Factors associated with stress in families of children with autism spectrum disorder

ABSTRACT

Purpose: The purpose of this study was to identify key factors associated with severe stress in families raising a child with autism spectrum disorder (ASD). Methods: Questionnaires were mailed to families with one or more children with a diagnosis of ASD. Data from 543 surveys were analyzed using univariate and multivariate logistic regression. Results: Forty-four percent (n = 241) of the caregivers reported severe family stress related to raising a child with ASD. Severe family stress was associated with (1) reduced ability to socialize; (2) not having accessed individual therapy; (3) negative co-parent relationships; and (4) high out of pockets costs due to the child’s ASD. The specific ASD diagnosis, comorbid conditions, socio-demographic variables, and social support were not associated with severe family stress. Conclusion: The findings of the current study highlight the importance of a systemic approach to family stress, whereby individual, family, and ecological factors are investigated.     

Parental Risk Literacy is Related to Quality of Life in Spanish Families of Children with Autism Spectrum Disorder

Families of children with autism spectrum disorder (ASD) often experience much more negative perceptions of their family quality of life (FQoL). To investigate key factors that may shape these experiences, we conducted a case–control study of sixty-one Spanish families (29 with a child with ASD) using a broad psychosocial assessment (e.g., ASD severity, social support, demographics), including the first direct test of the relationship between FQoL and parental risk literacy (i.e., the ability to evaluate and understand risk, as measured by numeracy). Results revealed that numeracy was associated with differences in perceived FQoL among families of children with ASD (R²?=?.10), a finding that held across several models statistically controlling for the influence of other variables. Findings suggest that parental risk literacy skills may generally be associated with differences in decision making vulnerabilities (e.g., risk evaluation and interpretation) that influence family outcomes including FQoL.

     

Self-esteem,social support,and life satisfaction in Chinese parents of children with autism spectrum disorder

PurposeThe current study examined self-esteem, social support, and life satisfaction in Chinese parents of children with autism spectrum disorder (ASD), and observed the mediation effects of social support on the relationship between self-esteem and life satisfaction.MethodsWe compared 118 Chinese parents of children with ASD to 122 demographic-matched parents of typically developing children on measures of self-esteem, social support, and life satisfaction using the Rosenberg Self-Esteem Scale (SES), Multidimensional Scale of Perceived Social Support (MSPSS), and Satisfaction with Life Scale (SWLS), respectively.ResultsParents of children with ASD scored significantly lower on self-esteem, social support, and life satisfaction than the controls (ps < 0.01), and social support partly mediated the relationship between self-esteem and life satisfaction in both groups. Hierarchical regressions indicated that after controlling for demographic variables, social support and self-esteem were significant predictors of life satisfaction in both groups but explained more variance in life satisfaction for the parents of children with ASD.ConclusionsSocial support and self-esteem play a more important role in life satisfaction for parents of children with ASD than those of typically developing children. Life satisfaction is positively related to higher household income, higher self-esteem, and stronger social support for parents. Self-esteem is likely to be associated with greater life satisfaction by means of greater social support. Future research and interventions should focus on fostering a more positive climate of social support for ASD families in China.     

Telepractice Delivery of an Autism Communication Intervention Program to Parent Groups

BackgroundSocial communication is a core challenge for children with autism and research confirms that early intervention positively impacts developmental outcomes. Families often experience barriers when accessing early intervention such as service availability, cost, and geographical location. Telepractice intervention has been used effectively with individual families to help overcome service barriers and to assist service access. This research investigated an expanded telepractice approach involving delivery of a manualized communication intervention to groups of parents. The research evaluated parent and child communication outcomes following participation in a telepractice-delivered, Hanen More Than Words (HMTW) group program.MethodA single case experimental design involving a multiple-baseline-across-groups was implemented with 11 mother–child dyads. Quantitative analyses investigated both parent and child interactive communication behaviours during baseline, intervention, and post-intervention research phases.ResultsResults demonstrated improved parental responsiveness and increased child social communication behaviour following participation in the telepractice-delivered HMTW. Changes in parent and child communication behaviour were maintained during the post-intervention phase.ConclusionsThe results support the application of telepractice for delivering a group-based early intervention training program. Expanding telepractice service delivery from individual to group-based intervention has the potential to increase service choice for families and to mitigate service access barriers.     

A community-based sleep educational intervention for children with autism spectrum disorder

BackgroundSleep problems are common in children with autism spectrum disorder (ASD). Sleep education, effective in improving sleep in ASD, may be difficult to access. We determined if community-based pediatric therapists could successfully deliver sleep educational interventions to caregivers of children with ASD.MethodsA seven-week feasibility study was conducted consisting of 10 children and caregivers. This feasibility study informed the development of a 16-week preliminary effectiveness study, which consisted of 33 children and caregivers. Children, ages 2–12 years, with a clinical diagnosis of autism and caregiver-reported sleep onset delay of 30 min were included. Community therapists underwent comprehensive training in sleep education and then met with caregiver participants to provide sleep education to each family. Semi-structured qualitative interviews were conducted with all families who completed study procedures.In the feasibility and preliminary effectiveness studies, child participants wore an actigraphy watch (at baseline and after sleep education) and caregivers completed the Child Sleep Habits Questionnaire and Family Inventory of Sleep Habits at baseline and after sleep education; the Child Behavior Checklist was also completed by caregivers in the preliminary effectiveness study.ResultsEducator fidelity to the manualized curriculum was maintained. Caregivers showed appropriate understanding, comfort, and implementation of the curriculum. Qualitative and quantitative measures, including caregiver surveys and actigraphy, showed improvements in child sleep and behavior.ConclusionsCommunity-based therapists can successfully deliver sleep education to families of children with ASD, which has favorable implications for improving access to care in this population.     

Parents’ perspectives on care of children with autistic spectrum disorder in South Asia – Views from Pakistan and India

Abstract

Autism spectrum disorder (ASD) affects about 1.4% of the population in South Asia but very few have access to any form of health care service. The objective of this study was to explore the beliefs and practices related to the care of children with ASD to inform strategies for intervention. In Pakistan, primary data were collected through in-depth interviews of parents (N = 15), while in India a narrative review of existing studies was conducted. The results show that the burden of care is almost entirely on the mother, leading to high levels of stress. Poor awareness of the condition in both family members and front-line health-providers leads to delay in recognition and appropriate management. There is considerable stigma and discrimination affecting children with autism and their families. Specialist services are rare, concentrated in urban areas, and inaccessible to the majority. Strategies for intervention should include building community and family support networks to provide respite to the main carer. In the absence of specialists, community members such as community health workers, traditional practitioners and even motivated family members could be trained in recognizing and providing evidence-based interventions. Such task-shifting strategies should be accompanied by campaigns to raise awareness so greater inclusivity can be achieved.     

Variability in adaptive behaviour in young children with autism spectrum disorder

ABSTRACT

Background Understanding adaptive behaviour variability in children with autism spectrum disorder (ASD) may have important implications for early intervention. The purpose of this study was to explore whether autism symptom severity and caregiver depression affected adaptive behaviour in young children with ASD.

Method Data were collected from 60 primary caregivers of children aged 2–6 years with ASD. A factorial multivariate analysis of covariance was conducted to investigate if different levels of autism symptom severity and caregiver depression affected communication, socialisation, and daily living skills, after controlling for child age.

Results Findings suggest that only autism symptom severity accounted for significant variance in adaptive behaviour, with socialisation being most impacted. Although more than half of the caregivers reported heightened depressive symptoms, caregiver depression was not related to adaptive behaviour.

Conclusions Findings highlight the level of functional impairment that young children with ASD experience in relation to autism symptom severity.     

Family level processes associated with outcomes for individuals with autism spectrum disorder: A scoping review

BackgroundFamilies of individuals with autism spectrum disorder (ASD) face distinct challenges, and there is a need for research that attends specifically to the family. Despite the recognition of reciprocal influences in the family, research on families of individuals with ASD has tended to focus on child effects within a dyadic subsystem and not necessarily family effects. Thus, this review focuses on whether and how family processes are associated with the behavioral, social, and/or emotional development of individuals with ASD.MethodA scoping review was conducted to synthesize existing empirical literature regarding links from family functioning to individual outcomes. Family systems approaches are used along with ecological models to provide an inclusive, guiding framework for research design and interpretation of findings in family-based ASD research.ResultsResults suggest that family-wide factors such as adaptability, cohesion, social support, dynamics, and functioning may be important for child development. However, the heterogeneity of the body of literature reviewed makes definitive conclusions difficult.ConclusionsRecommendations for future research, including the need for theoretically grounded, developmentally appropriate, models that highlight the unique strengths, challenges, and cultural influences of families of an individual with ASD are discussed.     

TOBY play-pad application to teach children with ASD – A pilot trial

Abstract

Purpose: To investigate use patterns and learning outcomes associated with the use of Therapy Outcomes By You (TOBY. Playpad, an early intervention iPad application.

Methods: Participants were 33 families with a child with an autism spectrum disorder (ASD) aged 16 years or less, and with a diagnosis of autism or pervasive developmental disorder – not otherwise specified, and no secondary diagnoses. Families were provided with TOBY and asked to use it for 4–6 weeks, without further prompting or coaching. Dependent variables included participant use patterns and initial indicators of child progress.

Results: Twenty-three participants engaged extensively with TOBY, being exposed to at least 100 complete learn units and completing between 17% and 100% of the curriculum.

Conclusions: TOBY may make a useful contribution to early intervention programming for children with ASD delivering high rates of appropriate learning opportunities. Further research evaluating the efficacy of TOBY in relation to independent indicators of functioning is warranted.     

Fathers of children with autism spectrum disorder: Their perceptions of paternal role a predictor of caregiving satisfaction,self-efficacy and burden

BackgroundThe positive effect of a father’s involvement in children’s upbringing is now recognised. However, research on fathers raising children with autism spectrum disorder (ASD) are still few. This study examines the relationship between the perception, fathers of children with ASD have of the importance of their role in the development of their children and the feelings (self-efficacy, caregiving burden, satisfaction) they express about their parenting experience.MethodSixty-three Swiss Italian fathers of children with ASD completed The Role of the Father Questionnaire (ROFQ), three sub-scales of the Caregiver Survey, a subtest of the Child Adjustment and Parent Efficacy Scale and a home-made questionnaire measuring Perceived Social Support.ResultsThe results from hierarchical multiple regression analyses show that the importance that fathers attach to the paternal role predicts positively their caregiving satisfaction and their feeling of self-efficacy. The children’s challenging behaviours predict positively the caregiving burden whereas the assessment of social support predicts it negatively.ConclusionsThe perception of the importance of the paternal role needs to be considered in the support offered to families with a child with ASD. A better understanding of the fathers’ feelings could be of value for the programmes.     

Brief Report: Early Social Communication Behaviors in the Younger Siblings of Children with Autism

The early social and communicative development of very young siblings of children with autism spectrum disorder (ASD) is the focus of the current study. Three groups of children were included: (1) young children diagnosed with ASD, (2) younger siblings in families with a somewhat older child with ASD, and (3) young typically developing children. All children participated in a videotaped, structured interactional procedure called the Early Social Communication Scales (ESCS; [Mundy & Hogan, 1996, A Preliminary Manual for the Abridged Early Social Communication Scales (ESCS) Unpublished manual, University of Miami]). Very young siblings were compared to young children with a diagnosed autism spectrum disorder and to a group of young typically developing children. Results indicated that, on three of four of the ESCS subscales, the social communicative behaviors of the younger siblings differed from those of the typically developing children but not from the behaviors displayed by the ASD group. Genetic vulnerability for ASD among siblings and characteristics of family interaction may explain the level of impairment observed in the very young siblings of children with autism spectrum disorders.     

The quality of life of parents of children with autism spectrum disorder: A systematic review

BackgroundPrevious research has raised concerns about the quality of life (QoL) of parents of children with autism spectrum disorder (ASD). A better understanding of parental QoL can inform clinicians and policymakers and lead to improved outcomes for both parents and children.AimsThis review aimed to systematically examine studies measuring the QoL among parents of children with ASD (<18 years) and to investigate its parental, child-related and contextual associated factors.MethodologyAn electronic database search was conducted using Medline, Psycinfo, Embase, CINAHL, Biosis, ASSIA, Social Services Abstracts, Sociological Abstracts and Open grey.ResultsThis review indicated poorer QoL among parents of children with ASD compared to parents of typically developing children or to population norms. Variables associated with lower parental QoL within this group included child behavioural difficulties, unemployment, being a mother and lack of social support.ConclusionThis review verified previous reports on lower QoL among parents of children with ASD and highlighted potential areas of support. Implications for future research, policy and practice are discussed.     

Translating research into practice in low-resource settings: An Australian case study of early autism service provision in a regional town

ABSTRACT

Background We investigated the context for translating evidence-based early intervention for autism spectrum disorders (ASD) into real world settings through a case study of a regional town characterised as disadvantaged.

Methods Data were from interview surveys of five managers reporting on 15 services, and surveys from 19 practitioners and 15 mothers of young children with ASD.

Results The 15 services were multidisciplinary, offering diagnostic assessments (n?=?2) and interventions delivered in the home and centres. Children were diagnosed at a mean age of 3 years; access to intervention was delayed and mostly limited to one session every two weeks. Some families travelled substantial distances to services, driving on average 50?minutes each way. Practitioners described intervention strategies in broad terms, rather than name interventions.

Conclusions Services available to young children with ASD in this town were far removed from good practice in terms of early diagnosis, and intervention frequency and intensity.     

Group-based Cognitive Behavioural Therapy for Anxiety Disorder in Children with Autism Spectrum Disorder: a feasibility study

Abstract

Purpose: Autism spectrum disorder (ASD) includes core symptoms that affect general and social development. High risk of developing comorbid disorders such as anxiety is prominent. Up to 60% of children with ASD suffer from anxiety disorders which can negatively influence educational, social and general development together with quality of life. This study is the first to investigate the feasibility of the manualised cognitive behavioural therapy (CBT) group programme 'Cool Kids ASD' for anxiety adapted for children with ASD in a general hospital setting.

Methods: Nine children, aged 9–13 years, with ASD and anxiety recruited from a public child psychiatric health clinic were enrolled in the study. Outcome measures were collected from both child and parent pre- and post-treatment and at 3-month follow-up and included scores from a semi-structured anxiety interview, together with questionnaires on anxiety symptoms, life interference, children's automatic thoughts and satisfaction with the programme.

Results: Eight out of nine families found the programme useful and would recommend it to other families in a similar situation. Six families attended all 12 sessions in the programme, two missed one session and one family only managed to attend eight sessions. At follow-up, five children were free of all anxiety diagnoses and a further two out of the nine children no longer met the criteria for their primary anxiety diagnosis.

Conclusions: This study suggests that the transition of the group programme 'Cool Kids ASD' from University Clinics to standard child psychiatric clinical settings is feasible. Further randomised studies are needed to confirm the efficacy of the programme in a larger sample.     

School-based social skills training for young people with autism spectrum disorders

ABSTRACT

Background: The Secret Agent Society (SAS) Program, an intervention to enhance social–emotional skills, was provided by schools for children with autism spectrum disorder (ASD). The program was assessed to determine if it improved social skills at school and home, and whether improvements were maintained.

Methods: Eighty-four students participated. Key outcomes were parent and teacher ratings of emotion regulation, social skills, and direct child social problem-solving measures. The standard school curriculum served as the control condition. Phase 1 was a two-group waitlist-control comparison of SAS versus the standard curriculum. Phase 2 was a follow up of all participants before and after the intervention and at 12-months post-intervention.

Results: Parent and child measures improved after the intervention but not in the waitlist condition. Improvements in parent, child, and teacher measures were apparent at 12 months.

Conclusions: The SAS Program warrants further research as a potential program for schools that serve children with ASD.     

Autism spectrum disorder and fetal alcohol spectrum disorder. Part II: A qualitative comparison of parenting stress

Abstract

Background Researchers investigating the impact of parenting children with disabilities suggest that regardless of the specific diagnosis, parents experience increased levels of stress. However, particular disabilities may be associated with distinct stressors and strains.

Method Parents of children with autism spectrum disorder (ASD) and parents of children with fetal alcohol spectrum disorder (FASD) participated in in-depth qualitative interviews employing a basic interpretative approach.

Results Both groups described some similar stressors, such as multi-tasking, the diagnostic process, and dealing with behavioural issues, but there are distinct differences between families of children with FASD and families of children with ASD. Whereas parents of children with FASD focused on their children's illegal behaviours, parents of children with ASD struggled with their children's tantrums and anxieties.

Conclusions Supports must be tailored to meet the specific needs of parents of children with different types of disabilities.     

Augmenting Sibling Support with Parent-Sibling Training in Families of Children with Autism

ABSTRACT

Background: Typically developing (TD) siblings are an important part of the family system, but may show strained relationships in families of children with ASD.

Objective: We augmented a sibling support group with parent-sibling training in which parents learned (through instructions, modeling, rehearsal, and feedback) how to prompt and reinforce prosocial behaviors in their TD children.

Method: We examined the effects of parent-sibling training on parent and TD sibling behaviors in a multiple baseline across families design.

Results: Parent prompting and reinforcement of TD sibling prosocial behaviors increase. TD sibling prosocial behaviors such as sharing with and talking to their sibling with ASD also increased. Broader measures of the sibling relationship showed some improvements.

Conclusion: Findings suggest ways to support families of children with ASD with future investigations of parent-sibling training examining longer intervention, all family members’ adjustment and relationships, and sibling characteristics that influence response to parent-sibling training.     

The predictors of distress in parents of children with autism spectrum disorder

Abstract

Background It is well recognised that parents of children with autism spectrum disorder (ASD) often experience clinically significant levels of stress and depression. This study examined which ASD characteristic best predicted parental distress.

Method Parents of 109 children aged between 4 and 12 (M age = 7.89, SD = 2.43) completed self-report measures of anxiety, depression, stress, and parenting-specific stress. They also completed rating scales regarding their child's ASD characteristics.

Results This study found that the child's behavioural and emotional impairments predicted the parents’ overall levels of distress (i.e., stress/tension, anxiety, and depression), but not the stress associated with parenting. Instead, the child's social impairment severity was found to predict parenting-specific stress.

Conclusion This study highlights the pervasive influence of ASD symptomatology on the mental wellbeing of the parents and the importance of assisting parents to cope with the behavioural and social impairments of their child.     

The broad autism phenotype predicts child functioning in autism spectrum disorders

Background

Broad autism phenotype (BAP) is a milder expression of the social and communication impairments seen in autism spectrum disorders (ASD). While prior studies characterized the BAP in unaffected family members of probands with ASD, the relationship between parental BAP traits and proband symptomatology remains poorly understood. This study utilizes the Broad Autism Phenotype Questionnaire (BAPQ) in parents and the Social Responsiveness Scale (SRS) in children to examine this connection. We hypothesized that in families affected by ASD, elevated maternal and paternal BAPQ scores would correlate with greater autism symptomatology in diagnosed children. In an extension of prior research, we also explored this relationship in families with typically developing children (TDC).

Methods

Two hundred and forty-five children with ASD, 129 TDC and all parents were recruited as part of a larger study investigating relationships between genes, brain and behavior. The Autism Diagnostic Interview-Revised (ADI-R), Autism Diagnostic Observation Schedule (ADOS) and expert clinical judgment confirmed ASD diagnoses in children. SRS was collected for all children. Parents completed a self-report BAPQ and an informant report BAPQ for their spouse; an average of self-report and informant report for each parent was used in all analyses.

Results

Mothers and fathers of children with ASD had significantly higher rates of BAP traits as compared to parents of TDC. Maternal and paternal BAPQ total scores were not correlated with child IQ in either group. In the ASD group, 10% of mothers and 21% of fathers scored above the established BAP threshold compared to 4% of TDC parents. Crude regression analyses showed that maternal and paternal BAPQ total scores accounted for significant variance in child SRS scores in both ASD (17.1%) and TDC (19.8%) families.

Conclusions

Our results suggest that broad autism symptomatology in parents is moderately associated with their child’s autism symptomatology. This result extended to TDC families, suggesting that the BAPQ and SRS capture subtle, subclinical social variation in both children and adults. These findings could help define multi-generational social impairments in future phenotypic and genetic studies.     

Recognising the “forgotten man”: Fathers’ experiences in caring for a young child with autism spectrum disorder

ABSTRACT

Background Despite decades of research on family adaptation in relation to caring for a child with an autism spectrum disorder (ASD), the wellbeing of fathers remains poorly understood.

Method The present study sought to investigate experiences of fathers of young children with ASD aged between 2½ and 6 years attending an ASD-specific early intervention centre. Eighteen fathers initially completed a mailed questionnaire and 8 of these fathers were then interviewed by telephone. The questionnaire included standardised measures assessing constructs of the double ABCX model of family adaptation. The interview used open-ended questions to understand the experiences of fathers’ involvement in caring, sources of support, and coping strategies.

Results Fathers experienced elevated levels of parental stress and elevated depressive symptoms. Interviews deepened understanding of fathers’ personal experiences of each component of the double ABCX model.

Conclusions Findings from this study provide further insight into the fathering role and demonstrate the utility of the double ABCX model as a framework for exploring their experiences. The need for further research to explore practical implications to better support fathers is discussed.