Short Report: Exploring the extent to which Intellectual Disability is undiagnosed within children attending developmental paediatric clinics.

Intellectual Disability is under-ascertained worldwide and is associated with greater physical and mental health difficulties. This research aimed to identify clinical features and characteristics of children with Intellectual Disability in a population of 126 6-18 year olds in mainstream school, attending paediatric developmental clinics. Intellectual Disability was defined according to the DSM-5 (deficits in intellectual and adaptive functioning, present during childhood). Measures used to assess this were WISC-IV IQ (score <70) and ABAS adaptive behaviour (score =<70). Clinical features were compared from a structured clinical records investigation and logistic regression explored which factors were associated with Intellectual Disability. Twenty-eight children (22%) met the criteria for Intellectual Disability. Five variables were associated with higher odds of having Intellectual Disability: no other neurodevelopmental diagnosis, multiple other health problems, prior genetic testing, maternal smoking during pregnancy, and parental unemployment. Routinely-collected paediatric data only predicted Intellectual Disability correctly in two out of five cases. Further research is needed to verify these findings and improve identification. WHAT THIS PAPER ADDS?: Many children with Intellectual Disability, particularly a milder version, still reach adulthood without a diagnosis, despite evidence indicating that diagnosis is generally well received by children and families, and that early intervention leads to improvements in outcomes. This short report, based on a small sample of 126 children aged 6-18 in mainstream school who attended a paediatric development clinic in South East Scotland, provides tentative data on the clinical features and characteristics which are associated with Intellectual Disability. This tentative evidence suggests that the combination of a) having multiple concerns and investigations, alongside b) one or both parents being out of work (which may be related to familial undiagnosed Intellectual Disability), should raise a flag for paediatricians to further investigate the possibility of an Intellectual Disability diagnosis among these children and young people. Further research with larger samples is needed to explore this more robustly, with the potential to create an algorithm to highlight to paediatricians cases requiring formal screening for Intellectual Disability.

Psychometric properties of the School Participation Questionnaire: Testing a measure of participation-related constructs.

AIM: To explore concurrent validity, convergent validity, interrater reliability, test-retest reliability, and Rasch model analysis of the School Participation Questionnaire (SPQ), a tool for teachers to assess personal and environmental determinants of school participation. METHOD: Teachers of children with additional support needs, including intellectual disability, autism, and learning difficulties completed measures. Data were collected using the SPQ and the Participation and Environment Measure for Children and Youth (PEM-CY). Test-retest and interrater reliability were assessed using intraclass correlation coefficients (ICCs). Internal consistency was assessed with Cronbach's alpha. Concurrent and convergent validity were explored via correlations with the PEM-CY. Further psychometrics were examined using a Rasch model. RESULTS: One hundred and eighty-seven children (136 [72.7%] male; mean age 9y [range 5y 6mo-12y 10mo, SD 2y]) were assessed by 67 teachers. Cronbach's alpha, test-retest, and interrater reliability were acceptable-excellent across each SPQ scale (alphas=0.89, 0.9, 0.94, 0.79; test-retest ICCs=0.64, 0.61, 0.78, 0.62; interrater ICCs=0.85, 0.71, 0.90, 0.81). Concurrent and convergent validity were confirmed with significant positive correlations between SPQ and PEM-CY. After Mokken and Rasch model analysis, person and item reliability were good, and unidimensionality was confirmed. Mean administration time was 8.2 minutes. INTERPRETATION: The results suggest that the SPQ is a rapid, reliable, and valid tool for assessment of participation-related indicators in schools.

Social identities and mental well-being in autistic adults.

LAY ABSTRACT: Social identities are groups that we are part of and influence how we think about ourselves. However, up until now there has been little examination of the groups that autistic people may belong to, and how these groups may influence their mental health. This survey-based study investigated whether autistic adults answer questions about social groups in a similar way to non-autistic non-autistic adults, including the types and number of social groups they may belong to, and whether these are associated with depression, anxiety and positive traits of mental well-being. In total, 184 autistic adults completed an online survey with questionnaires about their demographics, social groups and mental health. The results found that autistic adults reported on their social groups similarly to non-autistic people. There was a variety in the types and numbers of groups that autistic adults identified with. Some participants reported having no groups that they identified with, whereas others reported up to four groups. These included other autistic people, their family, friends, work colleagues and activity clubs among others. Autistic adults who felt connected with more groups reported better mental well-being. Feelings of connection to other autistic people and the family were also associated with better mental well-being. These results show that it is important for autistic people to be given opportunity to be part of groups that are meaningful to them, as this may be beneficial for their mental health.

Development, psychometrics and feasibility of the School Participation Questionnaire: A teacher measure of participation related constructs.

BACKGROUND: We report development of the SPQ (School Participation Questionnaire) a teacher-completed measure of participation related constructs for schools. The SPQ was developed to support participation-related assessment, interventions, and research in the inclusive school context. METHODS: Several iterative steps were undertaken. An international panel of experts reviewed content validity. A 66-item pilot questionnaire was administered in schools. Mokken and Rasch model analysis were applied. Internal consistency was assessed using Cronbach's alpha. Analyses were conducted on associations with teacher and child demographic variables. Feedback was sourced from users. Participants were teachers of 101 children (5-12 years old) with a range of disabilities, including intellectual disability, autism spectrum disorder and learning difficulties. RESULTS: Four participation-related dimensions of the SPQ were confirmed. Rasch person and item reliability were good, and 2-4 strata were confirmed per scale. Internal consistency was good (all scales, Cronbach α > 0.8). Mean administration time was 11.7 min. Mean SPQ scores were independent of teacher characteristics. A significant effect of school support level, eligibility for free school meals and gender was found. Through synthesising analytic results and feedback, a new 46-item tool was obtained. CONCLUSION: The results of this study provide evidence of acceptability, practicality and validity. The SPQ is the first tool developed to assess participation related constructs in schools, and it contains novel information not given by other assessments. The SPQ may be used by practitioners and researchers to understand and improve the participation of children with a range of disabilities in schools.

Visual supports at home and in the community for individuals with autism spectrum disorders: A scoping review.

Visual supports are recommended in autism spectrum disorder clinical guidelines. They can reduce anxiety, increase predictability, support communication and improve participation. They are implemented regularly in schools, but evidence about home visual supports is limited. This article reports results of a scoping literature review, alongside qualitative evaluation with parents and professionals. We report findings from 34 studies, identifying four categories of visual support and heterogeneity in participant characteristics, intervention methods, environments and outcome measures. Qualitative data from questionnaires (n = 101) and focus groups generated key themes about home visual supports, through thematic analysis: (1) Accessibility, (2) Participation-focussed (3) Individualisation, (4) Teaching Methods, (5) Consistency, and (6) Information and Training. We propose consensus with terminology and implications for practice and research.

Community-based participation of children with and without disabilities.

AIM: To describe and compare the socio-demographic characteristics and community-based participation of children with and without disabilities. METHOD: This cross-sectional study reports data on 1073 children with disabilities (663 males, 410 females) and 11 122 children without disabilities (5617 males, 5505 females) aged 10 to 12 years from the fifth sweep of the Millennium Cohort Study. χ2 was used to explore differences between the two groups. Logistic regression models were used to assess the relationships between childhood disability (dependent variable) and socio-demographic characteristics. Logistic regression models were also used to examine the associations between childhood disability (dependent variable) and participation in community-based activities. RESULTS: Children with disabilities were more likely to be male, have psychosocial and behavioural problems, live in single-parent households, and have a parent with a longstanding illness. Patterns of community-based participation were similar between children with and without disabilities. However, the extent to which the two groups participated differed. Children with disabilities participated with lower frequency in unstructured physical activities (adjusted odds ratio [OR] 2.41; 95% confidence interval [CI]: 1.95-2.99), organized physical activities (adjusted OR 2.29; 95% CI: 1.83-2.86), religious gatherings (adjusted OR 2.08; 95% CI: 1.35-3.20), and getting together with friends (adjusted OR 3.31; 95% CI: 2.61-4.20). INTERPRETATION: Socio-demographic characteristics differed between children with and without disabilities. Children with disabilities had greater restriction in participation compared to peers without disabilities. Participation promoting interventions are required to support the participation of children with disabilities in social and physical activities. WHAT THIS PAPER ADDS: Patterns of community-based participation were similar between children with and without disabilities. Children with disabilities had lower frequency of participation in physical activities, religious gatherings, and getting together with friends.

Joint production of research priorities to improve the lives of those with childhood onset conditions that impair learning: the James Lind Alliance Priority Setting Partnership for 'learning difficulties'.

OBJECTIVES: To engage children and young people with conditions that impair learning, their parents/carers and the health, education, social work and third sector professionals to identify and prioritise research questions for learning difficulties. DESIGN: Prospective surveys and consensus meeting guided by methods advocated by the James Lind Alliance. SETTING: Scotland. METHODS: The Priority Setting Partnership came together through discussion and collaboration between the University of Edinburgh, Scottish charity The Salvesen Mindroom Centre and partners in the National Health Service, education services and the third sector. A steering group was established. Charity and professional organisations were recruited. Suggested questions were gathered in an open survey and from research recommendations by the National Institute for Health and Care Excellence and Scottish Intercollegiate Guidelines Network Guidance. Suggested questions and recommendations were summarised into 40 indicative research questions. These indicative questions were verified as uncertainties from research evidence. Respondents each nominated up to 10 questions as research priorities in an interim survey. The 25 highest-ranked questions from the interim survey were prioritised at the final priority setting workshop. PARTICIPANTS: 367 people submitted suggestions (29 individuals affected by learning difficulties, 147 parents/carers and 191 professionals). 361 people participated in the interim prioritisation (41 individuals, 125 parents/carers and 195 professionals). 25 took part in the final workshop (5 young people, 6 parents and 14 professionals). RESULTS: Top three research priorities related to (1) upskilling education professionals, (2) best education and community environment and (3) multidisciplinary practice and working with parents. Top 10 included best early interventions, upskilling health, social and third sector professionals, support for families, identifying early signs and symptoms, effective assessments and strategies against stigma and bullying and to live independent lives. CONCLUSIONS: Results will now be a resource for researchers and funders to understand and resolve learning difficulties and improve the lives of those affected with childhood onset conditions that result in learning difficulties.

Participation of children with disabilities in school: A realist systematic review of psychosocial and environmental factors.

BACKGROUND: In order to make informed decisions about how best to support children and young people with disabilities, effective strategies that facilitate active and meaningful participation in school are required. Clinical factors, diagnosis or impairments somewhat helpful in determining what should be provided in interventions. However, clinical factors alone will not offer a clear view of how to support participation. It is helpful then to look at wider psychosocial and environmental factors. The aim of this review was to synthesise evidence of psychosocial and environmental factors associated with school participation of 4-12 year old children with disabilities to inform the development of participation-fostering interventions. METHODS: A systematic search and synthesis using realist methods was conducted of published research. Papers had to include consideration of psychosocial and/or environment factors for school participation of children with disabilities. The review was completed in accordance with the Realist and Meta-narrative Evidence Syntheses: Evolving Standards (RAMESES) and Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines. Papers were identified via Boolean search of the electronic databases MEDLINE, CINAHL, PhycINFO and ERIC (January 2006-October 2018). Appraisal focussed on contributions in terms of whether the articles are appropriate for the review (relevance) and research quality (rigour). Data were analyzed using content and thematic analysis methods using a realist framework. A narrative synthesis of results was reported. RESULTS AND IMPLICATIONS: We identified 1828 papers in the initial search. Seventy two papers were included in the final synthesis. Synthesis of findings led to three overarching mechanisms representing psychosocial factors for children (1) identity (2) competence and (3) experience of mind and body. Environmental aspects (context) compromised five interrelated areas: (1) structures and organization, (2) peers, (3) adults, (4) space and (5) objects. Our synthesis provides insights on how professionals may organize efforts to improve children's participation. Consideration of these findings will help to proactively deal with suboptimal participation outcomes. Development of theoretically determined assessments and interventions for management of school participation are now required.

Family factors associated with participation of children with disabilities: a systematic review.

AIM: The aim of this review was to synthesize empirical evidence of family factors associated with participation of children with disabilities aged 5 to 12 years to inform the development of family-centred participation-fostering interventions. METHOD: A systematic search was performed for articles published in English between 2001 and 2017 in MEDLINE, PsycINFO, CINAHL, Scopus, and ASSIA following the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines. Quality of evidence was appraised using the Research Triangle Institute Item Bank. Family factors associated with participation were identified and assessed using a multistage 'semi-quantitative' approach. RESULTS: Thirty studies were included in the review. Four non-modifiable 'status' factors consistently associated with participation were parental ethnicity, parental education, family type, and family socio-economic status. Six modifiable 'process' factors with consistent associations with participation were parental mental and physical health functioning, parental self-efficacy beliefs, parental support, parental time, family preferences, and activity orientation. INTERPRETATION: Rehabilitation professionals should direct their focus towards modifiable family factors as primary targets for family-centred interventions. Strategies that can improve families' access to information, counselling, and community support services are likely to support children's participation by empowering families and optimizing their health and well-being. WHAT THIS PAPER ADDS: Non-modifiable 'status' and modifiable 'process' factors are important in participation of children with disabilities. Disadvantaged family circumstances shaped by status factors are associated with reduced participation. Key process factors for intervention are parental mental and physical health and parental self-efficacy beliefs. Other important process factors for intervention are parental support and time, family preferences, and activity orientation.

FACTORES FAMILIARES ASOCIADOS CON LA PARTICIPACIÓN DE NIÑOS CON DISCAPACIDAD: UN ESTUDIO SISTEMÁTICO: OBJETIVO: El objetivo de esta revisión fue sintetizar la evidencia empírica de los factores familiares asociados con la participación de niños con discapacidad entre los 5 y 12 años para informar el desarrollo de intervenciones que fomentan la participación centrada en la familia METODO: Una búsqueda sistemática fue realizada en artículos publicados en ingles entre 2001 y 2017 en MEDLINE, PsycINFO, CINAHL, Scopus, y ASSIA de acuerdo con los items reportados preferentes para guías de Búsqueda Sistemática y Meta-Análisis. La calidad de la evidencia fue evaluada utilizando el Banco de Items del Research Triangle Institute (RTI). Fueron identificados los factores familiares asociados con la participación y evaluados utilizando un enfoque semicuantitativo de varias etapas. RESULTADOS: Fueron incluidos 30 estudios en esta revisión. Cuatro factores no modificables de ¨estado¨ asociados sistemáticamente con la participación fueron la etnia de los padres, el nivel de educación de los padres, el tipo de familia, y el estatus socioeconómico de las familias. Seis factores de ¨proceso ¨modificables con asociaciones consistentes con la participación fueron el funcionamiento de salud física y mental de los padres, creencia de autoeficacia de los padres, soporte parenteral, tiempo de los padres, preferencias familiares, y orientación a la actividad. INTERPRETACION: Los profesionales de la rehabilitación deben dirigir su foco hacia los factores modificables como objetivo primario para las intervenciones centradas en la familia. Estrategias que puedan mejorar el acceso de las familias a la información , asesoramiento, y servicios de apoyo comunitario que apoyen la participación de los niños y empoderar a las familias y optimizar su salud y bienestar.

FATORES FAMILIARES ASSOCIADOS COM PARTICIPAÇÃO EM CRIANÇAS COM INCAPACIDADES: UMA REVISÃO SISTEMÁTICA: OBJETIVO: O objetivo desta revisão foi sintetizar a evidência empírica de fatores familiares associados com participação de crianças com incapacidades de 5 a 12 anos para informar o desenvolvimento de intevenções centradas na família que promovam a participação. MÉTODO: Uma busca sistemática foi realizada por artigos publicados em ingles entre 2001 e 2007 na Medline, PsycINFO, CINAHL, Scopus, e ASSIA seguindo as diretrizes para Itens preferidos a serem reportados em revisões sistemáticas. A qualidade da evidência foi avaliada usando o Banco de Itens Do Institututo do Triângulo das Pesquisas (ITR). Fatores familiares associados à participação foram identificados e avaliados usando uma abordagem semi-quantitativa multi-estágios. RESULTADOS: Trinta estudos foram incluídos na revisão. Quatro fatores com estado "não-modificável" consistentemente associados com participação foram etnia parental, educação parental, tipo de família e situação sócio-econômica da família. Seis fatores de "processo" modificáveis com associações consistentes com participação foram saúde e funcionamento mental e físico dos pais, auto-eficácia parental, apoio parental, tempo parental, preferências familiares e orientacões para atividades. INTERPRETAÇÃO: Profissionais de reabilitação devem direcionar o foco para fatores familiares potencialmente modificáveis como alvos primários para intervenções centradas na família. Estratégias que podem melhorar o acesso da família a informação, aconselhamento e serviços de suporte na comunidade têm probabilidade de apoiar a participação da criança por empoderar famílias e otimizar sua saúde e bem estar.

Child and Adolescent Intellectual Disability Screening Questionnaire to identify children with intellectual disability.

AIM: To evaluate the psychometric properties of the Child and Adolescent Intellectual Disability Screening Questionnaire (CAIDS-Q) in paediatric neurodevelopment clinics. METHOD: Participants were 181 children (aged 6-18y) attending paediatric services in Scotland, divided into three age groups according to previous CAIDS-Q standardization cut-off scores. Fifty-four children (37 males, 17 females; mean age 117mo [SD 29.9mo]) met the criteria for intellectual disability and 127 did not (88 males, 39 females; mean age 120.1mo [SD 32.7mo]). A number of psychometric properties of the CAIDS-Q were evaluated, including test-retest and interrater reliability, convergent validity, sensitivity, specificity, and positive and negative predictive values based on existing cut-off scores. RESULTS: Significant positive relationships were found for all three age groups between CAIDS-Q scores and measures of intellectual and adaptive functioning. Test-retest reliability ranged from 'moderate' to 'almost perfect', whereas interrater reliability ranged from 'fair' to 'almost perfect'. Sensitivity and positive predictive value were 100% for all groups and specificity was between 83% and 94%, depending on age. Negative predictive values ranged from 75% to 91%. INTERPRETATION: The CAIDS-Q appears to show psychometric properties that support its use as a screen for intellectual disability in paediatric neurodevelopmental settings. WHAT THIS PAPER ADDS: The Child and Adolescent Intellectual Disability Screening Questionnaire showed good psychometric properties. It identified all participating children who met the criteria for intellectual disability. Between 83% and 94% of children without intellectual disability were also correctly identified.

CUESTIONARIO DE PESQUISA DE DISCAPACIDAD INTELECTUAL EN NIÑOS Y ADOLESCENTES PARA IDENTIFICAR DISCAPACIDAD INTELECTUAL: OBJETIVO: Evaluar las propiedades psicométricas del Cuestionario de Detección de Discapacidad Intelectual en Niños y Adolescentes (CAIDS-Q, siglas en inglés) en clínicas pediátricas de neurodesarrollo. MÉTODO: Participaron 181 niños (de 6 a 18 años) que asistían a servicios pediátricos en escocia, divididos en tres grupos de edad de acuerdo con los puntajes de corte de estandarización para la CAIDS-Q. Cincuenta y cuatro niños (37 varones, 17 mujeres, edad media 117 meses (DS 29.9 meses) cumplían con los criterios de discapacidad intelectual y 127 no cumplían con los criterios estipulados (88 varones, 39 mujeres, con una edad media de 120,1 meses (DS 32,7 meses). Se evaluaron varias propiedades psicométricas del CAIDS-Q, incluidas la repetibilidad y la confiabilidad entre evaluadores, la validez convergente, la sensibilidad, la especificidad y los valores predictivos positivos y negativos basados en los puntajes de corte preexistentes. RESULTADOS: Se encontraron correlaciones positivas significativas para los tres grupos de edad entre los puntajes CAIDS-Q y las mediciones de funcionamiento intelectual y adaptativo. La confiabilidad test-retest (repetibilidad) fue de 'moderada' a 'casi perfecta', mientras que la confiabilidad entre evaluadores fue de 'buena' a 'casi perfecta'. La sensibilidad y el valor predictivo positivo fueron del 100% para todos los grupos y la especificidad fue del 83% al 94%, según la edad. Los valores predictivos negativos fueron del 75% al ​​91%. INTERPRETACIÓN: El CAIDS-Q parece mostrar propiedades psicométricas que respaldan su uso como instrumento de pesquisa para la discapacidad intelectual en contextos de neurodesarrollo pediátrico.

QUESTIONÁRIO DE RASTREIO DE DEFICIÊNCIA INTELECTUAL DA CRIANÇA E DO ADOLESCENTE PARA IDENTIFICAR CRIANÇAS COM DEFICIÊNCIA INTELECTUAL: OBJETIVO: Avaliar as propriedades psicométricas do Questionário de Rastreio da Deficiência Intelectual da Criança e do Adolescente (CAIDS-Q) em clínicas de neurodesenvolvimento pediátrico. MÉTODO: Os participantes foram 181 crianças (idades 6-18 anos) que frequentam serviços pediátricos na Escócia, divididos em três grupos etários de acordo com pontos de corte da padronização do CAIDS-Q. Cinquenta e quatro crianças (37 do sexo masculino, 17 do sexo feminino; média de idade 117m [DP 29,9m]) atenderam aos critérios para deficiência intelectual e 127 não atenderam (88 do sexo masculino, 39 do sexo feminino; média de idade 120,1m [DP 32,7m]). Um número de propriedades psicométricas do CAIDS-Q foram avaliadas, incluindo confiabilidade teste-reteste e entre examinadores, validade convergente, sensibilidade, especificidade, e valores preditivos positivos e negativos, com base em pontos de corte existentes. RESULTADOS: Relações positivas significativas foram encontradas para todos os três grupos etários entre os escores CAIDS-Q e medidas de funcionamento intelectual e adaptativo. A confiabilidade teste-reteste variou de "moderada" a "quase-perfeita", enquanto a confiabilidade entre examinadores variou de "leve" a "quase perfeita". Os valores de sensibilidade e valores preditivo positivos foram 100% para todos os grupos, e a especificidade variou de 83% a 94%, dependendo da idade. Valores preditivos negativos variaram de 75% a 91%. INTERPRETAÇÃO: O CAIDS-Q parece mostrar propriedades psicométricas que sustentam seu uso para rastrear deficiência intelectual em ambientes de neurodesenvolvimento pediátrico.

Screening for intellectual disability with the Child and Adolescent Intellectual Screening Questionnaire: a modified Delphi approach.

AIM: To develop a consensus framework to evaluate the impact of screening for intellectual disability, using the Child and Adolescent Intellectual Disability Screening Questionnaire (CAIDS-Q) in paediatric neurodevelopment clinics. METHOD: A modified Delphi survey with four phases (literature review; initial development of framework [participants=11 parents, 8 professionals]; qualitative interviews [participants=4 parents, 15 professionals]; questionnaire development [participants=31 parents, 14 professionals] was used to develop the consensus framework. The framework was used to evaluate the impact of screening on six paediatricians and 31 parents of children who had participated in a previous paediatric screening project. RESULTS: Twelve of the original 20 items were retained based on levels of endorsement of 60 per cent or above. Direct benefits of using the CAIDS-Q were: indicating the child's level of functioning, increasing awareness of intellectual disability, helping to identify children with intellectual disability, and identifying potentially vulnerable children. Benefits related to subsequent diagnostic assessment were: promoting greater understanding of the child, identification of support needs, and receipt of support, particularly for the child at school. INTERPRETATION: The use of the CAIDS-Q had a number of direct and indirect benefits for children, families, and services as reported by parents and paediatricians. WHAT THIS PAPER ADDS: A 12-item framework was developed to evaluate the impact of screening for intellectual disability. Direct benefits of the Child and Adolescent Intellectual Disability Screening Questionnaire include increasing awareness and identification of intellectual disability. Indirect benefits included increased identification of support needs and receipt of support.

Implementation of a Practice Development Model to Reduce the Wait for Autism Spectrum Diagnosis in Adults.

This study examined waiting times for diagnostic assessment of Autism Spectrum Disorder in 11 adult services, prior to and following the implementation of a 12 month change program. Methods to support change are reported and a multi-level modelling approach determined the effect of the change program on overall wait times. Results were statistically significant (b = - 0.25, t(136) = - 2.88, p = 0.005). The average time individuals waited for diagnosis across all services reduced from 149.4 days prior to the change program and 119.5 days after it, with an average reduction of 29.9 days overall. This innovative intervention provides a promising framework for service improvement to reduce the wait for diagnostic assessment of ASD in adults across the range of spectrum presentations.

Drooling Reduction Intervention randomised trial (DRI): comparing the efficacy and acceptability of hyoscine patches and glycopyrronium liquid on drooling in children with neurodisability.

OBJECTIVE: Investigate whether hyoscine patch or glycopyrronium liquid is more effective and acceptable to treat drooling in children with neurodisability. DESIGN: Multicentre, single-blind, randomised controlled trial. SETTING: Recruitment through neurodisability teams; treatment by parents. PARTICIPANTS: Ninety children with neurodisability who had never received medication for drooling (55 boys, 35 girls; median age 4 years). EXCLUSION CRITERIA: medication contraindicated; in a trial that could affect drooling or management. INTERVENTION: Children were randomised to receive a hyoscine skin patch or glycopyrronium liquid. Dose was increased over 4 weeks to achieve optimum symptom control with minimal side-effects; steady dose then continued to 12 weeks. PRIMARY AND SECONDARY OUTCOMES: Primary outcome: Drooling Impact Scale (DIS) score at week-4. SECONDARY OUTCOMES: change in DIS scores over 12 weeks, Drooling Severity and Frequency Scale and Treatment Satisfaction Questionnaire for Medication; adverse events; children's perception about treatment. RESULTS: Both medications yielded clinically and statistically significant reductions in mean DIS at week-4 (25.0 (SD 22.2) for hyoscine and 26.6 (SD 16) for glycopyrronium). There was no significant difference in change in DIS scores between treatment groups. By week-12, 26/47 (55%) children starting treatment were receiving hyoscine compared with 31/38 (82%) on glycopyrronium. There was a 42% increased chance of being on treatment at week-12 for children randomised to glycopyrronium relative to hyoscine (1.42, 95% CI 1.04 to 1.95). CONCLUSIONS: Hyoscine and glycopyrronium are clinically effective in treating drooling in children with neurodisability. Hyoscine produced more problematic side effects leading to a greater chance of treatment cessation. TRIAL REGISTRATION NUMBERS: ISRCTN 75287237; EUDRACT: 2013-000863-94; Medicines and Healthcare Products Regulatory Agency: 17136/0264/001-0003.

Improving Efficiency and Quality of the Children's ASD Diagnostic Pathway: Lessons Learned from Practice.

The 'autism diagnosis crisis' and long waiting times for assessment are as yet unresolved, leading to undue stress and limiting access to effective support. There is therefore a significant need for evidence to support practitioners in the development of efficient services, delivering acceptable waiting times and effectively meeting guideline standards. This study reports statistically significant reductions in waiting times for autism diagnostic assessment following a children's health service improvement programme. The average wait between referral and first appointment reduced from 14.2 to 10.4 weeks (t(21) = 4.3, p < 0.05) and between referral and diagnosis shared, reduced from 270 to 122.5 days, (t(20) = 5.5, p < 0.05). The proportion of girls identified increased from 5.6 to 2.7:1. Methods reported include: local improvement action planning; evidence based pathways; systematic clinical data gathering and a training plan. This is a highly significant finding for many health services wrestling with the challenges of demand and capacity for autism diagnosis and assessment.

Multiple Measures of Fixation on Social Content in Infancy: Evidence for a Single Social Cognitive Construct?

The preference of infants to fixate on social information in a stimulus is well known. We examine how this preference manifests across a series of free-viewing tasks using different stimulus types. Participants were thirty typically developing infants. We measured eye movements when viewing isolated faces, faces alongside objects in a grid, and faces naturally presented in photographed scenes. In each task, infants fixated social content for longer than nonsocial content. Social preference scores representing distribution of fixation to social versus general image content were highly correlated and thus combined into a single composite measure, which was independent of demographic and behavioral measures. We infer that multiple eye-tracking tasks can be used to generate a composite measure of social preference in infancy. This approach may prove useful in the early characterization of developmental disabilities.

Preterm birth is associated with atypical social orienting in infancy detected using eye tracking.

BACKGROUND: Preterm birth is closely associated with neurocognitive impairment in childhood including increased risk for social difficulties. Eye tracking objectively assesses eye-gaze behaviour in response to visual stimuli, which permits inference about underlying cognitive processes. We tested the hypothesis that social orienting in infancy is altered by preterm birth. METHODS: Fifty preterm infants with mean (range) gestational age (GA) at birth of 29(+1) (23(+2) -33(+0) ) weeks and 50 term infants with mean (range) GA at birth 40(+2) (37(+0) -42(+3) ) weeks underwent eye tracking at median age of 7 months. Infants were presented with three categories of social stimuli of increasing complexity. Time to first fixate (TFF) and looking time (LT) on areas of interest (AoIs) were recorded using remote eye tracking. RESULTS: Preterm infants consistently fixated for a shorter time on social content than term infants across all three tasks: face-scanning (fixation to eyes minus mouth 0.61s vs. 1.47s, p = .013); face pop-out task (fixation to face 0.8s vs. 1.34s, p = .023); and social preferential looking (1.16s vs. 1.5s p = .02). Time given to AoIs containing social content as a proportion of LT at the whole stimulus was lower in preterm infants across all three tasks. These results were not explained by differences in overall looking time between the groups. CONCLUSIONS: Eye tracking provides early evidence of atypical cognition after preterm birth, and may be a useful tool for stratifying infants at risk of impairment for early interventions designed to improve outcome.

Gender ratio in a clinical population sample, age of diagnosis and duration of assessment in children and adults with autism spectrum disorder.

This article reports on gender ratio, age of diagnosis and the duration of assessment procedures in autism spectrum disorder diagnosis in a national study which included all types of clinical services for children and adults. Findings are reported from a retrospective case note analysis undertaken with a representative sample of 150 Scottish children and adults recently diagnosed with autism spectrum disorder. The study reports key findings that the gender ratio in this consecutively referred cohort is lower than anticipated in some age groups and reduces with increasing age. The gender ratio in children, together with the significant difference in the mean age of referral and diagnosis for girls compared to boys, adds evidence of delayed recognition of autism spectrum disorder in younger girls. There was no significant difference in duration of assessment for males and females suggesting that delays in diagnosis of females occur prior to referral for assessment. Implications for practice and research are considered.

Management of developmental speech and language disorders: Part 1.

The identification of developmental problems in a child's acquisition of speech, language and/or communication is a core activity in child surveillance. These are common difficulties with up to 15% of toddlers being 'late talkers' and 7% of children entering school with persisting impairments of their language development. These delays can confer disadvantages in the long term, adversely affecting language, cognition, academic attainment, behaviour and mental health. All children presenting with significant speech and language delay should be investigated with a comprehensive hearing assessment and be considered for speech and language therapy assessment. Socioeconomic adversity correlates with delayed language development. Clinical assessment should confirm that the presentation is definitely not acquired (see part 2) and will also guide whether the difficulty is primary, in which there are often familial patterns, or secondary, from a very wide range of aetiologies. Symptoms may be salient, such as the regression of communication in <3-year-olds which 'flags up' autism spectrum disorder. Further investigation will be informed from this clinical assessment, for example, genetic investigation for sex aneuploidies in enduring primary difficulties. Management of the speech and language difficulty itself is the realm of the speech and language therapist, who has an ever-increasing evidence-based choice of interventions. This should take place within a multidisciplinary team, particularly for children with more severe conditions who may benefit from individualised parental and educational supports.

Management of developmental speech and language disorders. Part 2: acquired conditions.

Many children who present with these acquired impairments of communication have a clear preceding event such as an acquired brain injury from a road traffic accident. Children often respond differently in this situation to adult presentations. They may have a period of mutism when the prognosis might look poor and yet they subsequently make rapid progress and recover speech. They have greater potential for neural plasticity and language recovery, although they often have persisting difficulties in oral and written language. Alternatively, there may be a presentation with a paroxysmal event such as a seizure or a period of depressed consciousness, and the unusual behaviour that may accompany dysphasia and dysarthria may be misinterpreted in the child, whereas for the adult with the more common 'stroke-like' presentation, it would be immediately considered. Rarely the aphasia/dysphasia may itself be the paroxysmal event where actually recognising that the child's disrupted communication is the basis of any observed behaviours can be the greater challenge.

A trial of an iPad™ intervention targeting social communication skills in children with autism.

This study evaluated a technology-based early intervention for social communication skills in pre-schoolers in a randomised controlled trial. Participants were 54 children aged under 6 years with a diagnosis of autism, assigned to either intervention or control conditions. The app engaged children, who played consistently, regardless of developmental level, and was rated highly by parents. There were no significant group differences in parent-report measures post-intervention, nor in a measure of parent-child play at follow-up. Therefore, this intervention did not have an observable impact on real-world social communication skills and caution is recommended about the potential usefulness of iPad(™) apps for amelioration of difficulties in interaction. However, positive attitudes among participants, lack of harms and the potential of apps to deliver therapeutic content at low economic cost suggest this approach is worth pursuing further, perhaps targeting other skill domains.