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Children and young people can be valuable partners in research, giving their unique perspectives on what and how research should be done. However, disabled children are less commonly involved in research than their non-disabled peers. This review investigated how disabled children have been involved as research partners; specifically how they have been recruited, the practicalities and challenges of involvement and how these have been overcome, and impacts of involvement for research, and disabled children and young people. The INVOLVE definition of involvement and the Equality and Human Rights Commission definition of disability were used. Relevant bibliographic databases were searched. Websites were searched for grey literature. Included studies had involved disabled children and young people aged 5-25 years in any study design. Reviews, guidelines, reports and other documents from the grey literature were eligible for inclusion. Twenty-two papers were included: seven reviews, eight original research papers, three reports, three guidelines and one webpage. Nine examples of involvement were identified. Recommendations included developing effective communication techniques, using flexible methods that can be adapted to needs and preferences, and ensuring that sufficient support and funding is available for researchers undertaking involvement. Positive impacts of involvement for disabled children included increased confidence, self-esteem and independence. Positive impacts for research were identified. Involving disabled children in research can present challenges; many of these can be overcome with sufficient time, planning and resources. More needs to be done to find ways to involve those with non-verbal communication. Generally, few details were reported about disabled children and young people's involvement in studies, and the quality of evidence was low. Although a range of positive impacts were identified, the majority of these were authors' opinions rather than data. There remains scope for methodological research to inform appropriate approaches to public and patient involvement in childhood disability research. [ABSTRACT FROM AUTHOR]

Background: Parental self‐efficacy describes parents' self‐perceived competence in fulfilling their roles. The Parenting Sense of Competence Scale (PSOC) is one of the most commonly used self‐report instruments, allowing for parental self‐efficacy measurement. Methods: This paper summarizes the results of three studies (total N = 2088) conducted to examine factor structure, internal consistency, test–retest reliability and criterion validity of the Polish version of PSOC (PSOC‐PL). The studies were carried out among parents (mothers and fathers) of typically developing 14‐ and 15‐year‐olds (Study 1, n = 1404) as well as among parents of typically developing children aged 6–16 (Study 2, n = 248), parents of typically developing children and children with a diagnosis of autism spectrum disorder (Study 3, n = 436, ages ranged from 6 to 13). Results: Confirmatory factor analysis (Study 1) demonstrated an acceptable fit of the theorized two‐factor model, with theorized Satisfaction and Efficacy factors. The subscales' internal consistencies were satisfactory across all studies (Studies 1–3), and PSOC's test–retest reliability (Study 2) over a 3‐week interval was very high. Parents of children with developmental disorders (Study 3) reported lower efficacy than parents of typically developing children. Conclusions: The results of these three studies attest that the Polish version of PSOC is a reliable and valid measure of parental self‐efficacy beliefs. [ABSTRACT FROM AUTHOR]

Background Young people with complex healthcare needs (CHNs) face the challenge of transferring from child to adult health services. This study sought to identify successful models of transitional care for young people with CHNs. Three conditions were used as exemplars: cerebral palsy, autism spectrum disorders and diabetes. Methods Scoping review: using search terms concerning transitional care, four databases were systematically searched for papers published in English between 1980 and April 2010. Additional informal search methods included recommendations from colleagues working with young people with each of the three conditions and making contact with clinical and research teams with expertise in transitional care. Inclusion and exclusion criteria were applied to define the papers selected for review. A separate review of policy documents, adolescent health and transition literature was also undertaken; 10 common summary categories for the components of high-quality services were identified. All papers were coded using a framework analysis which evaluated the data in two ways using the 10 transition categories and four elements of Normalization Process Theory that are important for successful implementation and integration of healthcare interventions. Results Nineteen papers were selected for review. A very limited literature of models of service provision was identified for young people with cerebral palsy and diabetes. No models were identified for young people with autism spectrum disorders. Furthermore most publications were either descriptions of new service provision or time-limited pilot studies with little service evaluation or consideration of key elements of effective implementation. Conclusions Despite agreement about the importance of effective transitional care, there is a paucity of evidence to inform best practice about both the process of and what constitutes effective transitional care. There is therefore an urgent need for research to evaluate current transitional care practices for young people with CHNs. [ABSTRACT FROM AUTHOR]

Background: University researchers worked with 13 children's service provider agencies to conduct a programme evaluation of parents' perceptions of the family‐centredness of service spanning 3 years (January 2015 to May 2018). Parents of Ontario children with autism spectrum disorder (ASD) receiving applied behaviour analysis (ABA) programming reported outcomes of their experience of family‐centred services (FCS) using the 20‐item Measure of Processes of Care (MPOC‐20). The purpose of this paper is to report the outcomes of the quality assurance evaluation of FCS as measured by MPOC‐20 among parents of children with ASD receiving ABA services. Methods: A total of 11 490 surveys (from 21 571 potential respondents [53.3%]) were completed. Means and proportions were used to describe the demographics, service utilization and MPOC‐20 scores with its 7‐point Likert scales, ranging from 1 (lowest) to 7 (highest). Results: The overall provincial MPOC scores were consistent over the 3 years, ranging from very good to excellent, with Respectful and Supportive Care (n = 11 348, x¯ = 6.27, SD = 0.83) reporting the highest scale score and Providing General Information (n = 10 485, x¯ = 5.51, SD = 1.43) the lowest. Conclusion: Given the consistently high MPOC scores found in this and other programme evaluations, it is believed that health service providers have caught up to the FCS quality standards proposed 30 years ago. For this reason, the developers of MPOC are now planning a revision of the measure to address its ceiling effects and to integrate contemporary perspectives on family‐centred practice for children and their families. [ABSTRACT FROM AUTHOR]

Few children have a ‘pure’ diagnosis of neuropsychiatric disorders such as attention deficit hyperactivity disorder or autism. Most have complex, overlapping symptoms, and it is often these associated and common comorbidities that cause as much, if not more impairments, than the core symptoms. Prescribing decisions are therefore complex and made on the basis of eliciting a range of agreed ‘target symptoms’. At present, however, there are no agreed systems that allow monitoring of all areas of potential change, and few services are able to monitor symptoms, side effects, impact on family life and individual children’s quality of life systematically. At best many clinics use a plethora of paper-based standardized questionnaires, based on individual diagnoses. This article describes the development of a novel biomedical informatics system that has been designed to allow parents, professionals and children to use a web-based, real-time symptom monitoring system to enable more effective treatments, better pathways of shared care, and more equitable and efficient service delivery for this group of vulnerable children. [ABSTRACT FROM AUTHOR]

Research groups across Europe have been networking to share information and ideas about research on preschool children with autism. The paper describes preliminary work to develop capacity for future multi-site randomized controlled trials of early intervention, with a specific focus on the need to measure treatment adherence where parents deliver therapy. The paper includes a review of randomized and controlled studies of parent-mediated early intervention from two sources, a recent Cochrane Collaboration review and a mapping of European early intervention studies in autism published since 2002. The data extracted focused on methods for describing parent adherence, that is, how and to what extent parents carry out the strategies taught them by therapists. Less than half of the 32 studies reviewed included any measure of parent adherence. Only seven included a direct assessment method. The challenges of developing pan- European early intervention evaluation studies are discussed, including choice of intervention model and of important outcomes, the need for translation of measurement tools and achievement of joint training to reliability of assessors. Measurement of parent-child interaction style and of adherence to strategies taught need further study. [ABSTRACT FROM AUTHOR]

Background Wirral University Teaching Hospital is a large district general hospital situated on the Wirral Peninsula, UK. Because of the district's geographical and demographic characteristics, Wirral is an ideal location for population-based studies. Information on community paediatric referrals, case mix and outcomes is scarce. We took advantage of our situation to conduct an epidemiological study of referrals to community paediatrics in Wirral. A companion paper examines referrals to general paediatricians during the same period. Methods A prospective observational study of community paediatric outpatient referrals between 1 February and 31 May 2006 for all children under the age of 15 offered a new patient appointment during the study period. The study was conducted using the same methodology as a previous population-based study of community paediatric outpatients in Northampton, UK in 1998. We compared our results with this previous study. Results The referral rate was 10.1 per 1000 children under 15 per annum. School nurses and health visitors made nearly half the referrals, with general practitioners referring most of the remainder. Compared with the Northampton study, more children were seen by consultants. Case mix showed a shift towards behavioural and neurodevelopmental disorders, with less general paediatrics. Attention deficit hyperactivity disorder was the commonest disorder seen (28.2%), a significant increase from the previous study (3.4%) ( P < 0.01). Autism spectrum disorder showed little change (8.1% vs. 9.6%; NS). The Wirral study showed significantly more follow-up compared with the Northampton. Conclusions This population-based study gives a unique insight into the epidemiology of referrals to community paediatricians in the UK in 2006 and how these differ from those recorded in a different UK district in 1998. [ABSTRACT FROM AUTHOR]

The article presents abstracts of articles related to children's health and care which include "Social (pragmatic) communication disorders and autism spectrum disorder," by G. Baird and C. F. Norbury, " Poverty and child health in the UK: using evidence for action," by S. Wickham and colleagues, and "Predictors of poor school readiness in children without developmental delay at age 2," by B. B. Nelson and colleagues.

Currently, it is held by many that educational interventions are those most likely to make a significant difference to the prognosis and well-being of a child with an autistic spectrum disorder (ASD). Yet, decision making about educational interventions and provision in ASD is often based on beliefs, tradition and assumptions, rather than on empirical evidence. This can lead to inappropriate or ineffective provision and can cause confusion and conflict between and within professional groups and parents. Little rigorous research evidence exists to guide decisions for children with ASD. This is true for educational practice generally, and for children with other special educational needs. Practitioners and parents alike are keen for good information on how best to educate children with ASD. It was against this background that the Department for Education and Skills (DfES) and Department of Health (DoH) convened a working group of experienced practitioners and parents to produce the ‘Good Practice Guidance on ASDs’. This paper explores the need for the DfES/DoH Guidance, describes its structure and content and then suggests why research evidence is sparse and how future research might be enhanced to inform practice. [ABSTRACT FROM AUTHOR]

Comments on a study which established whether children who developed autism after measles, mumps and rubella (MMR) vaccination had a different consultation pattern to controls around the time of MMR vaccination. Median time between MMR and diagnosis of autism; Suggestion that parents of children with autism expressed concern about changes in their child soon after MMR vaccination.

Abstract: Aims: To explore 40 years of Child Development Centre (CDC) activity and outcomes at Northampton General Hospital 1974–2014. Methods: The study comprises 3 data sets: a published report from 1974 to 1999, an internal audit from 2001 to 2004, and more recent data collected from 2005 to 2014. The medical notes of all children who were assessed by the CDC in 2014 were reviewed, along with referral data collected by the CDC manager from this year and the preceding 10 years. Results: From January 1, 1974 to December 31, 2014, 3,786 children were assessed. The male to female ratio is 2.8:1 from 2005 to 2014. Referrals for behavioural difficulties increased from 10% (10/100 referrals) in 1999–2004 to 17.8% (18/101 referrals) in 2014. Similarly, referrals for social and communication problems, “interaction” increased two and a half fold from 10% (10/100 referrals) in 1999–2004 to 26.7% (27/101 referrals) in 2014. Between 2004 and 2014, numbers of referrals for “developmental delay” halved (22.2% to 12%). Conclusion: We are aware of no other comparable extant UK CDC database. Services should plan for a referral rate of 6.5 per 1,000 preschool children. Between 1974 and 2014, there has clearly been a change in recorded assessment outcomes. From the mid‐1980s, this reflects the change to a preschool assessment role and a shift away from purely educational outcome to include medical conditions. Covering 1974–2014, we demonstrate a clear increase in the number of referrals together with an increasing demand for assessments for social interaction and behavioural difficulties. This reflects the increased awareness of these neurodevelopmental difficulties and the changing diagnostic criteria which will now more likely result in an Autistic Spectrum Disorder diagnosis than previously. Together, these two features are most likely to have considerable implications for service development within Child Development Centres (CDCs) and Child Development Teams (CDTs). [ABSTRACT FROM AUTHOR]

The detection and diagnosis of autism may be delayed until middle childhood, 3-4 years after its onset. This is more likely in high-functioning autism and in cases of co-morbidity with mental retardation. Such delays have serious effects on children and their families as well as on the provision of clinical and educational resources. In addition to greater awareness among professionals and to the development of comprehensive services, early detection could be facilitated by screening for early signs and symptoms of autism. The instruments that have been developed to rate autistic behaviours, particularly in pre-school children, are reviewed in this paper. Although the majority of these observational or informant-based measures were not initially designed for screening purposes, previous research findings from their application could be useful in the future development of such a screening instrument. Relevant research findings are discussed and suggestions are made for further evaluation in appropriate populations. [ABSTRACT FROM AUTHOR]

Background: Children born to migrant parents have higher rates of language difficulties, intellectual disability and autism. This study explores the relationship between migration, ethnicity and reasons for early years referrals to community paediatrics in a diverse multi‐cultural population in a city in south west England. Methods: Observational retrospective study from a community paediatric service serving a multi‐cultural urban population from June 2012 to February 2016. We tested associations of ethnicity and parental birth origin with reason for referral (developmental or non‐developmental) for children under 5 years old and estimated crude rate ratios for referrals using population census data. Results: Data were available for 514 children (52% white or mixed race, 16% Asian, 21% African diaspora, and 11.5% Somali); 53% had two UK‐born parents while 22% had two migrant (non‐UK‐born) parents. Referrals were for developmental reasons in 307 (60%) including 86 for possible autism. Parental birth origin and ethnicity were associated with reason for referral (p < 0.001). Children from African diaspora, Asian or Somali backgrounds had more than twice the rate (rate ratio [RR] 2.37, 95% CI 1.88–2.99, p < 0.001) of developmental referrals compared with white or mixed‐race children. Children of Somali or African diaspora ethnicity were, respectively, six‐times (RR 5.99, 95% CI 3.24–10.8, p < 0.001) and four times (RR 4.23, 95% CI 2.44–7.29, p < 0.001) more likely to be referred for possible autism spectrum than their white or mixed‐race peers. Developmental referral as a proportion of all referrals was twice as high among children with one migrant parent (20.4%) and three times as high among children with two migrant parents (29.5%), compared with children whose parents were both UK‐born (10.7%). Conclusions: This study supports the importance of ethnicity and parental migration as factors in young children experiencing developmental difficulties, especially concerns about social communication or autism. [ABSTRACT FROM AUTHOR]

Background: Caregivers of children with autism spectrum disorder (ASD) have been shown to have unique mental health vulnerabilities that community support may buffer. Positive caregiver mental health can stimulate family resilience behaviours, such as strong communication and problem‐solving. Further, community support has been found to be related to caregiver mental health, as well as improved child functioning. The current study aims to investigate caregiver mental health as a mediator between community support and family resilience in families of a child with an autism spectrum disorder. Methods: Data obtained from caregivers of 654 children with a reported diagnosis of ASD were utilized from the 2016 National Survey of Children's Health (NSCH) public database. Results: Community support was positively correlated with family resilience and caregiver mental health. Bivariate correlations indicated significant positive associations between community support and family resilience. Caregiver mental health, significantly, partially mediated the relationship between community support and family resilience. Conclusions: The present study provides important insight into fostering caregiver health as a strategy to promote family resilience behaviours. Interventions designed to address family resilience behaviours among families of children with ASD should focus on ways that positively impact caregiver mental health. [ABSTRACT FROM AUTHOR]

Background: Children with Autism Spectrum Disorder (ASD) remain vulnerable during the Covid‐19 outbreak due to significant changes to their daily routines, social interactions and diets. In addition, these challenges may be exacerbated for children living in low‐ and middle‐income countries (LMIC) such as South Africa where there are already barriers such as poverty, access to resources and availability of support. Understanding the impact of the Covid‐19 outbreak on children with ASD is imperative in order to create awareness as well as provide equitable services and support to both children with ASD and their families. Purpose The study aimed to explore family‐reported changes for children with ASD and their reactions and responses to the Covid‐19 restrictions in South Africa. Method: A qualitative research design was employed. Twelve families consisting of different family compositions with a total of 21 family members (mothers, fathers and grandmothers) participated in the current study using semistructured interviews. Data were transcribed and analysed using a framework method for thematic analysis. Results: Findings indicated that children with ASD present with unique challenges related to Covid‐19. Negative themes such as children's obstructive reactions due to the immediate changes to their routines, increases in emotional dysregulation as well as loss of previously acquired skills as a result of lack of access to services during lockdown were reported. However, families also reported on positive changes such as improved social interactions as children became more accustomed to their new lockdown routines. Implications: The Covid‐19 response has had a negative impact on children with disabilities, specifically around access to services and support for both children with ASD and their families. While the future of the virus and impending lockdown measures is unknown, clinicians, providers and educators need to ensure that provisions are made for children's current adjustments as well as further adjustments to their current routines both during and after the pandemic. [ABSTRACT FROM AUTHOR]

Background: Thriving is defined as the growth of attributes that mark a flourishing, healthy individual and include Competence, Confidence, Connectedness, Character, Caring and Contribution to self, family, community and civil society. Thriving has been linked to positive youth outcomes in neurotypical children and adolescents but has rarely been explored for individuals on the autism spectrum. Method: This study explored the profiles and predictors of parent‐reported thriving in 111 school children on the autism spectrum, aged 6 to 14 years. Results: Parents rated children as having relative strengths in the Caring and Connectedness dimensions and relative challenges in the Competence dimension. Stronger thriving outcomes were consistently predicted by stronger socialization scores; however, the other predictors of outcome differed by dimensions. Conclusion: The current findings provide insight into the individual and contextual factors that predict thriving in children on the autism spectrum. As research into thriving is in its infancy, more work is needed to understand how child, family and contextual factors relate to thriving in individuals on the autism spectrum to foster positive outcomes. [ABSTRACT FROM AUTHOR]

Background The epidemiology of autism has been rather confusing, with very variable published prevalence figures and no clear incidence data. The cause of autism is unclear; vaccines have been incriminated. Methods Literature review and interpretation. Results The recorded prevalence of autism has increased considerably in recent years. This reflects greater recognition, with changes in diagnostic practice associated with more trained diagnosticians; broadening of diagnostic criteria to include a spectrum of disorder; a greater willingness by parents and educationalists to accept the label (in part because of entitlement to services); and better recording systems, among other factors. The cause(s) of autism remains unclear. There is a strong genetic component which, along with prenatally determined neuro-anatomical/biochemical changes, makes any post-natal ‘cause’ unlikely. Conclusions There has (probably) been no real increase in the incidence of autism. There is no scientific evidence that the measles, mumps and rubella (MMR) vaccine or the mercury preservative used in some vaccines plays any part in the aetiology or triggering of autism, even in a subgroup of children with the condition. [ABSTRACT FROM AUTHOR]

Background: The presence of a child with autism spectrum disorder (ASD) could have a strong psychological and emotional impact on typical development (TD) siblings, with different ways of adjustment and perception of fraternal relationships. In this study, we aimed to investigate the experience of the TD siblings of children with ASD, combining both quantitative and qualitative methodologies. Method: An explanatory sequential design was employed. Forty‐four TD siblings of children with ASD, aged 6 to 17 years old, participated in the study. Each participant completed the Sibling Relationship Inventory that investigated warmth, rivalry and conflict in sibling relationships. Moreover, in order to thoroughly evaluate the participants' perception of their sibling relationship, they were asked to draw themselves with their sibling with ASD in a condition of harmony and conflict. The drawings were collected and coded using the well‐validated Pictorial Assessment of Interpersonal Relationships. Quantitative and qualitative analyses were conducted. Results: In general, TD siblings showed affection for their siblings with ASD. However, males showed more conflict than females. Quantitative analyses of the drawings showed high levels of similarity between the siblings, despite the disability. In drawings, greater cohesion emerged in conditions of harmony and greater distancing in situations of conflict. Content analysis of the drawings showed that the conflict is represented mainly at home and the siblings often show opposite emotions, with TD siblings experiencing negative emotions. Moreover, adolescent TD siblings displayed more annoyance, shame and embarrassment than child TD siblings. Conclusions: It is important to combine quantitative and qualitative tools to understand the experience of TD siblings in detail. In particular, drawing is a useful tool for providing quantitative and qualitative information, supplying rich and detailed information that can be well integrated with the results coming from quantitative tools. [ABSTRACT FROM AUTHOR]

An abstract and brief review are presented for the article "Patches of Disorganization in the Neocortex of Children With Autism", by R. Stoner, M. L. Chow, M. P. Boyle et al., which appeared in a 2014 issue of the "New England Journal of Medicine".

Background: During the early years of a child's life, participation is essential for learning and development. Children with disabilities are at risk for decreased participation. The interplay between environment and participation is identified as one of the most important factors influencing successful participation. The objective of this scoping review was to synthesize peer‐reviewed literature about barriers and facilitators of participation according to the perspective of parents of children younger than 6 years with Attention Deficit Hyperactivity Disorder (ADHD), Autism Spectrum Disorder (ASD), and/ or Developmental Coordination Disorder (DCD). Methods: The scoping review followed Arksey and O'Malley's framework. Relevant studies were identified by a comprehensive search of scientific databases (PubMed and Web of Science). Studies describing perspectives of parents regarding their child's participation, written in English, and published between 2001 and September 2017 were included. Results: A total of 854 articles were retrieved, with 13 meeting the criteria. Elements contributing to perceived barriers and facilitators were identified and organized according to the International Classification of Functioning, Child–Youth framework. Concepts contained in these studies were linked to "activities and participation" (general tasks and demands, such as bedtime and dinner routines, and social, civic life, such as play and leisure). Environment‐focused factors identified were situated on "support and relationships, " "attitudes, " and "services, systems, and policies." Conclusion: The review revealed guidelines focusing on family‐centred care, communication with, and providing information to parents with young children with developmental disabilities (ADHD, DCD, and/ or ASD). [ABSTRACT FROM AUTHOR]

Background and Objectives: Studies suggest that trace element and vitamin deficiencies are common in children with autism spectrum disorder (ASD). Data describing the rates of vitamin and trace element deficiencies in the ASD population of the northwest of Ireland is lacking. We wished to determine the prevalence of zinc and vitamin A deficiency in the ASD population compared with controls within this geographical area. Methods: Parents of children aged 2–18 years with ASD were invited to participate in the study. The control group consisted of well children attending the paediatric department for routine blood sampling. Children on vitamin supplements were excluded from both ASD and control groups. Informed written consent was obtained prior to recruitment. Samples were analysed for zinc and vitamin A levels according to standardized laboratory procedures. Results: Seventy‐four of the 150 children with ASD who were invited and 72 controls underwent blood sampling. Mean zinc and vitamin A levels were normal in both groups. There were significantly more males in the ASD group (88% versus 56%, p value < 0.001). The mean (SD) zinc level was not different between the groups (ASD 11.7 [1.7] versus control 11.6 [2.1] μmol/L, p value = 0.86). The mean (standard deviation) vitamin A level was higher in the ASD group (ASD 350.6 [82.6] versus 319.2 [82.8] μg/L, p value = 0.03), but this was likely confounded by age. Conclusion: Children with ASD in the northwest of Ireland have mean zinc and vitamin A levels within the normal range. It is important that these findings are relayed to health professionals and to parents of children with ASD so that informed decisions on vitamin supplementation can be made. [ABSTRACT FROM AUTHOR]

Abstract: Children with autism spectrum disorder (ASD) and their families may benefit from the provision of additional supports in health care settings, particularly when preparing for and attending medical appointments. This review examined literature that describes experiences in medical care settings from the perspective of patients under age 18 with ASD and their caregivers. A scoping review was conducted to examine the experiences of children with ASD and their families in medical care settings. Twenty‐nine studies meeting inclusion criteria were identified and reviewed. The review indicated a number of challenges (e.g., parent‐reported problems in parent‐provider communication and overwhelming environments) as well as factors that facilitate positive experiences (e.g., providing positive reinforcement and explaining exam steps) during medical appointments. Children with ASD and their families are faced with many challenges while receiving care in medical settings. The present review identified many challenges families face, as well as facilitators of positive experiences. Understanding the unique experiences of patients with ASD and their parents will help to improve experiences in medical care settings for children, caregivers, and health care providers. [ABSTRACT FROM AUTHOR]

Comments on an editorial from "Lancet" periodical about autism. Association between markers of adverse prenatal events and subsequent manifestation of autism; Classic autistic traits; Genetic aspects of autism.

Background Advocacy has been described by parents of children with autism as an important coping strategy, enabling them to move forward by redirecting emotions into actions. A key factor in the development of collaborative and constructive partnerships between service providers and parents is having an understanding of how parents engage in advocacy and the support needed to do so. This meta-synthesis was undertaken to consolidate in-depth qualitative data from parents' perspectives of the process that they use to advocate for their children with autism. Methods A qualitative meta-synthesis was conducted, whereby 15 databases were systematically searched. Thirty-one studies were identified and appraised using an adapted version of the Critical Appraisal Skills Programme tool. Data were synthesized into themes through the steps of review, meta-aggregation, integration, and interpretation. Results The voices of 1,662 parents are presented describing the process of advocacy in the stages of seeking a diagnosis, seeking self-education, and taking action. Taking action includes 2 subthemes: seeking, access, and use of support services and community engagement and educating others. Conclusions Results highlight the significant impact that positive experiences with first-line professionals have during the diagnosis process and how these experiences lay the foundation for all future relationships with other service providers. Important implications arise from this meta-synthesis for service providers in supporting parents' advocacy and hence building constructive relationships with families with a child with autism. [ABSTRACT FROM AUTHOR]

Background Children on the autism spectrum participate less frequently, and in a narrower range of activities, than their nonautistic peers, but little is known about exact participation patterns across contexts or how this is perceived by caregivers. This study aimed to document patterns of participation and caregiver views with regard to frequency and intensity of activities. Method Caregivers of children on the spectrum aged 5 ( n = 90) and 9-10 years ( n = 128) completed the Participation and Environment Measure for Children and Youth for home, school, and community. Caregivers reported on frequency of child's participation, level of involvement, and caregivers' desire for change in participation patterns. Results Item-level analyses revealed similar patterns of participation across home, school, and community for both cohorts with some small age-appropriate differences. Caregivers generally desired increased diversity, frequency, and involvement in activities but a decreased use of electronics (computers, games, TV, and DVDs). Conclusion The possibility of autism-specific participation patterns could inform future interventions aimed at enhancing social inclusion. This warrants further investigation through multiinformant designs that seek the perspectives of the child and caregivers. [ABSTRACT FROM AUTHOR]

Background A growing line of research has sought to characterize the different presentations of autism spectrum disorder (ASD) among boys and girls. Much less is known about maternal experience and mother-child relationship in children with ASD based on child gender. The present qualitative study aimed to investigate the mother-daughter relationship from the perspective of mothers who are raising girls with ASD with normal intelligence and functional verbal communication. Methods Eleven in-depth interviews were conducted with mothers of girls with ASD, ages 10-19 years. Data were analysed in an interactive process commonly used in naturalistic inquiry. Results provide insight into the unique maternal experience of raising a daughter with ASD. Results Mothers reported a sense of exclusion from the neurotypical population and male-dominant ASD population and transformation in relationship. Themes identified were skepticism and delayed diagnosis, disbelief from others, lack of information about girls with ASD, higher social demands in adolescence, puberty challenges around hygiene, disappointment about physical appearance, vulnerability in relationships and worries about future functioning. The mother-daughter relationship started with an early expectation of a close and intimate relationship that then underwent a transformation, which challenged maternal competence, reshaped expectations and created a different bond between mother and daughter. Conclusions The findings in this qualitative study highlight the impact of gender on the maternal experience of raising a daughter with ASD and contribute to a better understanding of the needs of both mothers and daughters. These results can help providers support the mother-daughter dyad by recognizing gender-specific challenges. [ABSTRACT FROM AUTHOR]

Objective This study aimed to investigate the prevalence of guidelines and routines used nationwide when children with autism spectrum disorder (ASD) are taken care of and examined in a radiology department during a peri-radiographic process. Method A nationwide survey was compiled and distributed to 94 radiology departments throughout Sweden, i.e. those performing more than 100 000 radiographic examinations annually. The survey was designed as a web questionnaire with seven questions on possible guidelines and/or routines for the departments when preparing and taking care of children with ASD in conjunction with a radiographic procedure. The data were scrutinized, using descriptive statistics. Results In total, 86 radiology departments responded to the survey (response rate 92%). Of those departments, 40 did not examine children with ASD. None of the departments included in the study had existing guidelines underpinning the routines when preparing and performing radiographic examinations for children diagnosed with ASD. A few departments ( n = 8) would set aside more time for the procedure if it were known in advance that the child to be examined had been diagnosed with ASD. Also, some departments ( n = 7) had radiographers who were more experienced in the care of children who would be appointed to perform examinations for children with ASD. Conclusion It is suggested that guidelines should be developed in order to increase interaction in a supportive way and decrease anxiety during the peri-radiographic process with children with ASD. [ABSTRACT FROM AUTHOR]

The article presents an abstract of the article "Melatonin in Autism Spectrum Disorders: A Systematic Review and Meta-Analysis" by D. A. Rossignol and R. E. Frye and presents a brief commentary on the abstract.

Background Formal IQ tests are an important part of the diagnostic and needs-based assessment process for children with neurodevelopmental disorders. However, resources for such assessments are not always available. It has been suggested that parental estimates of their child's developmental age could serve as a proxy IQ when formal measures are unavailable. Method Parental estimates of their child's developmental age were converted to a developmental quotient (DQ) in 197 children with Autism Spectrum Disorder (ASD) aged 4-9 years, and 108 children with ADHD and intellectual disability (ADHD + ID) aged 7-15 years. Formal IQ assessments were then conducted. Parents completed the Social Communication Questionnaire ((SCQ), a measure of autism symptomatology) and a demographic questionnaire. Results In the ASD sample, 58% of parent estimates were within 15 points (i.e. one standard deviation) of the child's measured IQ score. Lower measured IQ and lower SCQ total score predicted higher parental accuracy. In the ADHD + ID sample, 74% of parental estimates were within 15 points of measured IQ. In this group, higher child IQ predicted greater parental accuracy. Parents in the ADHD + ID group were more likely to overestimate children's ability level than parents in the ASD group. Conclusions In this study, the majority of parents of children with ADHD and ID were able to estimate their child's intellectual ability level with some accuracy. Parents of children with ASD were less accurate, but this may be because these parents were focussing more on children's level of adaptive functioning, which is known to be typically lower than cognitive ability in ASD. [ABSTRACT FROM AUTHOR]

The article presents several studies related to child care and health, published in 2015 and 2016 issues of various journals. These include analysis of National Child Measurement Programme data for England by C. Hancock and others, published in "Archives of Disease in Childhood," autism in toddlers born preterm by M.A. Pritchard and others, in the journal "Pediatrics" and service use in deficit hyperactivity disorder children by D. Efron and others, in "Archives of Disease in Childhood."

Background: When a child is diagnosed with autism, parents are faced with the task of choosing from many different intervention options. To find information about the options available, parents turn to a number of different sources. This study explores parents' (n = 23) intervention decisionmaking processes and information preferences following the diagnosis of ASD for their child. Methods: Qualitative thematic analysis of verbatim transcripts from interviews and focus groups involving parents of children with an autism diagnosis was undertaken. Results: Analysis of the results revealed that there are concurrent emotional and pragmatic intervention 'journeys' undertaken by parents post diagnosis, which encompass the primary themes of: (1) information sources used, (2) parents' information preferences and (3) factors influencing intervention decision making. Parents described a journey from the point of diagnosis that involved seeking information on ASD interventions from multiple sources, with the Internet being the primary source. They were overwhelmed by the sheer volume of information available, and their preferences for information varied according to their stage in the journey post diagnosis. Parents had a 'trial and error' approach to choosing ASD interventions, with confidence increasing as they became more familiar with their child's condition, and had opportunities to explore numerous information sources about their child's diagnosis. While confidence increased over time, consideration of the effectiveness or evidence supporting interventions remained largely absent throughout the journey. Conclusion: This study highlights the need for parents of children with ASD to be supported to make informed intervention decisions, particularly with consideration for research evidence. [ABSTRACT FROM AUTHOR]

Background Resource constraints may inhibit the provision of appropriate interventions for children with neurodisabilities presenting with behavioural sleep problems. Telephone calls (TC), as opposed to home visits (HV), may be a more resource efficient means of supporting these families. Objective To conduct a preliminary investigation exploring the feasibility and acceptability of replacing HV with TC to support parents implementing sleep management strategies and to gather evidence to inform the design and methods of a full trial. Methods Parents referred to a sleep management intervention routinely delivered by a community paediatric team were alternately allocated to receive implementation support via HV (n = 7) or TC (n = 8). Activity logs recorded the frequency, duration and mode of support. Parents and practitioners were interviewed about their experiences of receiving/delivering the intervention. Results Intervention drop-out was low, the frequency, number of contacts and intervention duration appeared comparable. Parents allocated TC received less contact time. Parents valued implementation support irrespective of delivery mode and practitioners reported that despite initial reservations, implementation support via TC appeared to work well. Conclusions TC appears an acceptable and convenient mode of delivering sleep support, valued by both parents and practitioners. We recommend a full-scale trial to investigate effectiveness. [ABSTRACT FROM AUTHOR]

Background A tertiary neurodisability centre at a major London teaching hospital (Guy's and Thomas’). Aim To review the outcome after 4 years of a cohort of children with severe language delay/disorder and some features of autism, but not sufficient at the time to confirm a diagnosis of autism. Methods The notes of 227 children assessed at the centre between the age of 2 and 5 were examined to select cases. This resulted in 40 children with severe receptive language delay as the primary diagnosis and a nonverbal IQ above 70. One hundred and eight children were excluded as another diagnosis, including autism, had been made and in 79 cases original clinical notes were insufficient for re-analysis. However further exclusions due to lack of formal IQ scores, changed addresses, refusals and re-assessment delays left a total of 18 children who participated in the study. Standard measures of performance were used to assess intellectual and language functioning, in addition to clinical evaluation. Results Follow-up at a mean age of 8 years and 7 months showed that five children now showed sufficient language and social impairments for a diagnosis of childhood autism and the other 13 met criteria for atypical autism although nine of these showed some recovery in their language skills. The severity of social communication impairments and repetitive behaviours in the original notes were associated with the severity of autism when re-assessed. From parental questionnaires, none of the children was considered to have developed ‘true friendships’ with reciprocal interaction, sharing and coinitiation of activities. Some tried but didn’t succeed while others were ‘loners’ who preferred their own company. All 18 children had a statement. Ten children attended specialist educational provision (six in a language unit, two in an MLD school and two in an autism unit) and the others had help in mainstream. Conclusions The authors thought they... [ABSTRACT FROM AUTHOR]

Background There are few published research studies in which siblings of children with autism spectrum disorder ( ASD) provide self-reports about their own behavioural and emotional problems and their sibling relationships. Reliance on parent reports may lead to incomplete conclusions about the experiences of siblings themselves. Methods Siblings 7-17 years and their mothers from 94 families of children with ASD were recruited. Mothers reported on family demographics, the behavioural and emotional problems of their child with ASD, and on their own symptoms of depression. Siblings reported on their relationship with their brother or sister with ASD, and siblings 11+ years of age also self-reported on their behavioural and emotional problems. Results Compared with normative British data, siblings reported very slightly elevated levels of behavioural and emotional problems. However, none of the mean differences were statistically significant and all group differences were associated with small or very small effect sizes - the largest being for peer problems (effect size = 0.31). Regression analysis was used to explore family systems relationships, with sibling self-reports predicted by the behaviour problems scores for the child with ASD and by maternal depression. Maternal depression did not emerge as a predictor of siblings' self-reported sibling relationships or their behavioural and emotional problems. Higher levels of behaviour problems in the child with ASD predicted decreased warmth/closeness and increased conflict in the sibling relationship. Conclusions These data support the general findings of recent research in that there was little indication of clinically meaningful elevations in behavioural and emotional problems in siblings of children with ASD. Although further research replication is required, there was some indication that sibling relationships may be at risk where the child with ASD has significant behaviour problems. [ABSTRACT FROM AUTHOR]

Background Diagnosing autistic spectrum disorder is a challenge, typically involving myriad professionals. In the current climate we explore how diagnosis is managed in the real world by professionals. Methods Using semi-structured interviews we thematically analyse data from psychiatrists, paediatricians and educational psychologists. Results While there is some consistency across and within these groups there are also a number of variances, and several important issues are highlighted. These include the problem of time and resources, the issue of location for diagnosis, the value of diagnostic tools and schedules, the need for supporting information, the difficulty of multi-agency working, the relevance of a physical examination and the eventual diagnostic label. Conclusions In the current economic climate and considering changes in guidelines there is a need to evaluate current service provision and enhance services. However, attention needs to be paid to the practical and realistic application of the suggested guidance. [ABSTRACT FROM AUTHOR]

Background Referrals to the Greater Glasgow Community Autism Team (CAT) made before the child's sixth birthday were analysed to obtain an estimation of the proportion of children in Greater Glasgow with childhood autism and investigate whether there were any variations in diagnosis rates, or in age at referral and diagnosis, depending on deprivation or geographical location. Methods An analysis was made of the database recording referrals to Greater Glasgow CAT, between 2004 and 2007 inclusive, of children referred by age 6 years, comprising 584 cases. Cumulative incidence was calculated for childhood autism. Ages at referral and diagnosis were also analysed. Results For this subset of children, there were 246 diagnosed cases of childhood autism, a cumulative incidence from 2004 until 2007 of 11.1 per year per 10 000 children aged 0-6 years. Of children with an eventual diagnosis of autism by age 6, 72% were referred by the age of 4 years. Deprivation was found to have an association with referral and diagnostic rates, with higher rates seen in the most deprived. There was geographical variation in the cumulative incidence of autism. Conclusion Given that the populations were not known to differ in any manner that would lead to a true variation, the geographical variation in the cumulative incidence of autism in children up to 6 years in Greater Glasgow observed in this study is likely to represent differences in the care pathway between areas. Such differences may also explain the observed association with deprivation. Reasons for the variation are being explored. [ABSTRACT FROM AUTHOR]

In order to provide services for children with disabilities which are family focused, strengthening and enabling families in addition to meeting the child's identified needs, it is important to understand families' lives. This study investigates whether time-use diaries can provide an acceptable tool to explore the daily lives of parents with a disabled child. A precoded time-use diary divided into 15 min time slots was designed. Father-mother pairs with a preschool child with either autism (ASD) or technology dependence (TD) were asked to complete a 7-day diary independently, over the same time period. Each parent was then interviewed separately to ascertain their experiences of using the diary. Participants were identified through their involvement with a Child Development Centre. Twenty-six parents (13 father-mother pairs) were invited to participate. Eighteen parents agreed to be involved; 16 completed the diaries and interviews. Three father-mother pairs in the ASD group and one father-mother pair in the TD group declined to be involved. One father-mother pair from the TD group withdrew from the study. Of the 18 parents who agreed to participate, 15 found the diaries acceptable and either easy or straightforward to complete. One parent with dyslexia and one who described himself as a non-reader completed the diaries successfully, finding the colour coding helpful. Parents spent between 10 and 60 min a day completing the diaries, with the median 20-30 min. The diaries provided information on the total amount of time spent on different activities and how much time parents spent together, with their other children, at home or elsewhere. The time-use diaries designed for this study were acceptable to the majority of parents and provided detailed information about their daily lives. [ABSTRACT FROM AUTHOR]

Background In the recent past, psychiatrists and paediatricians have avoided prescribing stimulant medication, such as methylphenidate and dexamphetamine to patients with autism spectrum disorders (ASD) because of both doubts about efficacy and concern that these medications make stereotypies worse. Recently, a number of small trials have suggested that methyphenidate does have a role in the management of hyperactivity in children with autistic spectrum disorders. Methods Children with ASD and attention deficit hyperactivity disorder (ADHD), and children with ADHD without ASD received standard treatment with methyphenidate from one specialist centre. A combination of standardized and novel outcome tools was used to allow both an exploratory retrospective study of 174 children and then a prospective study of a further 52 children to be carried out. Results After treatment with stimulants, the subjects in both groups showed statistically significant improvements in target symptoms of ‘hyperactivity’, ‘impulsivity’, ‘inattention’, ‘oppositionality’, ‘aggression’ and ‘intermittent explosive rage’. The Clinical Global Impression-Improvement and efficacy index measures also improved in each group. In both the retrospective and the prospective studies, there was no statistically significant difference in the degree of improvements between each group. Importantly, neither tics nor repetitive behaviours worsened in either group. Children in the ‘ADHD-only’ group who were prescribed stimulants experienced significant ‘nausea’, ‘giddiness’, ‘headaches’ and ‘sleep difficulties’, whereas sleep difficulties were the only side effect that emerged in children in the ASD with ADHD group. Conclusions Both studies presented here support previous findings from smaller studies that show children with autism and ADHD can respond as well to stimulants as children with ADHD alone. Although randomized controlled trials remain the gold standard for efficacy studies, systems like this that allow clinicians to continue rigorous and consistent monitoring for many years have a valuable role to play. Furthermore, such monitoring systems which now exist electronically can easily accumulate large data sets and reveal details about long-term effectiveness and long-term side effects of medication that are unlikely to be discovered in short-term trials. [ABSTRACT FROM AUTHOR]

Few well-constructed studies have systematically evaluated medical investigation protocols for children with autistic spectrum disorders. This is in large part due to the heterogeneous nature of the population and changing diagnostic frameworks. This review outlines the studies that have directed investigation strategies to date, and discusses how these might be applied in the clinical situation. The importance of listing the conditions that may be present on the basis of the specific clinical presentation, and using a thorough history and examination to generate a pre-test probability of the target disorders is emphasized if tests are to be useful in directing therapy or broader management approaches. [ABSTRACT FROM AUTHOR]

Background In recent years, standards of good practice have been set for services to young children with autism spectrum disorders. Methods Data were analysed on children’s use of local services during a 2-year follow-up of families involved in an evaluation of a group course for parents. Data collection began prior to publication of the standards. Results Families’ reported experiences changed over time, but for most did not meet standards suggested: involvement with a multi-agency team of professionals, having someone who acted as a key worker, and the child accessing 15 h per week of specialist provision. Conclusion The development of flexible and responsive services appears to have a long way to go to meet standards set in the Autistic Spectrum Disorders Good Practice Guidance (2002) and the National Autism Plan for Children (2003). [ABSTRACT FROM AUTHOR]

Background The experience of being a grandparent of a grandchild with autism spectrum disorder (ASD) is a previously under-researched area. This study sets out to examine the grandparents’ own perspective in an exploratory way using a qualitative approach to answer the question, ‘What is the experience like?’ Method A qualitative research project, using a purposive sampling technique and semi-structured interviews to examine the experiences of six grandparents of children with ASD diagnosed by a specialist team in a second opinion Tier 4 Child and Adolescent Mental Health Service. Results The experiences of the grandparents were characterized by three Key Themes which emerged from the interviews: (1) The Parental Bond (protective bonding towards grandchild and adult child); (2) Striving for Answers (searching for meaning); (3) Keeping Intact (holding the family together). Conclusion The study suggests some interesting insights and confirms the need for more attention to this area. A key question raised by the study is how a child-focused multidisciplinary team can embrace its role in delivering a family-centred service. The clinical implications of this project have led to a change of practice in the specialist team. Further research would be appropriate to investigate the therapeutic effectiveness and cost effectiveness of involving grandparents as part of the assessment process. [ABSTRACT FROM AUTHOR]

Abstract Background Although international interest in intensive home-based early behavioural intervention for children with autism is increasing, there is little or no published research on the experiences of families conducting these programmes. Methods One hundred and forty-one UK parents conducting Lovaas-style interventions with their young child with autism were asked to identify factors that acted as facilitative factors and barriers to the implementation of these programmes. Parents responded to written questions contained within a questionnaire survey, and their responses were subjected to a content analysis procedure. Results Several of the facilitative factors and barriers were found to be similar. For example, a supportive therapy team was the most frequently cited facilitative factor, and problems recruiting and maintaining a suitable team was the most frequently reported barrier. Other factors seemed to be more independent constructs. For example, an important barrier was the lack of time and personal energy, but plenty of time and energy was not cited as a facilitative factor. Conclusions The practical implications of these results for families and for services supporting families engaged in intensive early behavioural intervention are discussed. In addition, more general implications for the designers of behavioural intervention programmes are identified. [ABSTRACT FROM AUTHOR]

Summary It is a hard task for professionals to give and parents to receive the bad news about a child’s developmental disability. This study describes how findings about four preschool children, with difficulties suspected to lie within the autistic spectrum, were negotiated with parents by two multiprofessional groups, one in a M edical (Site M) and one in an E ducation setting (Site E). Each assessment was undertaken over half a day, the professionals jointly interacting with the child and family. All assessment discussions were audiotaped and each participant was interviewed after the assessment. Conversation analysis showed the activation of three major social-interaction frameworks: professionals at both sites applied a parent-friendly frame, but this was complemented by a hopeful-diagnostic-formulation frame at Site M, and a defocusing-of-bad-news frame at Site E. [ABSTRACT FROM AUTHOR]

A total of 60 children between 8 and 15 years of age participated in this project, 20 of whom had a sibling with autism, 20 a sibling with mental retardation and 20 a non-disabled sibling. The children were questioned about their sibling relationship and their experiences of stress. The children with a sibling with autism also completed a questionnaire on their knowledge of the autistic syndrome. Analyses revealed that the three groups were basically similar in their ratings of the frequency of stressors involving their siblings. There was a trend for children with a disabled brother or sister to rate their relationship with the sibling more positively. Correlational analyses revealed an association between both stressor frequency and appraisal and the evaluation of the relationship with the brother or sister. Siblings of children with autism had a fair understanding of the autistic syndrome, in this group, there was also an association between the children's knowledge of the autistic disorder and the quality of the sibling relationship. [ABSTRACT FROM AUTHOR]

Increased risk of injury in children with developmental disabilities. 
 LeeL.C., HarringtonR.A., ChangJ.J. & ConnorsS.L. (2007) Research in Developmental Disability , ePub. 
 DOI: 10.1016/j.ridd.2007.05.002. [ABSTRACT FROM AUTHOR]

A review is presented of the article "Psychotropic Medication Use and Polypharmacy in Children With Autism Spectrum disorders" by D. Spencer, J. Marshall, B. Post, M. Kulakodlu, C. Newschaffer, T. Dennen, F. Azocar and A. Jain, which appeared in a 2013 issue of "Pediatrics".