Families Of Autistic Children Research Articles

The relationship between perceived social support and rumination among parents of children with autism: moderating effect of the degree of intervention received by children.

As the number of children diagnosed with autism rises year by year, the issue of nurturing this particular group becomes increasingly salient. Parents of autistic children, as the nearest and most reliable caregivers for their children, shoulder immense psychological strain and accountability. They are compelled to confront an array of daily life challenges presented by their children, as well as endure multiple pressures such as societal scrutiny and financial burdens. Consequently, the mental health status of the parents is of utmost significance. In this study, questionnaire survey combined with literature analysis were applied. The rumination thinking scale and the social support scale were used to investigate the relationship between social support perceived by parents of autistic children and rumination. Meanwhile, the moderating effects of intervention on children with autism were also explored. It hopes that our research would provide a basis for alleviating psychological stress and improving the mental health levels of the parents. A total of 303 parents of children with autism were collected (including 160 females and 143 males). Corresponding data analyses were conducted using SPSS 26.0. Parents of autistic children generally exhibited high levels of rumination, with significant gender differences. At the same time, the perceived social support by the parents significantly influenced their level of rumination. It showed that the higher the social support received by parents, the lower the level of rumination. More importantly, the extent of intervention received by the children had a regulating effect on rumination of their parents. The personalized psychological support programs should be developed based on the actual situation of parents, to better manage the challenges presented by raising a child with autism. Our findings would provide important theoretical underpinnings and practical guidance for psychological intervention efforts aimed at families of autistic children. Moreover, these findings offer novel insights for future research, with the potential to advance the field of mental health studies concerning parents of children with autism.

Gastrointestinal symptoms in autistic children during Covid-19 lockdown: A qualitative study of family experience

BackgroundAutistic individuals face barriers to healthcare access and premature mortality. There is an increased prevalence of gastrointestinal (GI) disorders in autistic children compared to not-autistic children. There is a complex interplay between these GI symptoms and various aspects of behaviour, sleep, and mental health in autistic children. Lockdowns during the Covid-19 pandemic changed the delivery of healthcare for all patient groups, and it is particularly important to understand the effects of this on vulnerable groups. In this qualitative study we document the family experiences associated with managing persistent GI symptoms in autistic children and access to related healthcare for these children during Covid-19 lockdowns and restrictions. MethodWe conducted semi-structured interviews with 12 parents of autistic children and subjected data from these interviews to qualitative analysis. ResultsTwo themes emerged (i) Covid-19 lockdowns and restrictions changed the children’s reported GI symptoms in a non-uniform manner; and (ii) parents were divided on the appropriateness of telemedicine services for their child. Some parents reported an increase in their child’s anxiety level that was linked to worsening of GI symptoms. Those parents who reported a reduction in their child’s social anxiety during lockdown related this to improved GI symptoms. Parents reported advantages and disadvantages of both in-person and telemedicine consultations, and they were split on their preferences for these appointment types. ConclusionsTelemedicine is preferred by some but not all families of autistic children. Clinicians should consider the interplay between anxiety and GI symptoms in autistic children when assessing and treating GI symptoms.

Does Parental Mental Health Moderate the Association between Parenting Stress and Child Externalizing Behaviors Among Autistic Children?

Parents of autistic children experience significant parenting stress, which is prospectively associated with increases in child externalizing behaviors. However, family factors that place specific families at risk for experiencing the negative impacts of parenting stress on child externalizing behaviors have not been identified. The present study examined whether parental mental health moderates the association between parenting stress and child externalizing behaviors. Parents of 501 autistic children (Mage=5.16yrs) completed the Parenting Stress Index and Eyberg Child Behavior Inventory. Parents reported whether they had ever been diagnosed with a mental health disorder. Parenting stress, parental internalizing diagnosis, and parental externalizing diagnosis all independently predicted child externalizing behavior. However, parenting stress did not interact with any category of parental mental health diagnoses to predict child externalizing. Results implicate high levels of parenting stress as a risk factor for increased child behavior problems among autistic children across parental mental health statuses. Interventions aimed at reducing parenting stress may improve parent outcomes and prevent the development of child externalizing behaviors among families of autistic children.

Parental Expressed Emotion and Behavioural Outcomes in Autistic Children and Adolescents: A Systematic Review.

Growing interest in the links between parent-child relationships and child behavioural presentations in families of autistic children has led to an increased use of the Five Minute Speech Sample (FMSS) measure of parental expressed emotion (EE) in autism research. This review focuses on studies exploring the relationships between parental EE and behavioural outcomes in autistic children. Electronic searches of six databases and grey literature wielded eight studies that met eligibility criteria. Study designs were a mixture of cross-sectional and longitudinal and quality of studies was variable. Parental criticism was largely positively related to, and showed some predictive value for, child behaviour problems. Warmth was mostly negatively related to, and showed some predictive value for, child behaviour problems. Preliminary evidence from one study showed paternal warmth to be significantly related to child behaviours, whilst child behaviours were also significantly related to paternal warmth, suggesting a bidirectional relationship. Analysis of additional EE components produced variable results, however parental stress and depressive symptoms were consistently related to child behaviour, and preliminary evidence suggests a possible role of maternal education level and family cohesion. Outcomes were variable across FMSS coding systems and greater consistency in their application is needed in future research. The current findings suggest that parental EE has an important relationship with child behaviour and future intervention efforts may benefit from aiming to reduced EE in order to improve child outcomes.

Sibling Relationships in Families of Autistic and Typical Children: Similarities and Differences in the Perspectives of Siblings and Mothers.

This study investigates mothers' and siblings' perspectives regarding similarities and differences in siblingships with and without autism. Twenty-nine typical children (Mage = 8.78years, SD = 2.05) whose younger siblings have a diagnosis of autism and their mothers constituted the 'autism group.' Forty-six typical children (Mage = 9.12years, SD = 2.06) with younger typical siblings and their mothers constituted the 'typical group'. Children and mothers completed the Sibling Relationship Questionnaires and were interviewed. Children's reports illustrated similarities in sibling relationships across groups, with no between-group differences in overall warmth, conflict, rivalry, or relative power in the sibling relationship. Mothers of autistic children reported their children to have less warmth and closeness (F(1,72) = 5.63, p = .02, η2 = .073) and less conflict (F(1,72) = 6.66, p = .012, η2 = .085) with their siblings than mothers of typical children. More disagreement was found between mothers and children in the autism group than in the typical group. Mothers and children reported less intimacy and less quarreling between the siblings in the autism group than in the typical group. The qualitative analysis suggests that siblings focused on the present experience, while mothers also referred to processes in the sibling relationship. Interviewees in the autism group referred to various specificities in the siblingships without explicitly using the term "autism". The findings highlight a typical-like experience for siblings of autistic children. At the same time, mothers' perspectives emphasize differences and challenges in siblingships, reporting a pattern of decreased involvement. It is important to consider both perspectives in research and clinical work with families of autistic children.

Functioning of the Family System With an Autistic Child: A Comparative Study Between Poland and California, USA

Objectives of the research: The aims of this research are to conduct a comparison study between the level of communication and flexibility in families with autistic children in two different geographical locations and cultural contexts – California (USA) and Poland (Europe) – to address whether the level of these two dimensions of family functioning are related to the ego-resiliency of the parents, and additionally to discuss the practical implications that can be drawn from the results.
 Research methods: Communication and flexibility profiles in family functioning were collected in Poland and California from September 2016 to February 2018. Data on the similarities and differences between parents of children with autism spectrum disorder in Poland (n=111) and California (n=105) was collected using Olson’s FACES-IV. The Ego-Resiliency Scale was also administered in methodologically standardized conditions and was empirically analyzed along with controlled demographic variables.
 A short description of the context of the issue: Family functioning and ego-resiliency in families with children with autism are analyzed in this research. The richness of interactions and connections within the family system suggests that when explaining the relationships within the family system, the interpretation that is based on linear causality is abandoned and replaced by circular causality, which is the model of analysis utilized in this research project. The main goals of this research were to compare and contrast family functioning in two geographical locations and cultural contexts and to show statistically significant differences between these two groups, in order to better understand cultural variations and differences that may affect family functioning and ego-resiliency and to provide the different groups with adequate, necessary support services.
 Research findings: The results revealed statistically significant differences in various dimensions of Family Communication and Flexibility between families of autistic children in California and Poland. With respect to both variables, higher scores were found in the California group. The flexibility results in both groups were defined as flexible. However, in regards to family communication, the result of the California group corresponded to higher standardized scores, whereas those of the group from Poland revealed moderate standardized scores.
 Conclusions and recommendations: Statistically significant positive correlations were found in the variables of Flexibility and Family Communication between Poland and California. The results of this research are critical, not only from the perspective of scientific development (as similar studies have not been conducted), but also for therapeutic and preventive reasons. They suggest concentrating on preventive activities and aspects that are important for the well-being of the parent as a person, as well as the entire family system, especially the dimensions of communication in families with children with autism spectrum disorder and the ego-resiliency of the parents. However, further research is needed to specifically identify the differences between the groups based on various demographic variables. Additionally, it is important to develop a practical model to support families with autistic children and to address family satisfaction in intervention strategies, as well as to consider the importance of support groups that may improve satisfaction and ego-resiliency within the family system.

Feasibility Study of Music Therapy Based Autism in Children

With the significant increase in the number of children with autism in the last decade, it has attracted extensive attention from the society. Autistic children always have to bear a very high pressure of social opinion, while they themselves experience physical pain at the same time. At the same time, the families of autistic children need to bear very great financial pressure, and they need to pay high treatment costs and medication costs. The cost of time also increases as they need to spend more attention on the care of the autistic child. This is why autism treatment is especially important and relevant in today's society. The most common method used by healthcare providers today is the traditional applied behavior analysis (ABA) therapy. However, traditional applied behavior analysis (ABA) therapy have always ignored the uniqueness of each autistic child and how to integrate into society and increase communication skills. These shortcomings can be solved by the introduction of music therapy, and music therapy can help autistic children better control their emotions and soar in social skills. What is also not to be overlooked is that music therapy reduces the cost of therapy and has greater tolerance and possibilities for the therapeutic environment and equipment. This undoubtedly overcomes some of the drawbacks associated with traditional treatments and improves the efficiency of healthcare while reducing healthcare costs. This paper attempts to analyze the role of music therapy in the treatment of children with autism and to provide feasible recommendations. It also calls on the society to pay more attention to the group of autistic children and light up a light for them.

Patterns and impact of technology use in autistic children

BackgroundAutistic children and youth spend a significant amount of their time interacting with technology, however, the characterization of use remains sparse. The objectives of this study were to 1) characterise the patterns and purpose of technology use among autistic children compared to non-autistic children, 2) explore the impact of how technology use affects child and family well-being, and 3) examine parents’ attitudes towards childrens’ technology use. MethodsA 44-question anonymous parent-report survey developed in consultation with families of autistic children and clinicians was available online for 22 months, from April 2018 through February 2020. Parents and caregivers of children 19-years-old and younger were eligible to complete the survey. Results611 survey responses were collected (autism group = 407; community group = 204). The autism group exhibited greater technology use across all time points of interest, with tablets being the most frequently used device type. The autism group was also more likely to use technology for therapeutic and recreational activities. The autism group experienced more positive impacts on quality of life and benefited more in areas of social, motor, language, and emotion regulation skills from technology use than the community group. Parents of older children, males, and those in the autism group were more likely to report displaced socialising with technology use. Positive attitudes were more likely to be reported by parents of autistic children and younger children, whereas negative feelings were more likely to be reported by parents of older and male children. LimitationsThe study findings must be interpreted within the context of several limitations, including the size and representativeness of the sample, potential for bias from parent-report, and limitations in the survey design (closed-ended questions). ConclusionsAutistic children exhibited more technology use than non-autistic children. Parental perceptions of impact were highly mixed, and included potential benefits for recreation and supports. Implications for technology developers and clinical practitioners are discussed.

"We are exhausted, worn out, and broken": Understanding the impact of service satisfaction on caregiver well-being.

Few studies exist that have examined the impact of service-related factors and system-level disruptions (i.e., the pandemic) on families of autistic children in Canada using large sample sizes. To address this gap, the goal of this research was to examine the impact of satisfaction with autism services on caregiver stress, controlling for important demographic variables, such as family income, marital status, and child level of support needs. The impact of navigating and accessing services on parent well-being was also explored. A total of 1810 primary caregivers of autistic children or youth living in Ontario, Canada completed a survey with both closed- and open-ended questions in the summer of 2021. A hierarchical multiple regression was conducted to examine the impact of satisfaction with autism services on caregiver stress. Open-ended responses on the survey from a subset of the sample (n = 637) were coded using thematic analysis to understand the impact of navigating and accessing services on parent well-being. Satisfaction with services significantly predicted caregiver stress after controlling for marital support, family income, and child level of support needs. Qualitative analysis revealed impacts of navigating and accessing services in three areas: (1) Physical, (2) Emotional/Psychological, and (3) Financial Well-being. Understanding parent perceptions of satisfaction with services can shed light on strategies for improving services that support parent well-being.

‘We are listening’ Mother-led research exploring inclusive communication between autistic young people and their families

This research engages Autoethnographic Participatory Action Research (APAR) to explore family communication within and between families of autistic young people in emerging adolescence. Autistic young people often have diverse ways of communicating and differences between family members’ communication can result in barriers to family interaction. Much of the existing research in communication in autistic young people within family settings centres around younger children and little is known, therefore, about communication in families of autistic children in middle childhood as they meet the challenges of adolescence. This parent-led study engaged mothers from five families as co-researchers to explore communication within their own families. The action-reflection cycle of the APAR methodology proved to be an effective vehicle for gaining deeper understandings of the young person’s unique situated communication. Findings presented in this article identify the importance of time and space as key enablers to inclusive communication within families.

Cultural adaptation of ACT to support caregivers of autistic Latino children: A pilot study

Providers working with families of autistic children have a shared responsibility to ensure access to culturally responsive and linguistically appropriate services for Latino caregivers. Acceptance and Commitment Therapy (ACT) is a promising intervention for Autism parents. However, research on ACT for Latino caregivers is absent. This small pilot study indicated that a brief, group-based, culturally adapted ACT protocol may enhance the wellbeing of Latino mothers. The 2-day intervention was associated with significant reductions in anxiety, depression and psychological inflexibility for all parents, with medium to large effect sizes. Methodological factors significantly limit conclusions, however, the study offers the foundation for a program of research centered on the promotion of thriving in Latino families with autistic children, and how to best integrate guidelines for culturally adapted practice with CBS approaches. The study also highlights the importance of centering social justice as a key component of what it means to be effective contextual behavioral scientists and the need for systemic action to address current barriers to care for Latino families.

Piloting a Home Visual Support Intervention with Families of Autistic Children and Children with Related Needs Aged 0-12.

29 families with children (n = 20 males; mean age 6.59 years [Range 3.64-12.21 years SD 2.57]) receiving support for autism or related needs participated in the study. Parents engaged in an individualised assessment and intervention process through home visits, completing pre- and post-measures. Qualitative methods were used to explore the parents' experiences of the intervention. The intervention led to a statistically significant improvement in parent-reported quality of life (t28 = 3.09, p = 0.005) and parent-reported perception of autism-specific difficulties (t28 = 2.99, p = 0.006). Parents also reported improved access to resources and relevant information and increased confidence in using visual supports at home. The home visit model was strongly supported by the parents. The results provide initial evidence of the acceptability, practicality, and utility of the home-based visual supports intervention. These findings suggest that outreach into the family home may be a beneficial mechanism for delivering interventions related to visual supports. This study highlights the potential of home-based interventions to improve access to resources and information for families and the importance of visual supports in the home setting.

The psychological impact of the secondary school transition on families of autistic children

The transition from primary to secondary school is a stressful period for autistic individuals. However, less is known about parental experiences of the school transition, and its impact on the family. This study explored mothers’ perspectives on the psychological impact of the transition to secondary school for their autistic children and their families. Using Interpretative Phenomenological Analysis, semi-structured interviews were analysed to explore the experiences of eight mothers of autistic children at the end of their child’s first year in secondary school. The analysis revealed two superordinate themes: lack of available support and detrimental psychological impact on the family. Mothers reported the negative impact the transition had on themselves, their child, and the wider family. The importance of pre- and ongoing transition support was highlighted to reduce the concerns of children and their parents throughout the transition process. The findings highlighted the need for autism-specific individualized guidance, as well as considering the potential for transition issues to impact on siblings.

Profiles of the parenting experience in families of autistic children.

Research shows that parents of autistic children, on average, are stressed; however, there is likely an array of factors that characterize the parenting experience in the context of autism other than stress. Understanding the diversity in the parenting experiences of both mothers and fathers of autistic children is important in the development of family-based intervention. A total of 188 co-habiting couples with an autistic child described their parenting experiences using a series of questionnaires examining their feelings of stress, parenting competence, and parenting attitudes and behaviors. We then sorted responses into profiles-three for mothers and four for fathers. We found that children of parents who reported the least amount of stress, highest feeling of competence, and use of responsive and directive parenting strategies (the Adaptive profile) had children with the least severe behavioral problems and autism symptoms. It was not necessary for both parents to be in the Adaptive category for child emotional and behavioral problems to less severe. We found that children did just as well when one parent was Adaptive compared with when both parents fell into this category.

Virtual Parent Coaching of Music Interventions for Young Autistic Children in Mexico

Abstract The coronavirus disease (COVID-19) pandemic disrupted education, peer interactions, and social access for a large percentage of learners and created increased stress and workloads for parents, particularly in families of autistic children, who lost access to specialized services. Providing parents with resources to support their children at home became a necessity. This exploratory study investigated the feasibility of a parent coaching model of music interventions through virtual sessions in a low-resource country. Eight families participated in six 1-hr weekly sessions where the music therapist shared music interventions for young autistic children through videoconferencing. Results show that parent coaching in a virtual setting is feasible, useful, and acceptable for parents. All parents improved in their ability to modify the environment to address child’s needs, adequately respond to their child’s communication attempts, and provide opportunities for engagement and natural reinforcement. Parents found the coaching important, useful, and supportive. Initial recommendations for practice include providing guidelines for safe sessions; adapting to family needs, strengths, and culture; relaying information quickly and concisely; and ensuring that parents can access local services to continue their parenting journey.

Psychological and pedagogical work with families of autistic children

Psychological and pedagogical work with families of autistic children

Acceptability of a behavioural sleep intervention for autistic children: A qualitative evaluation of Sleeping Sound

ObjectiveThe aim of the current study was to evaluate parental perceptions of the acceptability of a brief behavioural sleep intervention for autistic children (aged 5–13 years) using the Theoretical Framework of Acceptability (TFA). MethodsQualitative data were collected during a large randomised controlled trial evaluating the efficacy of the Sleeping Sound intervention: 123 families were randomised to the intervention group, of which 115 (93%) completed at least one intervention session and 82 (67%) provided qualitative evaluation data in the 3-month follow-up survey. Consultation records from intervention sessions and parent surveys were qualitatively analysed post hoc using a hybrid approach to thematic analysis. ResultsFindings were categorised under the seven themes of the TFA (affective attitude, burden, ethicality, intervention coherence, opportunity costs, perceived effectiveness, self-efficacy) in addition to three themes that were defined following inductive and deductive coding (barriers to implementation, facilitators to implementation, suggestions for improvement). Participants spoke positively about their experience participating in the intervention and perceived the intervention to be appropriate and effective. Most parents (95.5%) reported that they would recommend the Sleeping Sound intervention to other families of autistic children. Barriers to implementation included child and parent anxiety, child health problems, parental preferences, family circumstances, and other (e.g., school holidays). Facilitators to implementation included family support and consistency with strategies. ConclusionsThe Sleeping Sound intervention was considered acceptable to parents of autistic children as evidenced by largely positive feedback regarding their experience. The results highlighted areas for improvement which can be used to inform future iterations of the intervention.

Barriers and facilitators for obtaining support services among underserved families with an autistic child: A systematic qualitative review.

Families from underrepresented ethnic or racial groups and those with limited financial resources could experience more difficulty in accessing support services for their autistic child due to certain types of barriers. We searched academic journals, websites, and other sources for studies which looked at what barriers might be present for such families and what might help families access support services for their autistic child. The search found 18 studies. Results from each study were examined and coded into themes. Parents reported that accessibility, diversity of support services, and stigma influenced their experiences with support services. We discuss what these findings might mean for future research and for service delivery.

Obtaining a First Diagnosis of Autism Spectrum Disorder: Descriptions of the Diagnostic Process and Correlates of Parent Satisfaction from a National Sample.

Obtaining an autism spectrum disorder (ASD) diagnosis is often challenging for parents. The purpose of this study was to better understand this process and examine how elements of the process may influence parent satisfaction. A total of 406 parents of autistic children participated. Participants were administered a survey covering the ASD diagnostic process. Parents had developmental concerns early but experienced long wait times and usually attended many appointments. Mean diagnostic age was 3.26 years and overall delay was 1.20 years. Stress and being told there was "no problem" were significantly associated with parental satisfaction with the process. Findings provide insight into challenges experienced by families of autistic children and can help pinpoint areas where the diagnostic process may be improved.

Longitudinal impact of parents' discrimination experiences on children's internalizing and externalizing symptoms: A 2-year study of families of autistic children.

Although many parents of autistic children are routinely discriminated against, the potential impact of this discrimination on their parenting processes and child-rearing outcomes has seldom been investigated. The present study addressed this gap in the literature by examining the longitudinal associations of parents' discrimination experiences with children's internalizing and externalizing symptoms among families of autistic children and testing whether these associations would be mediated by parental depression, harsh parenting, and coparenting conflict. On three occasions across 2 years (i.e. T1, T2, and T3), 441 parents of autistic children from Hong Kong, China, provided questionnaire data. Path analyses showed that parents' discrimination experiences at T1 had significant direct effects on parental depression, harsh parenting, and coparenting conflict at T2, which, in turn, had significant direct effects on children's internalizing and externalizing symptoms at T3. Bootstrap analyses further demonstrated that parents' discrimination experiences at T1 had significant indirect effects on children's internalizing and externalizing symptoms at T3 via parental depression, harsh parenting, and coparenting conflict at T2. Our findings have important theoretical contributions and significant practical implications. Theoretically, our findings elucidate how parents' discrimination experiences may longitudinally heighten children's internalizing and externalizing symptoms by adversely affecting parental well-being and parent-child and inter-parental relationships. Practically, our findings highlight the importance of designing and implementing community-based stigma reduction programs and family-based stigma coping interventions to reduce parents' discrimination experiences and associated adverse outcomes on well-being, parenting, marriage, and child development.