Parental Perceptions and Child Emotional and Behavioral Problems in Autism

Emotional and behavioral difficulties in children with autism often present problems for families seeking appropriate treatment interventions. Using data from the 2011 Survey of Pathways to Diagnosis and Services, ordinal logistic regression models were used to examine the association between parental perceptions about autism and their reports of child emotional and behavioral problems. Results showed that parents who attributed their child’s autism to environmental factors, experienced emotional upset or confusion about autism, or perceived the condition to be pervasive or burdensome, were more likely to reported clinically significant emotional and behavioral difficulties. Findings suggest that support services must consider parent perceptions when developing interventions to assist with children’s emotional and behavioral challenges. Implications for practice and research are discussed.     

Randomized Controlled Trial for Early Intervention for Autism: A Pilot Study of the Autism 1-2-3 Project

We piloted a 2-week “Autism-1-2-3” early intervention for children with autism and their parents immediately after diagnosis that targeted at (1) eye contact, (2) gesture and (3) vocalization/words. Seventeen children were randomized into the Intervention (n = 9) and Control (n = 8) groups. Outcome measures included the Autism Diagnostic Observation Schedule, Ritvo-Freeman Real Life Rating Scale, Symbolic Play Test, and Parenting Stress Index. Children with autism improved in language/communication, reciprocal social interaction, and symbolic play. Parents perceived significant improvement in their children’s language, social interaction, and their own stress level. This intervention can serve as short-term training on communication and social interaction for children with autism, and reduce the stress of their parents during the long waiting time for public health services.     

Mothers' Recollections of Early Features of Autism Spectrum Disorders

Background:  Early intervention is recommended for autism spectrum disorders but often this is delayed because children have not received a formal diagnosis. Nonetheless parents are likely to identify features of ASD from an early age. The main aim of this study was to document through thematic analysis how parents described the features that alerted them to the child's difficulties.
Method:  From a population of children diagnosed at a specialist, community-based clinic, 72 parents agreed to be interviewed at home about their recollections of early difficulties which were analysed thematically.
Results:  Two-thirds of parents reported the child's problems were apparent by 18 months with speech and communication difficulties, along with behaviour problems, being the most commonly reported. Statistical analyses identified some relationships between certain features and the age of the child when they became apparent. Clusters of features were also identified.
Conclusions:  It is argued that health visitors and childcare personnel should be knowledgeable about the early signs of ASD and of the strategies required to promote the development of children whose parents report these early features of ASD. They should be proficient in sharing their knowledge with parents so that assessment and intervention can begin earlier.     

Communication Intervention for Young Children with Severe Neurodevelopmental Disabilities Via Telehealth

Young children with neurodevelopmental disorders such as autism spectrum disorders (ASD) and Rett syndrome often experience severe communication impairments. This study examined the efficacy of parent-implemented communication assessment and intervention with remote coaching via telehealth on the acquisition of early communication skills of three young children with ASD (2) and Rett syndrome (1). Efficacy of the intervention was evaluated using single-case experimental designs. First, functional assessment was used to identify idiosyncratic/potentially communicative responses and contexts for each child. Next, parents implemented functional communication training (FCT). All of the children acquired the targeted communication responses. The findings support the efficacy of telehealth as a service delivery model to coach parents on intervention strategies for their children’s early communication skills.     

Feasibility and potential efficacy of the family-centered Prevent-Teach-Reinforce model with families of children with developmental disorders

This study examined the feasibility and potential efficacy of the family-centered Prevent-Teach-Reinforce (PTR) model with three families of young children with an autism spectrum disorder or language delay with sensory processing problems. Particularly, the study assessed the family adherence to the PTR intervention, changes in child behavior, family use of the Individualized Behavior Rating Scale Tool (IBRST), procedural integrity, and social validity. A multiple-baseline design across families was used to examine the functional relation between parent-implemented PTR intervention and changes in child behavior. Results indicated that the family-centered PTR process was successful in promoting parents to design and implement the PTR intervention plans with fidelity, and the parents’ implemented intervention plans were effective in increasing replacement behavior and decreasing problem behavior across children. The results also indicated that the parents successfully used the IBRST to monitor their child's progress and were highly satisfied with the PTR intervention process and outcomes for their children.     

The Autism Family Experience Questionnaire (AFEQ): An Ecologically-Valid,Parent-Nominated Measure of Family Experience,Quality of Life and Prioritised Outcomes for Early Intervention

There is a lack of measures that reflect the intervention priorities of parents of children with autism spectrum disorder (ASD) and that assess the impact of interventions on family experience and quality of life. The Autism Family Experience Questionnaire (AFEQ) was developed through focus groups and online consultation with parents, and reflected parental priorities. It was then administered to the parents of children enrolled in the Pre-school Autism Communication Trial and its 6-year follow-up study. The AFEQ showed good convergent validity with well-established measures of child adaptive functioning, parental mental health and parental wellbeing. It was sensitive to change in response to a parent-mediated intervention for young children with autism, showing treatment effect at treatment endpoint which increased at six-year follow-up.     

Improving Functional Language and Social Motivation with a Parent-Mediated Intervention for Toddlers with Autism Spectrum Disorder

Recent research suggests that children with autism spectrum disorder (ASD) may now be reliably identified in later infancy, highlighting the need for empirically-validated interventions for infants and toddlers with early symptoms of ASD. Using a multiple baseline design across 15- to 21-month-old toddlers, this study implemented a brief, parent-mediated, Pivotal Response Treatment program, focusing on improving expressive communication. The results indicated that verbal communication improved as a consequence of the intervention, with concomitant improvements in untreated areas for all participants. Following the intervention, symptoms of autism decreased and parents reported satisfaction with the program’s ease of implementation and observed child gains. The results are discussed in terms of developing very early interventions to improve developmental trajectories for infants and toddlers.     

Coping over time: the parents of children with autism

Background Although coping with autism has been examined in a number of papers, virtually no research exists on how families cope over time. This paper reports the results of a longitudinal study of parents coping with autism over a period of approximately a decade. Methods The research method for the study was based on ethnographic methods that emphasized in‐depth interviews and participant observation. The sample for this study consisted of 28 parents (19 mothers and nine fathers) of children with autism. The instrument for the interviews consisted of questions concerning: the child’s medical history and referral experience, the child’s present symptomatology, the effects of the child’s problems on the parent’s well‐being, the effects of autism on the family’s social life, parental coping strategies, illness conceptualization and the parents’ expectations for the future. Results and conclusions Coping strategies changed from the time of the initial study, as fewer parents coped through reliance on service providers, family support, social withdrawal and individualism and relatively more parents coped through their religious faith and other emotion‐focused strategies. The results tentatively support previous research on coping that indicates that aging is linked to the use of more emotion‐focused coping strategies.     

Initial Efficacy of Project ImPACT: A Parent-Mediated Social Communication Intervention for Young Children with ASD

Project ImPACT is a parent-mediated social communication intervention for young children with ASD that was developed in community settings to encourage dissemination. A single-subject, multiple-baseline design was conducted across 8 preschoolers with ASD and their mothers to examine the efficacy of the model for improving parent intervention fidelity and child spontaneous language. Multilevel modeling was used to examine the relationship between parent fidelity and child language within session. All parents increased their use of the intervention techniques. Improvements in spontaneous use of language targets were observed for 6 of the 8 children. There was a significant association between parents’ use of the intervention strategies and their child’s spontaneous language use.     

The effects of intellectual functioning and autism severity on outcome of early behavioral intervention for children with autism

This study assessed the relation between pre-intervention variables (cognition, socialization and communication) to outcome in young children with autism. METHOD: Twenty five children with autism (20-32 months) were enrolled in intensive behavior intervention. The children were divided into groups based on their IQ scores and on the severity of their social interaction and communication deficits [per autism diagnostic observation schedule (ADOS) scores]. Six developmental-behavioral domains including, imitation, receptive language, expressive language, nonverbal communication skills, play skills and stereotyped behaviors were assessed at pre- and post-1 year of intervention times. RESULTS: Significant progress was noted in all the six developmental-behavioral domains after 1 year of intervention. Children with higher initial cognitive levels and children with fewer measured early social interaction deficits showed better acquisition of skills in three developmental areas, receptive language, expressive language and play skills. Both groups showed better progress in Receptive language skills. Better progress in expressive language was associated with the child's social abilities, while more significant progress in play skills was related to pre-intervention cognitive level. CONCLUSIONS: These findings emphasize the importance of early intensive intervention in autism and the value of pre-intervention cognitive and social interaction levels for predicting outcome.     

Caregiver-mediated approaches to managing challenging behaviors in children with autism spectrum disorder

A significant proportion of children with autism spectrum disorder (ASD) are referred to mental health centers due to the presence of challenging behaviors. Because challenging behaviors in children and adolescents with ASD often result from underlying social and communication difficulties and comorbid anxiety, traditional caregiver-mediated behavior intervention techniques developed for children with disruptive behavior disorders may need to be adapted for this population. Behavioral interventions that target communication skills, social skills, anxiety, and sensory responsiveness in children with ASD may be needed. Notably, while best practice necessitates the involvement of caregivers in treating children and adolescents with ASD, few randomized control studies have examined the effectiveness of caregiver-implemented interventions in reducing challenging behaviors. This review summarizes the current literature with regard to caregiver-mediated behavioral interventions for children with ASD, and suggests areas for intervention development and research.     

The FAQ self-report is a valid instrument to characterize endophenotypes of the autistic spectrum in parents of children with autism

Background

We have previously developed the FAQ self-report, an adaptation of the Baron-Cohen's Autism Quotient self-report, in order to detect traits of the autistic spectrum in the parents and siblings of children with autism. We have previously shown that parents of children with autism show significant differences in their global scores and in their social functioning scores according to their answers to the FAQ self-report.

Objective

Our aim was to validate the FAQ self-report in a population of control parents, and to confirm our previous results concerning parents of children with autism.

Methodology

Hundred and twenty-seven adults (67 female, 60 male), parents of children with normal development were recruited in the general population. They were asked to fulfill the 40 questions of the FAQ self-report at two different times. Sixty-six parents of children with autism were asked to fulfill the FAQ self-report, for group comparisons. Statistical factor analysis and test-retest reliability analysis was performed with the Matlab toolbox^© software.

Results

Statistical factor analysis and test-retest reliability show that the FAQ is structured in two main factors, socialization and communication on one hand, rigidity and imagination on the other, with good test-retest reliability. Further comparison between parents of children with autism and control parents shows a significant difference between the two groups for the socialization and communication domain, and for the global score. We show for the first time that scores of the parents of children with autism remain unchanged from infancy to adulthood.

Conclusion

The FAQ is the first French validated self-report focused on the detection of traits of the autistic spectrum in parents and siblings of children with autism. It is structured in two main factors, corresponding to imagination/rigidity, which are negatively correlated, and communication and socialization, which are positively correlated. The FAQ is therefore a reliable instrument to measure endophenotypes associated with the autistic spectrum in parents of children with autism, and may be useful in genetic studies.     

Telepractice parent-implemented training and coaching in a rural area in the UK: Impact on mothers and their children with autism

BackgroundParent-implemented interventions are reported to have positive outcomes for both children with autism and their parents. Online parent training and coaching have been increasingly used as an effective alternative or supplemental to traditional face-to-face services, especially after the start of the Covid-19 pandemic. The purpose of this study was to examine the extent to which parents of children with autism can implement a set of newly acquired strategies and the impact these had on their children’s communication skills.MethodFour mother–child dyads from a rural area in the UK participated in the study following a multiple-baseline design across strategies. Asynchronous training and synchronous coaching were provided, all online.ResultsThe present study extended the results of the original US based study it replicated (Meadan et al., 2016). Mothers learned to use the targeted naturalistic teaching strategies they were trained and coached in (i.e., i-PiCS- internet-based Parent-implemented Communication Strategies) and their children’s responsiveness and initiations of communication increased and were mostly maintained after the end of the study. Changes in the mothers’ use of strategies were observed in many cases even after training only, and the strategy of time delay was linked to increases in the children’s initiations of communication.ConclusionsThis replication study showed that i-PiCS is an appropriate intervention to use with mothers of children with autism in the UK and telepractice training and coaching can be a feasible and effective service delivery method.     

What do we know about home education and autism? A thematic synthesis review

BackgroundMainstream education can be difficult for autistic children given the social communication difficulties, highly focused interests and sensory sensitives associated with autism. Educators can still find providing a safe, inclusive and supportive environment for autistic students challenging. Subsequently some parents decide to remove their children from school and home educate. The purpose of this thematic review is to synthesise reported findings on home educating autistic children who have previously attended formal education.MethodPRISMA guidelines informed the review process. Articles included were published in the last 10 years and specific to autistic children being educated at home. Of the 22 articles meeting eligibility for full text review, 10 matched the final inclusion criteria.ResultsFindings related to four main themes emerging from the synthesis: the motivations and reasons that led parents to home educate their autistic children; parents’ experiences of home educating; practices and pedagogical approaches used by parents; and the impact of home education on the outcomes for autistic students. Findings revealed that home education can be a positive experience for families with good academic and social outcomes for autistic children and young people. Limitations of the evidence base are considered.ConclusionAlthough not all parents may be in a position to home educate their children, this review indicates that parents with appropriate educational, financial and social supports have found home educating their autistic child empowering. They report being able to provide flexible, balanced and individualised education leading to positive outcomes.     

Paternal Autistic Traits are Predictive of Infants Visual Attention

Since subthreshold autistic social impairments aggregate in family members, and since attentional dysfunctions appear to be one of the earliest cognitive markers of children with autism, we investigated in the general population the relationship between infants’ attentional functioning and the autistic traits measured in their parents. Orienting and alerting attention systems were measured in 8-month-old infants using a spatial cueing paradigm. Results showed that only paternal autistic traits were linked to their children’s: (1) attentional disengagement; (2) rapid attentional orienting and (3) alerting. Our findings suggest that an early dysfunction of orienting and alerting systems might alter the developmental trajectory of future ability in social cognition and communication.     

Analysis of pragmatic aspects of communication behavior of verbal and nonverbal autistic children

The analysis and intervention of communication is an important focus of autism research. The present study is a microanalysis of the communicative behaviour of 10 autistic children with their parents and a therapist. Protests, appropriate initiation and responses of the children were analysed in relation to demands and the specific feedback of the adults. After 20 months of structured therapy changes in the communicative behaviour of the participants were demonstrated. Autistic children showed different communicative pattern with their parents compared to a therapist. The non-verbal group exhibited significantly more protests and decreased responsivity with their parents compared to the therapist. The verbal group interacted with their parents predominantly by echolalia. After 20 months a significant reduction in protests, increased compliance and responsivity were obvious in the non-verbal group. The verbal group showed a reduction in echolalia as well as increased responsive and spontaneous communication. The results demonstrate that even non-verbal autistic children are sensitive towards different interaction partners. Over the observation period participants showed a reduction in behaviour problems and positive developments of communicative behaviour.     

Treatment approach,autism severity and intervention outcomes in young children

The current study examined the relation between autism severity at baseline, type of intervention employed and outcomes in young children with autism spectrum disorder (ASD). Seventy-eight children with ASD, aged 15–35 months (M = 25.4, SD = 4.2), received either applied behavioral analysis (ABA) or integration of several intervention approaches (Eclectic) in community center-based programs. Outcome was measured after 1 year of intervention using standardized autism diagnostic tests, and cognitive and adaptive skills evaluations. ASD diagnosis was highly stable (99%). Both intervention groups improved significantly in verbal cognitive abilities and in socialization and communication adaptive skills, but no significant difference between the intervention groups was documented. Less severe autism symptoms at baseline were associated with better progress in adaptive skills and in cognitive abilities. Within the group with less severe autism symptoms, those who received Eclectic intervention had a better outcome than those who received ABA in communication and socialization adaptive skills as reported by the parents, but not in the standardized cognitive test results. The child's baseline social abilities and deficits appear to be crucial variables for intervention outcomes and should be considered in treatment approach decision-making.     

Identifying early intervention targets for children with autism in inclusive school settings

This study assessed play and social behavior of young children with autism in inclusive school settings to identify important targets for intervention. Data were collected for five children with autism and for typically developing peers. All children with autism received intervention in one-on-one settings but did not have individual education plan goals that provided systematic intervention for developing play and social skills in their school settings. Results indicated the children with autism and their typically developing peers played with a comparable number of stimulus items (e.g., toys), but the children with autism engaged in these activities for shorter durations. Both children with autism and their typically developing peers engaged in similar levels of social interaction with adults. However, the children with autism rarely or never engaged in social interactions with their peers, whereas the typically developing peers frequently engaged in social interactions with other children. The results suggest important targets for intervention.     

Family accommodation of anxiety in a community sample of children on the autism spectrum

Anxiety is recognised as one of the most common co-occurring conditions for individuals with a diagnosis on the autism spectrum, with approximately 40 % of children on the spectrum receiving a clinical diagnosis of an anxiety disorder. To date, research has tended to focus upon understanding presentation and evaluating treatment, with little focus on assessing systemic factors, such as the way that family members accommodate the anxiety. This study aimed to investigate the relationship between parent and child anxiety levels and child autism characteristics on the four domains of family accommodation; Participation, Modification, Distress, and Consequence. A community sample (n = 132) of parents of children on the spectrum completed questionnaires on their child’s autism characteristics and anxiety symptomatology as well as their own levels of anxiety and family accommodation behaviours. Regression models identified specific aspects of child anxiety as well as parent anxiety as predictive of family accommodation, with the child’s difficulties with uncertainty being a consistent predictor of all four domains. Clinical and research implications of this study, including the importance of understanding similarities or differences in the nature and consequence of family accommodation in children on the autism spectrum, are discussed.     

“It was like walking without knowing where I was going”: A Qualitative Study of Autism in a UK Somali Migrant Community

Increasing recognition of autism in Somali migrant communities means that appropriate support services are needed. Attitudes to autism and barriers related to help-seeking in these communities are poorly understood. We aimed to assess what families affected by autism need, and how health, education and social care services can support them. In partnership with the local Somali community the research team conducted 15 in-depth interviews with parents affected by autism. Two themes are reported; ‘Perceptions of Autism’ and ‘Navigating the System’. Our research shows the importance of understanding cultural views of autism and the need to raise awareness, reduce stigma and provide support to encourage families not to delay seeking help for their children.