A video parent-training program for families of children with autism spectrum disorder in Albania

BackgroundBehavioral intervention with parent participation is effective in reducing symptoms of Autism Spectrum Disorder (ASD), but access to intervention is limited. The current study explored whether a video-enriched parent-training program would (a) be comprehensible and acceptable to parents in the Republic of Albania, (b) increase parental knowledge of behavioral strategies, and (c) increase parental self-efficacy.MethodsTwenty-nine parents of children with ASD aged 18–70 months completed the Early Intervention Parenting Self-Efficacy Scale (EIPSES, Guimond et al., 2008) and a quiz to assess their knowledge of behavioral strategies. Parents in the Treatment Group then received access to a parent-training (PT) program on evidence-based teaching and behavior management techniques. The program was based on empirical research, but considered Albanian cultural norms and included topics Albanian parents requested. Parents in the Treatment Group rated the program using the Treatment Evaluation Inventory Short Form (TEI-SF; Kelley et al., 1989). Change in parents’ quiz scores and EIPSES ratings from baseline to post-treatment were compared by group.ResultsParents rated this video training program as comprehensible and valuable. The program modestly increased aspects of self-efficacy as well as parents’ knowledge of effective teaching strategies.ConclusionRemote PT may be useful in low-resource settings to help parents develop techniques for teaching skills and forestalling problem behavior in children with ASD. Additional research, with a larger sample size, that observes the effect of the program on child behavior is warranted.     

Community services outcomes for families and children with autism spectrum disorders

In an era in which evidence based practices are becoming the standard of care, there is little evidence that the current array of services commonly delivered for those with autism is helpful. This study describes community-based service utilization and caregiver-rated outcomes of services on symptoms of 113 children with autism spectrum disorders and their families. Parents/caregivers reported on nine types of services, received in the prior 6 months, which were evaluated against child and family outcomes. Caregivers rated in-home behavior therapy as providing the best outcomes overall for the child and respite care as providing the best outcomes for the family. Younger children were reported to have better outcomes than older children. Polytherapy was the rule, rather than the exception, as children used a mean of 3.5 different services. The frequency of services and the number of different types of services utilized correlated with family but not child outcomes. Examination of the potentiating effect of medication on outcomes of psychosocial interventions was not significant.     

A pilot study of combining social skills training and parenting training for children with autism spectrum disorders and their parents in Japan

The purpose of this study is to investigate the effects of a program containing a combination of social skills training (SST) and parenting training (PT) for the enrichment of social interaction skills and reduction of parenting stress for children with high-functioning autism spectrum disorder (HFASD) and their parents in Japan. Twenty-two patients with HFASD from second to fourth grade and their parents were assigned to a training group (TG) or treatment as usual (TAU) and compared. The children with HFASD and their parents who were assigned to the TG participated in the manualized program for over a period of five to six months. Subjects provided demographic and medical information and completed teacher and parent-rating scales for social competence (Social Responsiveness Scale-2: SRS-2) and parent-rating of parenting stress (Parental Stress Index: PSI) and mental health (General Health Questionnaire-28: GHQ-28). The participants exhibited some improvements pre-, middle-, and post-treatment, particularly regarding the GHQ, PSI and SRS-2, as reported by parents. However, the social skills improvement reported by teachers was not significant. At the three-month follow-up, parent-rated GHQ and PSI maintained improvement, and SRS-2 achieved the greatest improvement from the baseline rating. Although some findings indicate that a program combination of SST and PT might be useful for enhancing social skills and improving parental stress and mental health, some subscales did not show a sufficient effect. Future research should consider program contents and provide longitudinal follow-up data to test the durability of the treatment.     

Parent coaching intervention for children with suspected autism spectrum disorder: Cost analysis

BackgroundParent coaching interventions for young children suspected of having autism spectrum disorder (ASD) have shown promise. The objectives were to measure the costs of parent coaching and the pre-diagnosis utilization of services and treatments related to autism and to compare costs between families who received parent coaching (PC) and those who received enhanced community treatment (ECT).MethodsThis analysis was conducted prospectively alongside a randomized comparative effectiveness trial of a PC intervention in British Columbia, Canada. Twenty-four participants were randomly assigned to the PC group and received 24 weeks of coaching support and 25 participants were assigned to the ECT group. Families in both groups also received health, education and community services. Parent-reported service utilization was collected for the 6 months prior to initiation of parent coaching and for the period coinciding with receipt of one of the two interventions. Services were costed from the public payer (i.e., provincial government) and societal perspectives; the latter included out-of-pocket family costs, parental time losses due to caregiving, and public payer costs.ResultsFamilies in the PC group used fewer services than did those in the ECT group. The estimated incremental mean cost per family over two time periods for PC compared to ECT was $2515 CAD (95% CI: − 1302, 5071) from the public payer perspective and $6994 CAD (95% CI: − 4395, 19,299) from the societal perspective.ConclusionsThe findings can be used to inform funding and policy decision-making to enhance the treatment options available for young children awaiting an ASD diagnosis.     

Factors influencing treatment decisions by parents for their children with autism spectrum disorder

Studies examining the treatment choices of parents of children with autism spectrum disorder (ASD) have mostly addressed questions about the prevalence of certain treatments. Fewer studies have examined the factors that influence their treatment decisions. In this study, 18 parents of children with ASD rated treatments according to their knowledge about them and how effective they believed them to be. They then distributed tokens representing resources (i.e., money, time, and energy) amongst the treatments they were currently using, or would use were there fewer constraints. Finally, they distributed tokens amongst hypothetical treatments about which they were only given information regarding empirical support and immediacy of outcome. Without the constraints of cost and availability participants distributed resources broadly. However, participants showed a preference for empirical support over immediacy of treatment outcome.     

Death concerns and psychological well-being in mothers of children with autism spectrum disorder

PurposeUtilizing a terror management theory perspective, the present research examined whether having a child with autism spectrum disorder (ASD) is associated with underlying cognitions and explicit worries about death, and their roles in psychological well-being.Method147 mothers of children with ASD (n = 74) and typically developing children (n = 73) completed a fear of death scale, as well as measures of death-thought accessibility, positive and negative affect, depression, and anxiety.ResultsFollowing previous research, mothers of children with ASD reported worse psychological health. Additionally, they evidenced greater death-thought accessibility compared to mothers of typically developing children, but did not differ in explicit worries about mortality. Greater death-thought accessibility, in turn, mediated the influence of ASD diagnosis on negative affect, depression, and anxiety.ConclusionThe current study offers an initial understanding of the association between mortality concerns and psychological health for mothers of children with ASD. Further, it underscores the importance of health care providers’ efforts to attend to, and educate parents about, their thoughts of mortality, even if the parent does not acknowledge such concerns.What this paper addsThe present study examined the impact of both implicit and explicit worries about death in parents of children with Autism Spectrum Disorder (ASD). Specifically, we were able to demonstrate that increased death-thought accessibility among mothers of children with ASD was associated with worse psychological health. While it is possible for parents of children with ASD to report conscious worries about death, there were no observed differences on this measure. As far as we know, this work is the first to empirically examine the prevalence of mortality-related concerns in this population and the subsequent effects of death-thought accessibility on psychological health. This is an important avenue of research as parents of children with ASD may experience greater worries about leaving their children upon death with no one to care for them, or to leave their children in the care of individuals who may not understand their son or daughter's unique needs. Additionally, the current findings highlight the importance of addressing mortality-related concerns, even when they may not be explicitly recognized, among parents of children with ASD. Given the effectiveness of parent education programs for children with ASD, a primary avenue for intervention may be education. Training care providers in ways to better discuss thoughts of death may help to alleviate stress and foster greater psychological well-being.     

Parent training: A review of methods for children with autism spectrum disorders

Autism Spectrum Disorders (ASD) are common in the general childhood population, and are both serious and lifelong. Tremendous strides have been made in the treatment of these ASD in recent years, particularly with respect to psychological interventions. Given the considerable amount of time and cost involved in providing these interventions, parent training and involvement is a particularly appealing intervention option. This paper is a review and status report on evidence based methods that are available for training parents of children with ASD as therapists. Current trends and future directions are discussed.     

A multisite trial of atomoxetine and parent training in children with autism spectrum disorders: Rationale and design challenges

Several randomized controlled trials (RCTs) involving children with autism spectrum disorder (ASD) have examined effectiveness of mono-therapies for problem behavior. However, results have not been as encouraging as in typically developing children. For example, when prescribed stimulants, children with ASD and hyperactivity/inattentiveness, show only moderately reduced symptoms, with frequent side effects. Therefore, alternative treatments or combinations of treatments are needed. The Children's Hyperactivity and Autism Research Treatment Study (CHARTS) is a randomized clinical trial comparing the individual and combined effects of atomoxetine and parent training to treat hyperactivity, inattentiveness, and noncompliance in children with ASD. Design challenges included the overall study design, targeting of different outcomes by different treatments, and data analysis. This article details options for addressing a number of these methodological issues in the context of conducting a large multicenter RCT with an ASD population.     

Effectiveness of a modified rapid toilet training workshop for parents of children with developmental disabilities

Individuals with developmental disabilities often experience challenges in acquiring toileting skills, which highlights a need for effective toilet training strategies that can be readily disseminated to caregivers. The purpose of this multiple baseline study was to evaluate the effectiveness of a modified rapid toilet training workshop provided to the parents of six children with developmental disabilities. In the workshop, parents were taught to implement an instructional protocol that included increased fluid intake, positive reinforcement for correct toileting, scheduled toilet sittings, scheduled chair sittings to teach initiation, neutral redirection for accidents, and procedures to enhance maintenance and generalization. Following the workshop, parents implemented the toilet training protocol at home with their children for 5-8 days, with telephone support from a researcher. Results indicate that the workshop resulted in increased in-toilet urination and defecation and decreased accidents for the five children who completed the study. The results are discussed in relation to previous and future research and implications for practice.     

Evaluation of an online training program to improve family routines,parental well-being,and the behavior of children with autism

BackgroundParents of children with autism spectrum disorder (ASD) are at an increased risk for stress, and their children often display high rates of problem behavior. There is a robust literature base showing that training parents to implement applied behavior analytic (ABA) interventions helps reduce their child’s challenging behavior. However, some parents continue to report high rates of stress that may interfere with implementation. Adding cognitive-affective strategies such as ACT and optimism training to ABA may be beneficial. Telehealth models have the potential to reach parents who may not otherwise be able to access parent training, making evidence-based programs more readily available.MethodTwenty-three parents (with 16 completing posttest assessments) of children with autism (ages four to eight) participated in a three-week online training program. Topics covered included instruction in ABA principles as well as stress reduction strategies and mediation practice based on ACT principles. The intervention included weekly synchronous online meetings with other parents and two parent educators, as well as supplemental assignments completed between sessions.ResultsWe found that after the intervention parents reported: (1) decreases in parental stress, (2) increases in relevant knowledge, (3) increases in child prosocial behavior, (4) decreases in hyperactive behaviors, and (5) high levels of satisfaction with the intervention.ConclusionsThis online program, combining ABA and stress reduction practices, resulted in positive outcomes for children with autism and their families. Although this was a small sample size, this early investigation offers promise for delivering this combined intervention approach effectively online. Training small groups of parents in an online format may be a feasible, efficient service delivery method.     

Understanding perceptions underlying the self-reported stress among parents of adolescents with autism spectrum disorder: Considerations for supporting families

BackgroundParents raising adolescents with autism spectrum disorder (ASD) often report higher stress than other parents. The influence of parents’ internal, or cognitive, experiences (i.e., their own perceptions) on this elevated stress has yet to be explored. Addressing this gap may reveal opportunities for enhancing support for families by elucidating malleable targets for reducing parents’ self-reported stress and/or informing family-focused intervention. The Double ABCX Model of Family Adaptation is a framework for understanding how perceptions, social support, and personal resources (i.e., coping) may affect stress.MethodsWe examined parents’ perceptions about ASD, perceived support, and coping among 214 parents of adolescents with ASD. Regression analyses were used to explore whether these factors were associated with parenting stress among those raising adolescents with ASD. Moderation effects of positive coping on the relationship between parent perceptions and parenting stress were also explored.ResultsParent perceptions about within family support, the extent of ASD symptom predictability, and treatment being able to ‘control’ ASD were related to parenting stress. However, positive coping did not moderate the relationship between these perceptions and parenting stress.ConclusionsStudy findings emphasize significant associations between specific parental perceptions and the self-reported stress among families of adolescents with ASD. Particularly important to parenting stress were how much parents’ perceived adequate support within the family, that treatment was useful for controlling their adolescent’s ASD, and that their adolescent’s symptoms were predictable. These findings suggest that the way parents think about their adolescents’ ASD and the adequacy of the support within their own families are associated with parenting stress, and therefore may serve as treatment targets for positively affecting whole family outcomes, as well as foundations for additional research.     

Siblings of children with autism: Predictors of adjustment

As the prevalence of autism increases, so does the need to examine the effects of autism on family members of children with autism. The current study evaluated possible predictors of adjustment in siblings of children with autism. Aspects of the parents’ functioning as caregivers for a child with autism were examined to determine whether they predicted the adjustment of the child's sibling. Two hundred caregivers of 4–10-year-old children with autism who had at least one sibling without autism participated by filling out questionnaires online. Parental satisfaction with the role of caregiver for the child with autism was negatively correlated with difficulties in sibling adjustment, and it was the only significant predictor of sibling adjustment in a hierarchical regression analysis. Parental stress and parental self-efficacy were not unique contributors to sibling adjustment when other parental variables were considered. No significant relationship was found between parental therapy involvement and sibling adjustment, or between parental educational involvement and sibling adjustment. The lack of parental involvement as a predictor of sibling adjustment adds new findings to the current literature, which had found such a relationship in a previous study with a smaller sample.     

Toilet training interventions for children with autism spectrum disorder: A systematic review

BackgroundChildren on the autism spectrum can often reach independence in toileting at a later age than nonautistic children, which impacts their health outcomes, independence and social participation. This study aimed to systematically review evidence-based toilet training interventions for children on the autism spectrum, and assess the quality of existing evidence.MethodGuided by the PRISMA statement, a search of scholarly databases was conducted and the study characteristics, methodological quality and intervention components of included studies were examined.ResultsThis systematic review identified 26 studies that evaluated toilet training interventions for children on the autism spectrum. Results identified that while Azrin and Foxx’s (1971) Rapid Toilet Training approach is most widely researched for children on the autism spectrum, investigating the effects of current toilet training approaches is limited by small sample sizes, low-level study designs and variable methods of reporting outcomes.ConclusionGreater consideration of parent-child communication, children’s developmental and toileting skill level may facilitate development of toileting approaches that better meet the needs of children on the autism spectrum and their families.     

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.     

Association between regression and self injury among children with autism

Self injurious behaviors (SIBs) are challenging clinical problems in individuals with autism spectrum disorders (ASDs). This study is one of the first and largest to utilize inpatient data to examine the associations between autism, developmental regression, and SIBs. Medical records of 125 neurobehavioral hospitalized patients with diagnoses of ASDs and SIBs between 4 and 17 years of age were reviewed. Data were collected from medical records on the type and frequency of SIBs and a history of language, social, or behavioral regression during development. The children with a history of any type of developmental regression (social, behavioral, or language) were more likely to have a diagnosis of autistic disorder than other ASD diagnoses. There were no significant differences in the occurrence of self injurious or other problem behaviors (such as aggression or disruption) between children with and without regression. Regression may influence the diagnostic considerations in ASDs but does not seem to influence the clinical phenotype with regard to behavioral issues. Additional data analyses explored the frequencies and subtypes of SIBs and other medical diagnoses in ASDs, with intellectual disability and disruptive behavior disorder found most commonly.     

The role of family cohesion in the psychological adjustment of non-Hispanic White and Hispanic mothers of children with autism spectrum disorder

The current study utilizes a process-oriented approach to understand both personal and family factors influencing the development of depressive symptoms among non-Hispanic White and Hispanic mothers of children with ASD. Family cohesion was hypothesized to mediate the associations between the personal factors (optimism, benefit finding, social support) and depressive symptoms. Mothers of 117 children with ASD (Hispanic n = 73; non-Hispanic White n = 44) completed measures of depressive symptoms, family cohesion, social support, optimism, and benefit finding. Results from this study indicate that optimism, benefit finding, and social support are important predictors of positive maternal adjustment. Furthermore, these factors contribute to better family functioning, namely family cohesion. The mediation models containing optimism, benefit finding, partner and family support were significant for both Hispanic and non-Hispanic White mothers, suggesting a similar mediation process for both racial/ethnic groups. However, family cohesion was a significant mediator of the relationship between friend support and depressive symptoms for Hispanic mothers only. The results of this study complement and extend previous research examining family functioning among mothers of children with ASD and have implications for the development of interventions aimed at increasing maternal well-being.     

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.     

Remote versus face-to-face delivery of early intervention programs for children with autism spectrum disorders: Perceptions of rural families and service providers

To date, research investigating the use of remote technologies to extend face-to-face early intervention services for children with autism spectrum disorder (ASD) is limited. This study explored the perceived advantages and disadvantages of a follow-up early intervention service delivered via remote technology, as compared to previous face-to-face services. The remote technology service focused on parent coaching rather than direct intervention with the child. A generic method of qualitative enquiry involving semi-structured interviews was used to explore the experiences of four rurally-based parents of children with ASD, eight rurally-based service providers, and a metropolitan-based ASD-specialist in regards to their participation in remote technology and face-to-face services. Qualitative content analysis revealed that the parents, service providers and the ASD-specialist perceived remote technologies to be beneficial in: (a) upskilling of parents and local service provider; (b) reducing cost, time and travel; (c) flexible, regular, ongoing support; (d) enabling families to access support from home, and (e) enhancing connections between team members. However, the participants were often frustrated by technical difficulties, and all agreed that remote technology should augment rather than replace face-to-face contact. This study provides preliminary support for the use of remote technologies to extend early intervention services for children with ASD.