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One core component of the Paediatric Autism Communication Therapy--Generalised involves supporting parents to change their interaction and communication style with their child. This behaviour change has been found to affect child outcomes. Implementation science methodologies offer a range of opportunities to investigate how interventions are delivered in practice; however, few autism intervention studies have used such designs to explore the behaviour change of parents. We interviewed 27 parents and explored their use of intervention strategies after the Paediatric Autism Communication Therapy--Generalised trial. We employed the Theoretical Domains Framework and Consolidated Framework for Implementation Research to systematically explore a range of barriers and facilitators experienced by the parents associated with parents' characteristics, their context and features of the intervention. Our analysis revealed barriers and facilitators across three themes: Motivating Factors, which was further subdivided into Compatibility and Buy-In and Alignment of Goals and Outcomes; Opportunity and Support; Parent Characteristics. Almost all parents reported continued use of the Paediatric Autism Communication Therapy--Generalised strategies. Facilitators (e.g. parental confidence in using the strategies) and barriers (e.g. child's behaviour) were identified. Consideration of these factors can inform identification of implementation strategies to test in future studies of Paediatric Autism Communication Therapy--Generalised and other parent-mediated early autism interventions.

While the effectiveness of parent-mediated interventions in the field of autism spectrum disorder is well documented, information on the experience of parents involved in parent-mediated interventions is limited. We performed a systematic review with qualitative evidence synthesis to explore the experience of parent-mediated interventions in parents of children with autism spectrum disorder. PubMed, Scopus, PsycINFO, CINAHL, and Sociology Collection were searched from the date of their creation until 25 February 2022. Qualitative studies reporting parents' experience of parent-mediated interventions were included. Two independent reviewers assessed the risk of bias. The findings of the selected studies were extracted and synthesized using the meta-aggregation method. The results are reported according to PRISMA and ENTREQ guidelines. A total of 23 studies were synthesized representing 345 participants. We found 34 categories that were summarized in four synthesized themes: barriers to implementation and logistical issues, feeling overwhelmed and stressed (a need for support), facilitators of implementation, and empowerment in the parent and improvement in the child. Parents' experience of parent-mediated interventions in autism spectrum disorder is balanced between positive outcomes for them and their child, emotional struggles, and some difficulties in implementing parent-mediated interventions. Based on these results, we propose new ways to improve implementation of parent-mediated interventions and research in the field.

Background: Autistic children without intellectual disability will likely experience higher level language and communication difficulties. These may appear subtle, in that they are not immediately evident to those who do not know the child well and may not manifest in all environments. Because of this, the impact of such difficulties may be underestimated. This phenomenon has similarly attracted little research attention, meaning the extent to which subtle language and communication difficulties contribute to the needs of autistic individuals without intellectual disability may be underspecified in clinical services. Aims: To offer a detailed exploration of how relatively subtle language and communication difficulties impact on autistic children without intellectual disability and what strategies parents recognize can mediate those negative effects. Methods & Procedures: Twelve parents of autistic children from the target group (aged 8-14 years, attending mainstream school) were interviewed about how subtle language and communication difficulties impact their autistic child. Rich accounts were derived then analysed using thematic analysis. Eight of the children discussed had previously been interviewed independently in a parallel study. Comparisons are discussed in this paper. Outcomes & Results: Parents reported heterogeneous but pervasive higher level language and communication difficulties which universally impacted key areas of the children's function--peer relationships, developing independence and performance in education. Communication difficulties were also universally associated with negative emotional responses, social withdrawal and/or negative self-perceptions. While parents identified a range of ad hoc strategies and naturally occurring opportunities that improved outcomes, there was little mention of the means to address primary language and communication difficulties. The current study showed a number of parallels with child accounts, demonstrating the benefits of collecting data from both sources in clinical and research investigations. However, parents were more concerned about longer term implications of language and communication difficulties and highlighted their impact on the child developing functional independence. Conclusions & Implications: Subtle language and communication difficulties, typically identified in this higher ability autistic group, can impact significantly on key areas of childhood function. Support strategies seem to be parent generated and inconsistently applied across individuals, without the benefit of coherent specialist services. Dedicated provision and resources targeting areas of functional need may be beneficial to the group. In addition, the commonly reported association between subtle language and communication difficulties and emotional well-being indicates the need for greater exploration using empirical methods, and joined-up clinical working between speech and language therapy and mental health services.

Paediatric Autism Communication Therapy is a parent-mediated, video-aided, communication-focussed intervention for young children with autism spectrum disorder. It has been shown in a UK randomised controlled trial to lead to improvements in parent--child communication and family quality of life, together with a sustained reduction in child autism symptom severity. This qualitative study examined parental perceptions of their participation in Paediatric Autism Communication Therapy within the context of the randomised controlled trial. Semi-structured interviews were carried out with 18 parents within 12 months of completion of the therapy. The thematic analysis provides insights into parents' hopes, expectations, and learning processes when working with Paediatric Autism Communication Therapy therapists and carrying out daily practice in the home. Parents reported positive changes in their interaction and relationship with their child and improvements to their child's communication and interaction. Some also highlighted poignant realisations and emotional challenges associated with taking part in this post-diagnostic therapy. Practical difficulties were also emphasised. Implications for the clinical practice of parent-mediated interventions with young children with autism spectrum disorder are discussed. [This article was written with the PACT Consortium.]

We investigated the early sociocognitive battery (ESB), a novel measure of preverbal social communication skills, in children with autism participating in the Paediatric Autism Communication Trial-Generalised (PACT-G). The associations between ESB scores, language and autism symptoms were assessed in 249 children aged 2-11 years. The results show that ESB subscale scores (social responsiveness, joint attention and symbolic comprehension) were significantly associated with concurrent autism symptoms and receptive and expressive language levels. The pattern of association between the ESB subscale scores differed between the ADOS-2 symptom domains and expressive and receptive language. These findings indicate the potential utility of the ESB as a measure of preverbal social communication in children with autism.

The authors argue that embracing gestalt language development is an important neurodiversity-affirmative practice and offer clinical and research recommendations to promote understanding and respect for this alternative developmental pathway. They discuss the factor that affects research into gestalt language acquisition, personal accounts in which autistic people reflect on their gestalt language use, and benefits of embracing gestalts.

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.

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

Background: There are very few mechanistic studies of the long‐term impact of psychosocial interventions in childhood. The parent‐mediated Paediatric Autism Communication Therapy (PACT) RCT showed sustained effects on autistic child outcomes from pre‐school to mid‐childhood. We investigated the mechanism by which the PACT intervention achieved these effects. Methods: Of 152 children randomised to receive PACT or treatment as usual between 2 and 5 years of age, 121 (79.6%) were followed 5–6 years after the endpoint at a mean age of 10.5 years. Assessors, blind to the intervention group, measured Autism Diagnostic Observation Scale Calibrated Severity Score (ADOS CSS) for child autistic behaviours and Teacher Vineland (TVABS) for adaptive behaviour in school. Hypothesised mediators were child communication initiations with caregivers in a standard play observation (Dyadic Communication Measure for Autism, DCMA). Hypothesised moderators of mediation were baseline child non‐verbal age equivalent scores (AE), communication and symbolic development (CSBS) and 'insistence on sameness' (IS). Structural equation modelling was used in a repeated measures mediation design. Results: Good model fits were obtained. The treatment effect on child dyadic initiation with the caregiver was sustained through the follow‐up period. Increased child initiation at treatment midpoint mediated the majority (73%) of the treatment effect on follow‐up ADOS CSS. A combination of partial mediation from midpoint child initiations and the direct effect of treatment also contributed to a near‐significant total effect on follow‐up TVABS. No moderation of this mediation was found for AE, CSBS or IS. Conclusions: Early sustained increase in an autistic child's communication initiation with their caregiver is largely responsible for the long‐term effects from PACT therapy on autistic and adaptive behaviour outcomes. This supports the theoretical logic model of PACT therapy but also illuminates fundamental causal processes of social and adaptive development in autism over time: early social engagement in autism can be improved and this can have long‐term generalised outcome effects. [ABSTRACT FROM AUTHOR]

Effective support for autistic individuals is lacking in Brazil. Few centres offer services and those that do are limited in therapeutic options and geographical location. Paediatric Autism Communication Therapy is a low-intensity, evidence-based parent-mediated social-communication intervention that may be useful for this scenario. This implementation study aimed to assess the acceptability and feasibility of Paediatric Autism Communication Therapy for young autistic children (aged 2–10 years) in Brazil. Parents (n = 18) of 2- to 10-year-old autistic children and clinicians (n = 20) who work with autistic children in Brazil were interviewed and the data analysed using thematic analysis to explore their perceptions concerning the acceptability and feasibility of Paediatric Autism Communication Therapy. In addition, Paediatric Autism Communication Therapy was delivered to a case series of 15 further parent–child dyads; these parents were interviewed at the end of the therapy, and the data were analysed using thematic analysis. All parents and clinicians had favourable opinions about the acceptability, feasibility and perceived effectiveness of a parent-mediated intervention conducted mainly in the home. However, they also highlighted obstacles concerning the implementation of Paediatric Autism Communication Therapy in Brazil, especially related to engaging Brazilian parents in a parent-mediated model of therapy. Based on these data, minor adaptations were made to the original Paediatric Autism Communication Therapy protocol to facilitate the implementation of the intervention in Brazil. Parents of autistic children and health professionals who work with autistic children in Brazil had positive views about introducing Paediatric Autism Communication Therapy as a therapy for autistic children in Brazil. The parents and clinicians also mentioned some difficulties about using Paediatric Autism Communication Therapy in Brazil. We made adaptations to Paediatric Autism Communication Therapy to address these difficulties. Paediatric Autism Communication Therapy is a therapy to support the development of social and communication skills for autistic children aged 2–10 years. The therapy is conducted with the autistic child's parent. Paediatric Autism Communication Therapy has not been used in Brazil before. There are few therapy options available for autistic children in Brazil and we believed that Paediatric Autism Communication Therapy may be useful. We asked three groups of people in Brazil about their views of Paediatric Autism Communication Therapy, after explaining how the therapy works. Group 1 included 18 parents of autistic children aged 2–10 years. Group 2 included 20 health professionals such as psychologists who work with autistic children. Group 3 included 15 parents of autistic children aged 2–7 years who received the Paediatric Autism Communication Therapy. We learned that parents and clinicians felt that Paediatric Autism Communication Therapy would be a beneficial therapy for autistic children in Brazil. We also found out about the challenges of using Paediatric Autism Communication Therapy in Brazil. We used these findings to make small cultural adaptations to Paediatric Autism Communication Therapy to make it more suitable for Brazil. [ABSTRACT FROM AUTHOR]

Syndromic autism has been described in children adopted after orphanage rearing. We investigated whether the same existed in children adopted after family breakdown. Families of 54/60 adopted children aged 6-11 years (mean 102 months; SD 20; 45% male) returned screening questionnaires for autism spectrum disorder (ASD); 21/54 (39%) screened positive. Detailed in-person phenotyping of screen positive cases showed ASD in 6/54 (11%), Broad ASD (sub threshold traits) in 10/54 (18.5%); 5/54 (9%) screened false positive. The ASD group showed impairments across both social communication and restrictive repetitive behaviour domains, Broad ASD was more mixed. These rates, much higher than population prevalence, are comparable with institutionalised samples. There are implications for developmental science, and assessment, treatment and policy for adopted children.

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., Author(s): Kathy Leadbitter [sup.1] [sup.8] , Catherine Aldred [sup.1] , Helen McConachie [sup.2] , Ann Le Couteur [sup.2] [sup.3] , Dharmi Kapadia [sup.1] , Tony Charman [sup.4] , Wendy Macdonald [...]

We examined predictors of mental health difficulties and wellbeing in caregivers of children with autism in the Pre-school Autism Communication Trial cohort in middle childhood (N = 104). Child's intellectual disability, daily living skills impairment, elevated emotional and behavioural difficulties, high educational level of caregiver and household income below the median significantly predicted caregivers' mental health difficulties, but autism severity, child communication skills and family circumstances did not. Lower caregiver mental wellbeing was predicted by elevated child emotional and behavioural difficulties. The need to support the mental health and wellbeing of caregivers of children with autism is discussed in light of the results., Author(s): Erica Salomone [sup.1] [sup.2] , Kathy Leadbitter [sup.3] , Catherine Aldred [sup.3] , Barbara Barrett [sup.2] , Sarah Byford [sup.2] , Tony Charman [sup.2] , Patricia Howlin [sup.2] , [...]

One core component of the Paediatric Autism Communication Therapy–Generalised involves supporting parents to change their interaction and communication style with their child. This behaviour change has been found to affect child outcomes. Implementation science methodologies offer a range of opportunities to investigate how interventions are delivered in practice; however, few autism intervention studies have used such designs to explore the behaviour change of parents. We interviewed 27 parents and explored their use of intervention strategies after the Paediatric Autism Communication Therapy–Generalised trial. We employed the Theoretical Domains Framework and Consolidated Framework for Implementation Research to systematically explore a range of barriers and facilitators experienced by the parents associated with parents' characteristics, their context and features of the intervention. Our analysis revealed barriers and facilitators across three themes: Motivating Factors, which was further subdivided into Compatibility and Buy-In and Alignment of Goals and Outcomes; Opportunity and Support; Parent Characteristics. Almost all parents reported continued use of the Paediatric Autism Communication Therapy–Generalised strategies. Facilitators (e.g. parental confidence in using the strategies) and barriers (e.g. child's behaviour) were identified. Consideration of these factors can inform identification of implementation strategies to test in future studies of Paediatric Autism Communication Therapy–Generalised and other parent-mediated early autism interventions. Many early autism interventions teach parents therapeutic strategies to help them adjust their communication style with their children. Research has shown that this behaviour change in parents leads to improvements in child communication. It is, therefore, important to learn what factors support or hinder parents in their use of therapeutic strategies learned in such interventions. This study set out to interview parents who had participated in a research trial of the Paediatric Autism Communication Therapy–Generalised intervention. We interviewed 27 caregivers and explored their use of the strategies up to 2 years after the end of the research trial. Qualitative frameworks were used to inform interview questions and data analysis. These frameworks focused on a range of contextual factors, including parents' characteristics, their context and features of the intervention. Parents reported barriers and facilitators to using Paediatric Autism Communication Therapy–Generalised strategies across three themes: Motivating Factors; Opportunity and Support; Parent Characteristics. One of these themes, Motivating Factors, was further divided into the subthemes Compatibility and Buy-In and Alignment of Goals and Outcomes. Almost all parents reported continued use of the Paediatric Autism Communication Therapy–Generalised strategies. Facilitators included parental confidence in using the strategies and barriers included child's behaviour. Consideration of these factors can inform ways to better support parents in future autism interventions. [ABSTRACT FROM AUTHOR]

While the effectiveness of parent-mediated interventions in the field of autism spectrum disorder is well documented, information on the experience of parents involved in parent-mediated interventions is limited. We performed a systematic review with qualitative evidence synthesis to explore the experience of parent-mediated interventions in parents of children with autism spectrum disorder. PubMed, Scopus, PsycINFO, CINAHL, and Sociology Collection were searched from the date of their creation until 25 February 2022. Qualitative studies reporting parents' experience of parent-mediated interventions were included. Two independent reviewers assessed the risk of bias. The findings of the selected studies were extracted and synthesized using the meta-aggregation method. The results are reported according to PRISMA and ENTREQ guidelines. A total of 23 studies were synthesized representing 345 participants. We found 34 categories that were summarized in four synthesized themes: barriers to implementation and logistical issues, feeling overwhelmed and stressed (a need for support), facilitators of implementation, and empowerment in the parent and improvement in the child. Parents' experience of parent-mediated interventions in autism spectrum disorder is balanced between positive outcomes for them and their child, emotional struggles, and some difficulties in implementing parent-mediated interventions. Based on these results, we propose new ways to improve implementation of parent-mediated interventions and research in the field. The effectiveness of parent-mediated interventions in the field of autism spectrum disorder is well documented but information on the experience of parents involved in parent-mediated interventions is limited. This study is the first synthesis of evidence concerning the experience of parents involved in parent-mediated interventions. It synthesizes the voice of 345 parents across the world into four general themes: barriers to implementation and logistical issues, feeling overwhelmed and stressed (a need for support), facilitators of implementation, and empowerment in the parent and improvement in the child. The findings of our study provide evidence that parent-mediated interventions should be adapted to the needs of each family. Specific care and support should be offered to parents in addition to parent-mediated interventions. Our study, however, highlights which outcomes are important to parents and should be considered in future studies. [ABSTRACT FROM AUTHOR]

Syndromic autism has been described in children adopted after orphanage rearing. We investigated whether the same existed in children adopted after family breakdown. Families of 54/60 adopted children aged 6-11 years (mean 102 months; SD 20; 45 % male) returned screening questionnaires for autism spectrum disorder (ASD); 21/54 (39 %) screened positive. Detailed in-person phenotyping of screen positive cases showed ASD in 6/54 (11 %), Broad ASD (sub threshold traits) in 10/54 (18.5 %); 5/54 (9 %) screened false positive. The ASD group showed impairments across both social communication and restrictive repetitive behaviour domains, Broad ASD was more mixed. These rates, much higher than population prevalence, are comparable with institutionalised samples. There are implications for developmental science, and assessment, treatment and policy for adopted children., Author(s): Jonathan Green[sup.1] , Kathy Leadbitter[sup.1] , Catherine Kay[sup.1] , Kishan Sharma[sup.2] Author Affiliations: (1) Social Development Research Group, Institute of Brain Behaviour and Mental Health, University of Manchester, Room [...]

Autism spectrum disorders (ASD) are associated with a substantial economic burden, but there is little evidence of the costs in the early years; the period in which children are increasingly likely to be diagnosed. We describe the services used by 152 children aged 24-60 months with autism, report family out-of-pocket expenses and productivity losses, and explore the relationship between family characteristics and costs. Children received a wide range of hospital and community services including relatively high levels of contact with speech and language therapists and paediatricians. Total service costs varied greatly (mean 430 British Pounds per month; range 53 British Pounds to 1,116 British Pounds), with some families receiving little statutory support. Higher costs were associated with increasing age and symptom severity.