parental stress in parents of children with ASD. Parents of children with ASD experience more shame than parents of NT children. The qualitative analysis obtained a more comprehensive understanding of both groups. Parents of children with ASD mostly experienced shame in regard to their child's inappropriate behavior or it being misunderstood by society, while parents of NT children mostly did not feel ashamed of their parenting. Acceptance, social support, religious beliefs, and love from the child were the most often mentioned factors helping self-forgiveness in parents of children with ASD. We highlight the importance of self-forgiveness as a potential coping mechanism for parental stress and suggest focusing on negative aspects of shame in parents of children with ASD. [ABSTRACT FROM AUTHOR]

Objective: Caregivers of children with Autism Spectrum Disorder (ASD) often experience emotional and psychological distress, as well as disruptions to family life and employment due to the challenges of caring for children with ASD. This study examines the relationship between problem behaviours and caregiver burden among children with ASD. Method: A cross-sectional study using convenience sampling recruited 230 caregivers of children with ASD aged 4 to 18 years from selected autism centres in Kuching, Sarawak. The caregivers completed the Aberrant Behaviour Checklist-2 and the Zarit Burden Interview. Results: Univariate analysis revealed a significant difference in caregiver burden for children with ASD receiving medications (p = 0.013), registered with the Social Welfare Department (p = 0.036), and having siblings with ASD (p = 0.046). About 40% of the children exhibited at least one domain of problem behaviour. More than half of the caregivers (53.9%) experienced burden, with the majority experiencing mild burden. Positive associations were seen between irritability (r = 0.458, p < 0.01), social withdrawal (r = 0.439, p < 0.01), stereotypic behaviour (r = 0.392, p < 0.01), hyperactivity/non-compliance (r = 0.467, p < 0.01), and caregiver burden. Child factors, including the duration of problem behaviour (r = 0.182, p = 0.007), medication use (eta = 0.187, p = 0.005), Social Welfare Department registration (eta = 0.138, p = 0.036), and the presence of siblings with ASD (eta = 0.130, p = 0.046) were associated with caregiver burden. Multiple linear regression showed that hyperactivity/noncompliance significantly predicted caregiver burden. Conclusion: Specific problem behaviours in children with ASD were associated with caregiver burden. These results highlight the need for interventions for the child with ASD and their caregivers. [ABSTRACT FROM AUTHOR]

During the diagnostic evaluation period for autism or intellectual disability (ID), families of young children are at risk for poor adjustment. The present study aimed to document family quality of life (FQOL), along with associated risk and protective factors, during this critical step of families' services trajectory. FQOL was measured in a large sample of families of children recently diagnosed with a neurodevelopmental disorder and examined in relation to the type of services received, children's clinical profile, and family variables. FQOL was related to types of services, children's challenging behavior, parenting stress, and several aspects of family composition and status. These findings highlight a need for mental health support for parents, coaching interventions for challenging behaviors, and family-centered supports. [ABSTRACT FROM AUTHOR]

The number of children diagnosed with autism is increasing around the world. The role of parents is vital in caring for children with autism, but stigma is a challenging and prevalent aspect that families face in raising and caring for them. This integrative review, undertaken by nurse researchers in 2022, synthesized the existing knowledge of current studies about stigma status and the factors relating to stigma among parents of children with an autism spectrum disorder. The electronic databases searched included PubMed, CINAHL (EBSCO), EMBASE, and Scopus, using the keywords "stigmatization," "parents," and "autism." Thirty-six studies without time limits were included in this review, 16 qualitative, 15 quantitative, four mixed-method, and one interventional study. The results indicated that stigma was common among parents of children with autism in all studies. However, there was a difference related to cultural stigma among parents with autism in Western, Asian, and Middle Eastern countries. Both modifiable and unmodifiable factors were associated with the stigma, for example, parents' age, marital status, child's behavior, and social support. Further longitudinal studies on stigma should be conducted in low-resource areas with different caregivers in large sample sizes to identify the prevalence of stigma and stigma changes among parents of children with autism. This review's results provide evidence for further intervention studies that address factors related to reducing stigma among parents of children with autism. Moreover, healthcare professionals, including nurses working with these families, should assess the level of stigma among these parents to provide timely support. [ABSTRACT FROM AUTHOR]

Parents of children with autism spectrum disorder and other disabilities report high levels of distress, but systematically evaluated interventions are few. This study aimed to evaluate the feasibility of a novel, manualized Acceptance and Commitment Therapy group intervention (Navigator ACT) in a sample of 94 parents of children with disabilities. Feasibility was measured by treatment completion, credibility, and satisfaction, and preliminary outcomes by using self-rating scales administered at the baseline, post-intervention, and follow-up. The results imply the intervention is feasible in the context of Swedish outpatient habilitation services. A preliminary analysis of the outcome measures suggests that parents experienced significant improvements in well-being. The results indicate that the treatment is feasible and should be evaluated in a randomized controlled trial. [ABSTRACT FROM AUTHOR]

Recent research indicates that children with autism are at increased risk of maltreatment. We examined news media reports on homicide incidents involving children with autism as victims in the United States between 2000 and 2019. Of the 52 victims studied, 47 (90.4%) were male. Age of victims ranged from 2 to 20 years (mean = 10.4 ± 5.3 years). Parents and other caregivers accounted for 63.5% and 13.5% of the perpetrators, respectively. The leading injury mechanism was gunshot wounds (23.1%), followed by drowning (19.2%), and suffocation, strangulation, or asphyxiation (19.2%). The most commonly cited contributing factor (47.1%) was overwhelming stress from caring for the autistic child. These results underscore the importance of supporting services for caregivers of children with autism. [ABSTRACT FROM AUTHOR]

Parents of children diagnosed with autism spectrum disorder (ASD) report higher levels of stress than parents of typically developing children. Few studies have examined factors associated with parental stress in early childhood. Even fewer have investigated the simultaneous influence of sociodemographic, clinical, and developmental variables on parental stress. We examined factors associated with stress in parents of young children with ASD. Multiple regression models were used to test for associations between socioeconomic indices, developmental measures, and parental stress. Externalizing behaviors, communication, and socialization skills accounted for variance in parental stress, controlling for ASD diagnosis. Results highlight the importance of interventions aimed at reducing externalizing behaviors in young children as well as addressing stress in caregivers of children with ASD. [ABSTRACT FROM AUTHOR]

Background: Parenting a child with Autism Spectrum Disorder can be stressful and result in health consequences for the caregivers, a population that is often overlooked and underserved. While mind-body interventions such as mindfulness yoga can help promote positive health outcomes, limited research has explored the impact of such a program on caregivers of children on the autism spectrum. Objective: The primary objective of this pilot study was to evaluate the effects of a 12-week mindfulness yoga program (MYtime) on perceived stress, anxiety, and depression among urban caregivers of children on the autism spectrum. Methods: Twenty-seven parents were randomized into either MYTime (n = 13) or the control group (n = 14). Perceived Stress Scale (PSS) and Depression, Anxiety, and Stress Scale (DASS) were administered. Results: The MYTime group reported lower stress, depression and anxiety while the control group maintained similar scores across pre- and post-assessment. Following 12 weeks of participation the PSS and DASS scores improved by 25% and 49% respectively for parents in the MYTime group. In comparison, PSS scores worsened by 5% and DASS scores improved by 17% for the Control group. Differences in pre-and post-assessment scores were not significant for either group (P >.05). Conclusion: The results from this pilot study indicate that a mindfulness yoga program could be considered among feasible interventions aimed at improving the health of parents of children on the autism spectrum. [ABSTRACT FROM AUTHOR]

Background: Most autism spectrum disorder (ASD) interventions evaluated child outcomes and ignoring the role of parent and family factors on both the immediate- and long-term effects of therapy. The purpose of this study was to determine the relationship between stigma, parent mental health problems, and quality of life and burden in families of children with ASD in Egypt and its risk factors. Seventy parents of ASD children were recruited from two child intervention centers. Participants were divided into two groups based on burden scale: caregivers of moderate burden (n = 27) and caregivers of severe burden (n = 43). All parents were evaluated for demographic data, zarit Burden Interview, socioeconomic scale, symptom checklist–90 (SCL90), Explanatory Model Interview Catalogue Community Stigma Scale (EMIC-CSS), and the World Health Organization Quality of Life–BREF (WHOQOL-BREF). Results: Half of the parents reported significant stigma, particularly caregivers with a severe burden. Caregivers with severe burden had more depression and about twice the frequency of sensitivity and somatization problems, lower QoL (20%) as compared with caregivers with moderate burden. Parents with ASD had many associate factors such as work, male autistic children and their caregiver, age of children and parents, the severity of the condition, and disease duration with burden, stigma, QoL, and mental health problems. Conclusions: This study linked the interrelationships between increased burden and stigma, impaired quality of life, and parental mental health problems; the presence of one of these variables was found to increase the risk of other variables. [ABSTRACT FROM AUTHOR]

Daily living skill deficits commonly co-occur in individuals with autism spectrum disorder (ASD). These deficits in adolescence are associated with poor outcomes, in both employment and independent living skills as adults. Currently, there are no interventions that directly target daily living skill acquisition in adolescents with ASD without an intellectual disability to facilitate a successful transition to adulthood. In this paper, we discuss the development, refinement, and initial efficacy studies of Surviving and Thriving in the Real World (STRW), a 14-session group treatment for both adolescents with ASD and their parent/caregiver that promotes attainment of critical daily living skills. We summarize initial feasibility studies that have been instrumental in the iterative development of STRW. The structure, core treatment elements, and content of STRW are described in detail. Lastly, we discuss the transition of the in-person STRW intervention to STRW-telehealth, which allows for adolescents with ASD to work on daily living skills in their own home with support from a therapist. [ABSTRACT FROM AUTHOR]

Caring for an individual with autism spectrum disorder (ASD) in ideal circumstances can be stressful, and the Coronavirus disease (COVID-19) pandemic created a high degree of disruption to life and stress to families living with an individual with ASD. We conducted an online survey of families in Michigan that revealed higher levels of stress in caregivers of younger individuals with ASD and those with greater severity of ASD symptoms. Stress around therapeutic service disruption, finances, and illness predominated and greater stress was reported for caregivers of individuals receiving greater intensity of services pre-COVID-19. Respondents voiced concerns about receiving respite care during COVID-19, and those expressing interest in respite also reported greater symptom severity in the person with ASD. [ABSTRACT FROM AUTHOR]

Background: Autism spectrum disorder (ASD) entails varied developmental pathways along the entire lifespan, demanding early and ongoing diverse and responsive interventions to children's needs. This study examined in situ education and development attained by children and youth with ASD in a school with a therapeutic and educational curriculum. Objectives: (1) Construct individual communication profiles in educational and developmental aspects. (2) Examine for associations between variables. (3) Demonstrate the clinical and educational utility of including cognitive-linguistic integrative variables. (4) Showcase how the profiles guide interventions tailored to students' individual needs. Methods: Functional communication profiles (FCPs) of 21 students, aged 5.0–16.8 years, mostly from bilingual middle-high socioeconomic status families, were constructed with input from their educational and therapeutic staff. Students' performance was examined with an array of instruments and tasks, including person and clock drawings, false belief, and bouba-kiki metaphor screens. Qualitative and quantitative analyses were performed to uncover associations, weaknesses, and strengths. Results: The profiles revealed associations between cognitive, linguistic, social, and educational abilities, indicating that some abilities from different domains tend to co-occur. Conclusions: Including cognitive linguistic integrative variables was a novelty that revealed additional aspects of the children's abilities. Staff feedback confirmed the utility of FCPs in providing "a roadmap" to needed individual and common curriculum adjustments. [ABSTRACT FROM AUTHOR]

Services for children with autism spectrum disorder (ASD) and their families have evolved with the advent of the Medicaid waiver, leading to more family-based coordination of care. Evaluating family involvement, the current investigation compared 230 families of children with ASD receiving Medicaid waiver services to a propensity-score matched group of 230 families who were waiting for such services (i.e., registry families). Compared to the registry, waiver families reported more involvement in service planning tasks, but not activities related to future-planning, managing crisis situations, or searching for and securing funding. Additional analyses characterize waiver families as engaging in high levels of coordinating and delivering behavioral interventions for their child. Implications for family burden and future programming for waiver programs are discussed. [ABSTRACT FROM AUTHOR]

This study examined whether child autistic symptoms would heighten parental affective symptoms through evoking enacted stigma from the community (i.e., public and courtesy stigma) and felt stigma within the parents (i.e., vicarious and self-stigma). Cross-sectional questionnaire data were collected from 441 parents of children with autism spectrum disorder. Path analyses showed that social communication and interaction deficits and restricted and repetitive behaviors in child autism were positively associated with public and courtesy stigma. While public stigma was positively associated with parental vicarious stigma, courtesy stigma was positively associated with parental self-stigma. Both vicarious and self-stigma were positively associated with depressive and anxiety symptoms among parents. Findings revealed how child autism could compromise parental well-being through exacerbating the family's stigmatizing experiences. [ABSTRACT FROM AUTHOR]

This study presents findings from a feasibility trial, testing an 8-week psychosocial stigma protection intervention (SOLACE) designed to improve the mental health of parents of autistic children. Seventeen parents were stratified then randomly assigned to either SOLACE (n = 9) or control group (n = 8). Retention and adherence rates were excellent with minimal missing data suggesting SOLACE had good acceptability and feasibility. Quantitative analysis revealed that mental health scores had significantly improved for those who took part in SOLACE compared to no significant changes for control group participants. In addition, changes in secondary outcome measures (e.g. stigma, self-esteem and self-compassion) were in favour of SOLACE. Focus group interviews revealed that SOLACE was acceptable to parents. Results suggest that a full randomised controlled trial is warranted. [ABSTRACT FROM AUTHOR]

Parents of children with Autism experience high levels of stress. Resiliency is the ability to cope and adapt when faced with stressful events. This randomized, waitlist controlled pilot trial examines the feasibility, acceptability, and preliminary efficacy of an adapted virtual mind–body group intervention for parents of children with ASD. The intervention was feasible and acceptable. The immediate treatment group showed no difference in distress and greater improvement in resiliency and stress reactivity/coping relative to the delayed treatment group, (M difference 5.78; p =.038 and M difference 7.78; p =.001 respectively). Findings showed promising feasibility, acceptability, and preliminary efficacy for parents of children with ASD. [ABSTRACT FROM AUTHOR]

Objectives: Parents of children with autism spectrum disorder (ASD) face many unique challenges and experience higher parenting stress than other parenting groups. These parents also experience internalised stigma by association with their ASD affected child, known as affiliate stigma. These factors predict greater psychological distress and subsequently decreased well-being for parents. Recent evidence has suggested that the psychological construct of self-compassion may act as a protective factor against stigma, as well as positively influencing the experiences of parents. Methods: An online survey was conducted with parents of children with ASD (N = 237), administering standardised measures to investigate levels of stigma and self-compassion, as well as psychological outcomes. Results: Self-compassion was positively correlated with subjective well-being and negatively correlated with psychological distress and parenting stress. Hierarchical multiple regression controlled for background factors, known predictors (child symptom severity and social support), and various aspects of stigma. Self-compassion and affiliate stigma significantly added to explained variance as a predictor of well-being, psychological distress, and parenting stress. Conclusions: Self-compassion was found to predict psychological well-being, lower distress, and lower parenting stress. If self-compassion is found to be causally related to these outcomes, interventions aimed at cultivating self-compassion and decreasing affiliate stigma may have benefits for parents of children with ASD. [ABSTRACT FROM AUTHOR]

Objectives: We examined associations between parent-reported stress on the Parenting Stress Index (PSI) and clinical characteristics in children with autism spectrum disorder (ASD) and serious behavioral problems. Methods: The 298 children (259 males, 39 females; mean age 5.8 ± 2.2 years) were participants in one of two multisite randomized trials. The pre-treatment evaluation included standardized assessments of cognitive and adaptive functioning (Vineland Adaptive Behavior Scales) and parent ratings such as the Aberrant Behavior Checklist (ABC). Results: Parents of children above the median on disruptive behavior (ABC Irritability) and social disability (ABC Social Withdrawal) reported higher levels on PSI Parent–Child Interaction than children below the median (Irritability 33.0 ± 7.7 vs 28.4 ± 7.3; Social Withdrawal 33.4 ± 7.5 vs 27.9 ± 7.2, p <.05). Similar findings were observed for the PSI Difficult Child subscale. Bivariate logistic regression identified that these measures as well as greater adaptive functioning deficits (≤median on Vineland Daily Living) predicted parental membership in the upper quartile on the PSI. Stepwise logistic regression models showed that greater severity on ABC Social Withdrawal and greater deficits on Vineland Daily Living uniquely predicted parental membership in the highest quartile on the Parent–Child Interaction PSI subscale (ABC Social Withdrawal odds ratio = 3.4 (95% CI 1.82–6.32); p <.001; Vineland Daily Living odds ratio = 2.6 (95% CI = 1.34–4.87; p <.001). Conclusions: In addition to disruptive behavior, higher levels of social disability and lower levels of adaptive functioning are associated with parental stress on the PSI. [ABSTRACT FROM AUTHOR]

To deal with stress, parents of children with ASD use coping strategies that help to tackle the challenging situations of raising their child. This systematic review examines parental coping strategy's questionnaires, factors which influence these coping strategies, interactions between these strategies and perceived stress and their impact on parental quality of life. According to PRISMA guidelines, an electronic search was conducted on Medline, PsycInfo and Eric: 156 articles were identified and 11 studies were selected. Many types of self-reported questionnaires were used to assess parental coping strategies. Studies highlighted that parents of a child with ASD used more avoidance strategies and less social support-seeking strategies than those of typical children. Furthermore, problem-focused coping protects parental stress and quality of life, that on the contrary, emotion-focused coping is a risk factor for alteration. Our systematic review illustrates the need to adapt psychoeducational interventions for parents of children with ASD. [ABSTRACT FROM AUTHOR]

The purpose of this project was to understand the hopes of parents with children with ASD. Particularly understudied are the hopes parents have for long-term outcomes for their child. A cross-sectional focus group design was used and six focus groups were completed. These groups included parents of (1) preschool aged children who were recently diagnosed, (2) children in early elementary school, (3) children in later elementary school, (4) children in middle school, (5) children in high school, and (6) children who are adults with ASD. Results indicated 77.4% of the data were devoted to hopes for the children's independence, happiness, and skill improvement; increased authentic socially significant relationships; and future employment. [ABSTRACT FROM AUTHOR]

Objectives: Many parents of children with developmental disabilities, including autism spectrum disorders and attention deficit disorders, experience poor well-being and increased anxiety and depression. Very few interventions directly target parents' needs. The peer-delivered HOPE Programme was designed to address this with six weekly group sessions focusing on self-management skills, including goal setting and expressing gratitude.Methods: This pre-post study aimed to examine changes in anxiety, depression, well-being, hope and gratitude, and to explore associations between changes in anxiety and depression and changes in gratitude and hope. Validated measures of depression, anxiety, positive well-being, gratitude and hope were used. Parents of children with a range of developmental disabilities, most commonly autism spectrum disorders, were recruited.Results: Of 137 (86.9% female) recruited, 108 parents completed the course and post-course data. Parents' depression, anxiety, well-being, gratitude and hope all significantly improved between baseline and post-course. Hope and gratitude correlated significantly with depression, anxiety and well-being. Baseline depression, baseline gratitude, post-course hope and gratitude explained 50% of the variance in post-course depression. Reduced work hours, and baseline and post-course hope and gratitude explained 40% of the variance in post-course well-being. Anxiety was not associated to hope nor gratitude at either time point.Conclusions: This study provides initial support for feasibility and potential effect of the peer delivered self-management intervention on parental anxiety and depression. Changes in gratitude and hope account for some change in depression, but not anxiety. A randomised controlled trial is needed to establish efficacy and explore mechanisms of change in-depth. [ABSTRACT FROM AUTHOR]

Parents of children with autism spectrum disorders (ASD) reported higher stress than those of typically developing children. The role of child problem behaviors in the relationship between autism spectrum symptoms and parenting stress is little known. A total of 731 parents of 177 children with ASD and 554 typically developing children in primary schools (6-11 years old) completed an ASD screening survey containing measures of parenting stress and child problem behaviors. While autism spectrum symptoms were positively associated with parenting stress, the relationship was mediated by child problem behaviors. Results suggest neither the severity of autism spectrum symptoms nor knowledge of ASD diagnosis was a primary source of parenting stress. A hypothesized path model was tested using structural equation modeling. [ABSTRACT FROM AUTHOR]

Despite the prevalence of studies showing increased stress among mothers of individuals with autism spectrum disorders, few studies have examined general stress among typically developing siblings. This study used an online survey to compare the levels of self-reported stress between adolescent siblings of individuals with autism spectrum disorder and Down syndrome. Sibling of individuals with autism reported significantly more overall stress than did siblings of individuals with Down syndrome, as well as more stress specifically attributed to the brother/sister with autism. The two groups did not differ on perceived social support from family and friends. In linear regression models, the disability group (autism vs Down syndrome) was significantly related to sibling stress above and beyond target child behavior problems, perceived social support, and demographic factors. These results help shed light on the daily experiences of adolescent siblings of individuals with autism and call for more research into potential interventions to address increased stress levels. [ABSTRACT FROM AUTHOR]

Much research has documented the elevated levels of stress experienced by families of autistic children. Yet remarkably little research has examined the types of support that these families perceive to be beneficial to their lives. This study, co-produced by researchers and school-based professionals, sought to establish these families’ support needs from their own perspectives. In total, 139 parents of autistic children with additional intellectual disabilities and limited spoken communication, all attending an inner-city London school, participated in an initial survey examining parental wellbeing, self-efficacy and the extent to which they felt supported. Semi-structured interviews were conducted with a subgroup of parents (n = 17), some of whom reported in the survey that they felt unsupported, in order to gain their in-depth perspectives. The results from both the survey and the interviews suggested that existing support (particularly from formal support services) was not meeting parents’ needs, which ultimately made them feel isolated and alienated. Parents who were interviewed called for service provision that adopted a relational, family-centred approach – one that understands the specific needs of the whole family, builds a close working relationship with them and ensures that they are supported at times when the parents and families feel they need it most. [ABSTRACT FROM AUTHOR]

We examined predictors of mental health difficulties and wellbeing in caregivers of children with autism in the Pre-school Autism Communication Trial cohort in middle childhood (N = 104). Child’s intellectual disability, daily living skills impairment, elevated emotional and behavioural difficulties, high educational level of caregiver and household income below the median significantly predicted caregivers’ mental health difficulties, but autism severity, child communication skills and family circumstances did not. Lower caregiver mental wellbeing was predicted by elevated child emotional and behavioural difficulties. The need to support the mental health and wellbeing of caregivers of children with autism is discussed in light of the results. [ABSTRACT FROM AUTHOR]

The relative effects of different autism disclosure methods on the perceptions of a mother-child dyad were investigated. Using three conditions, disclosure card, disclosure bracelet, and no disclosure, U.S. community parents (N = 383) were asked 18 questions about their perceptions of the dyad. An ANOVA revealed significant protection from stigma for those in either disclosure condition compared to the no disclosure condition on two factors, Critical of the Mother/Child and Need to Protect Own Child, as well as a single item, Embarrassment for the Mother. These results reinforce findings that disclosure may effectively and efficiently reduce negative perceptions. The availability of multiple, effective methods of disclosure that reduce stigma allows parents to choose the method that best suits their individual preferences. [ABSTRACT FROM AUTHOR]

This study examined the longitudinal associations between child behavior problems, coping strategies, social resources, and parenting stress in mothers of young children with autism spectrum disorder. Participants were 283 mothers who completed self- and child-report measures at the time of diagnosis and 2 years later. Hierarchical multiple regression was conducted to predict overall parenting stress. At diagnosis, the final model indicated that high levels of social support and mothers' use of active engaged coping strategies were associated with lower levels of parenting stress. Conversely, high levels of child externalizing behavior problems, family dysfunction, and mothers' use of disengaged coping strategies were associated with higher parenting stress. Two years later, high levels of parenting stress at diagnosis predicted increased parenting stress. In addition, high or increasing levels of social support predicted a decrease in parenting stress, while high or increasing levels of family dysfunction predicted increased stress. Finally, increased use of disengaged coping strategies and decreased use of active coping strategies over time predicted higher levels of parenting stress. Results are discussed in terms of their implications for the provision of targeted supports that are designed to enhance the personal and social resources available to mothers of children with autism spectrum disorder. [ABSTRACT FROM AUTHOR]

Purpose:A pilot study to identify the predictors of improvement in emotional and behavioural functioning of siblings of children with special needs following participation inSibworkS, a six-week manual-based, cognitive–behavioural group programme. Method:Data from 36 participants from a recent evaluation of theSibworkSprogramme was used. Measures were administered pre-intervention, immediately post-intervention and three months post-intervention. Treatment effects were measured using change scores for siblings on the Strengths and Difficulties Questionnaire – Parent Version (SDQ). Seven predictors were analysed: symptom severity of the child with special needs, participant age and gender, sibling birth order, family socio-economic status, participant baseline SDQ score and participant use of additional support services. Results:The overall model significantly predicted change in SDQ scores at post-intervention and follow-up (adjustedR2 = 0.41 and 0.40). At both evaluation points, SDQ change scores were significantly predicted by baseline SDQ score. Furthermore, symptom severity of the child with special needs was a significant predictor at three months post-intervention. Conclusions:Poorer emotional and behavioural functioning among participants and symptom severity of the child with special needs were associated with greater intervention effects. These results indicate thatSibworkSis likely to be beneficial for siblings who have difficulties adjusting, and siblings of children with more severe special needs.Implications for RehabilitationSiblings of children with disability are at increased risk of emotional and behavioural difficulties.Sibworks is a manualised group-based intervention for the siblings of children with a disability.Poorer emotional and behavioural functioning among participants and symptom severity of the child with special needs were associated with greater intervention effects.SibworkS is likely to be beneficial for siblings who have difficulties adjusting and siblings of children with more severe disabilities. [ABSTRACT FROM AUTHOR]

This study investigated the psychometric properties of the Child and Family Quality of Life scale, a measure of psychosocial quality of life in those with autism and related developmental disorders. Parents of 212 children suspected of autism spectrum disorder completed the Child and Family Quality of Life prior to a diagnostic evaluation. Results indicated that the Child and Family Quality of Life measured six unique quality-of-life constructs (child, family/caregiver, financial, external support, partner relationship, and coping), had good reliability across score ranges and exhibited expected patterns of convergent validity. Caregivers of autism spectrum disorder–affected children reported reduced family quality of life prior to the time of diagnosis relative to caregivers of children with other developmental disabilities. The Child and Family Quality of Life is a brief, reliable measure for assessing psychosocial quality of life in families affected by developmental disability. This study is the first to demonstrate impairments in family quality of life early in the developmental course of autism spectrum disorder, prior to formal diagnosis. In addition to traditional child-focused intervention strategies, families with autism spectrum disorder–affected children require early, broad intervention strategies that positively impact the whole family. [ABSTRACT FROM AUTHOR]

Background: Stigma is prominent in the lives of autistic individuals and their families and contributes significantly to the challenges faced by families raising an autistic child. Parents and carers can feel blamed for their child's behaviour, feel socially excluded and isolated and suffer from low self-esteem and poor psychological well-being. This increases the risk of experiencing self-stigma which further exacerbates these and other negative consequences. Therefore, there is a need for interventions that help parents/family carers cope with autism-related stigma as well as prevent the internalisation of stigma. Objectives: The primary objective of this study is to assess the feasibility and acceptability of a stigma support intervention for parents and carers of autistic children titled 'Stigma of Living as an Autism Carer (SOLACE)'. The secondary objective is to explore the preliminary impact of the intervention on the mental health of the parents and carers. Methods: A pilot randomised controlled trial feasibility study will be implemented. A group receiving the SOLACE stigma support intervention (n = 12) will be compared against a control group not receiving any additional intervention (n = 12). Family carers of autistic children up to the age of 10, who have been recently diagnosed or are currently undergoing diagnosis, will be recruited for the study. Participants will be randomly allocated to the intervention or control group and will take part in eight weekly group-based sessions designed to improve the well-being of the parents primarily through increasing their resilience to stigma. Feasibility will be determined by recruitment and retention rates and a qualitative focus group evaluating the acceptability of the intervention and outcome measures. The primary outcome of interest is psychological well-being, and depending on the normality of distribution, independent samples T tests will be used to compare the outcome scores between the two groups and dependent samples T tests for differences within the group. Other outcomes of interest are stigma, self-stigma, self-esteem, self-blame, social isolation, self-compassion and perceived responsibility and control. Discussion: Results from the feasibility randomised controlled trial will be used to refine the study protocol and inform the design of an intervention for future use in a larger, powered trial. SOLACE could potentially improve the psychological well-being of parents/family carers of autistic children through increased resistance to stigma. Trial registration: ISRCTN Registry number ISRCTN61093625 (October 13, 2017). [ABSTRACT FROM AUTHOR]