Empirically-Derived Effect Size Distributions of Interventions for Young Children on the Autism Spectrum.

OBJECTIVE: The purpose of this study is to present a set of empirically derived effect size distributions to provide field-based benchmarks for interpreting the observed effects of interventions for young children on the autism spectrum, and for planning future studies. METHOD: We generated effect size distributions and reported quartile values for each by outcome domain, and by boundedness, proximity, and assessment approach using 1552 effect sizes from 144 early childhood autism intervention studies gathered for a previously published meta-analysis. RESULTS: Quartile values represent considerable heterogeneity in effect size distributions across outcome domains, as well as variability as a function of outcome boundedness, proximity, and assessment approach. CONCLUSIONS: Our results serve as field- and outcome-specific benchmarks (e.g., contextual guides for small, medium, and large effects) that will help autism intervention researchers easily incorporate information from relevant prior empirical literature when conducting power analyses to plan for future studies. Benchmarks will also assist researchers seeking to interpret the magnitude of observed effects in clinical trials relative to the broader distribution of intervention effects on similar outcomes. Nuanced discussions that contextualize study findings in light of relevant empirical benchmarks will better assist practitioners in understanding the magnitude and scope of demonstrated change relative to studies with similar outcomes and selecting interventions for clinical practice. We discuss the limitations of these data, our analyses, as well as directions for future work.

Characteristics of children on the autism spectrum who benefit the most from receiving intervention in inclusive versus specialised early childhood education settings.

This study examined the factors associated with social-communicative outcomes for children on the autism spectrum receiving early intervention in inclusive versus specialised early childhood education programmes. Fifty-eight preschool-aged children randomly assigned to receive the Group-Early Start Denver Model (G-ESDM) in either inclusive or specialised (i.e., autism-specific) classrooms across one calendar year showed similar outcomes at group mean-level across measures of communication and social behaviour. We examined factors moderating outcomes across settings. Novel moderation analyses revealed that higher baseline social interest and nonverbal cognitive skills were associated with increased social communication gains for children in the inclusive classrooms, but not for those in specialised settings. Children who spend more time paying attention to people and have higher cognitive skills might benefit from receiving early intervention in inclusive settings, whilst these factors might be less relevant for children educated in specialised settings.

The impact of using digitally-mediated social stories on the perceived competence and attitudes of parents and practitioners supporting children with autism.

A Social Story (SS) is a highly acceptable and widely used intervention by the autism community. Yet, inconsistent implementation of the intervention is reported to be one of the causes of variability in terms of outcome research, particularly in a naturalistic context. This study aimed to (1) investigate whether digitally-mediated social stories (SSs) can improve competence in developing and delivering a SS and thus contribute towards improved implementation, and (2) investigate the impact of the digitally-mediated SS on attitudes towards the SS intervention. Ninety-three participants took an initial pre-engagement survey. Forty-eight of these participants also complete a post-engagement survey. A pre-post design was utilised with the participants who completed both surveys. These 48 participants were invited to develop a digitally-mediated SS with the aim of exploring how digitally-mediated SSs impacted perceived competence and attitudes. Post-engagement data was collected two weeks after the pre-engagement data. Outcomes of this study indicate that both perceived competence and attitudes improved after engaging with digitally-mediated SSs. It is concluded that digitally-mediated SS not only impacted the integrity of how the intervention was delivered but also the beliefs in the participants' capabilities to develop and deliver a SS. Digitally-mediated SS, thus, has the potential to effectively support development and delivery whilst also addressing challenges related to intervention implementation in a naturalistic context.

Digitally-Mediated Social Stories Support Children on the Autism Spectrum Adapting to a Change in a 'Real-World' Context.

Social Stories™ (SS) is a widely used intervention for children on the autism spectrum. A preliminary survey of 103 practitioners highlighted that SS are often used to support adapting to a change. This study investigated the use of digitally-mediated SS to support ten children on the autism spectrum attending a school summer camp. Teacher perceptions of anxiety, understanding and closeness to the goal of the SS were assessed before and after the intervention (prior to the event). The pre- post-intervention comparisons highlighted significant improvements in child understanding, anxiety, and closeness to goal with medium-large effect sizes. The child's understanding and closeness to SS goal post-intervention related to their difficulties with the SS goal and their anxiety during the event.

Pervasive refusal syndrome: systematic review of case reports.

Pervasive refusal syndrome (PRS) is a complex condition that affects young people leading to social withdrawal, inability or refusal to eat, drink, mobilise or speak. The affected individual regresses and is unable to self-care and quite characteristically will resist rehabilitation, worsen with praise or remain entirely passive. This systematic review was aimed at describing clinical features of PRS, current interventions and to summarise some of the nosological aspects of the condition. Without language restriction, an electronic search was conducted in Embase, PsychInfo, Medline, Cochrane library, and PubMed databases yielding 29 articles with a total of 79 cases. We performed a risk of assessment bias using an adapted Newcastle-Ottawa Scale and adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. 124 articles were identified, of which 29 were included and these yielded 79 cases. Seventy-six percent of the studies had a low rate of risk of assessment bias (good quality). Our results show that PRS overlaps with several conditions, mainly affects young females aged 7-15 years and has a recovery rate of 78% if diagnosed and treated early but the duration of inpatient treatment may last up to 9.44 months (8.82 SD). The patients had multiple inter-dependent risks. The major predisposing factors included vulnerable premorbid personality and pre-existing mental disorder. Precipitating factors were stressors such as infection and traumatic experiences. Enmeshed parent-child relationship served as a maintaining factor. The themes of treatment approach are essentially rehabilitative: (1) working collaboratively with patient and family, (2) having access to multidisciplinary team, and (3) peer/group supervision. This study has systematically evaluated a large sample of patients with PRS to ascertain its clinical features and the core elements of its treatment. Its key treatment approach is a multi-modal rehabilitative strategy that is compassionate, transparent and inclusive.

Pervasive refusal syndrome in child asylum seekers on Nauru.

OBJECTIVES: Between 2013 and 2019, an estimated 200 children seeking asylum in Australia were detained on the island of Nauru. In 2018, 15 of these children developed the rare and life-threatening pervasive refusal syndrome (PRS). This paper describes the PRS case cluster, the complexities faced by clinicians managing these cases, and the lessons that can be learned from this outbreak. CONCLUSIONS: The emergence of PRS on Nauru highlighted the risks of long-term detention of children in settings that are unable to meet their physical and psycho-social needs. The case cluster also underscored (a) the difficulties faced by doctors working in conditions where their medical and legal obligations may be in direct conflict, and (b) the role of clinicians in patient advocacy.

Evaluation of Autism Spectrum Disorder in Early Childhood According to the DSM-5 Diagnostic Criteria. / DSM-5 Tani Ölçütlerine Göre Erken Çocukluk Döneminde Otizm Spektrum Bozuklugunun Degerlendirilmesi.

OBJECTIVE: The aim of this study is to investigate, the DSM5 criteria of, Autism Spectrum Disorder (ASD) and Social Communication Disorder (SCD) in young children previously diagnosed with Pervasive Developmental Disorder (PDD) on the DSM-IV-TR, and to evaluate the effects of the symptom severity, emotional-behavioral problems, and age and gender differences on the diagnoses. METHOD: The study included 80 children between the ages of 18-72 months, who were diagnosed with PDD on the DSM-IV-TR criteria. The severity of autistic symptoms was measured by the Autism Behavior Checklist (ABC) and the Childhood Autism Rating Scale (CARS). The presence of behavioral and emotional problems were evaluated by the Aberrant Behavior Checklist (AbBC). RESULTS: Among the patients previously diagnosed with PDD, 9 (11.8%) did not meet the DSM-5 ASD criteria; 6 (7.9%) met the SCD criteria while 3 could not be assessed on the SCD criteria due to their small age and therefore not included in either diagnostic classes. The mean CARS, ABC and AbBC scores of the patients who met the ASD criteria, as compared to those who did not, were significantly higher. The two groups did not differ significantly with respect to the gender distribution and mean age. CONCLUSION: The patients who had more and severe autistic symptoms had a higher likelihood of getting an ASD diagnosis based on the DSM-5 criteria. The diagnosis of the patients with subthreshold ASD symptoms may be missed on the basis of the new diagnostic criteria.

Prevalence and Incidence of Developmental Disorders in Korea: A Nationwide Population-Based Study.

Prevalence of developmental disorders (DDs) has been increasing worldwide. This study identifies a trend in their prevalence and incidence, using nationwide population-based data to analyze the characteristics of children with DDs in Korea. The prevalence of DDs steadily increased by more than four times (from 0.6 to 2.5) from 2003 to 2017. Boys had higher incidence than girls throughout the period, during which the gap increased from 19.1 to 31.4%. The incidence also increased by the size of city and medical insurance quartile. The ratio of autism spectrum disorder, developmental delay and language disorders among the total incident cases of DDs increased by 13.7%, 817.6%, and 30.7%, respectively, indicating their contribution to the trend of increasing prevalence.

Intolerance of uncertainty and anxiety as explanatory frameworks for extreme demand avoidance in children and adolescents.

BACKGROUND: Pathological demand avoidance (PDA) is a proposed subtype of autism spectrum disorder (ASD), characterised by extreme avoidance of demands. Demand avoidant behaviour has been proposed to be driven by an anxious need to be in control, although has never been explicitly studied. Emerging evidence suggests intolerance of uncertainty (IU) and anxiety may explain the behaviours seen in ASD. We propose these concepts may be useful starting points for furthering understanding of PDA. METHODS: In Study 1, quantitative methods examined the relationship between PDA, IU and anxiety using data collected in an online survey (N = 214). The sample included cases with clinically diagnosed PDA (n = 69) and those with no clinical diagnosis but parent-identified features of PDA (n = 151). 'Children with a diagnosis of PDA scored significantly higher on the IUS-P (t(212) = 2.45, p < .05) compared to those without a diagnosis of PDA. PDA diagnosis did not impact on scores on any other measure.' In Study 2, a selection of Study 1 participants (n = 11) were followed up with a telephone interview to gain descriptive data relating to PDA and its association with IU and anxiety. RESULTS: Regression analyses indicate that demand avoidant behaviour can be conceptualised in part as a possible attempt to increase certainty and predictability to alleviate increasing anxiety. Children and young people with PDA employed varying strategies to manage IU depending on the level of demand presented and degree of anxiety generated. These strategies can be represented by different features of the behaviour profile seen in PDA (control behaviour, withdrawal to fantasy, and meltdown). These behavioural features of PDA showed differential relationships with IU and anxiety, although all were predicted by IU, only meltdown demonstrated a mediation effect by anxiety. CONCLUSIONS: This study represents one of the first attempts to conceptualise and understand the behavioural features of the PDA profile in children and young people. It builds upon emerging evidence from the ASD literature that IU is a relevant construct for conceptualising demand avoidant behaviour in children who show PDA behaviour. This has potential clinical implications for the assessment and management of PDA in children and young people.

Communicating Without Words: School-Based RCT Social Intervention in Minimally Verbal Peer Dyads with ASD.

Despite their social withdrawal, school-age children with autism spectrum disorder who are minimally verbal (MVASD; i.e., use a limited repertoire of communicative spoken words) have received few interventions supporting peer engagement. This study examined efficacy of a novel ecological randomized controlled trial-school-based peer social intervention-designed to increase social engagement (via available communication channels) in school-age peer dyads with MVASD. Fifty-four children with MVASD (8-16 years) in 9 Israeli special education schools were randomly assigned to conversation intervention, collaboration intervention, or waitlisted treatment-as-usual (control) group (n = 18 per group). Manualized conversation and collaboration interventions each included 60 lessons (15 weeks × 4), implemented by teachers at school and supervised by researchers. Pretest-posttest improvement in spontaneous peer interaction was measured via 3 data sources/methods: teacher-reported social behavior (Vineland: Socialization domain) and direct observations of children's spontaneous free play (Modified-Classroom Observation Schedule to Measure Intentional Communication) and free conversation (Social Conversation Scale). Allocation group was masked from reporters/coders. As secondary outcomes, children's progress was measured in executive functions (BRIEF Inventory), and communication (Vineland). Significant pre-post improvement emerged for both intervention groups' spontaneous free conversation and for the collaboration group's spontaneous free play. Teacher reports, although mixed, indicated that the conversation group's socialization skills improved, but communication did not. Children in the conversation group also improved their metacognitive executive skills (e.g., planning, monitoring, organization). Strengthening this high-risk school-age population's ability to interact more spontaneously with peers through conversation and collaboration intervention holds promise for reducing social withdrawal in MVASD.

Are touch screen technologies more effective than traditional educational methods in children with autism spectrum disorders? A pilot study.

Applied Computer technologies can address the needs of individuals with autism spectrum disorders (ASD). Data on the efficacy of assistive technology in ASD is limited, and its effectiveness in supporting and facilitating skill acquisition in this specific population must be still demonstrated. 63 Italian ASD subjects underwent learning activities administered by cardboards or a touch screen support. The support preference was evaluated in a choice trial, and quantitative analysis was performed on items regarding communication and challenging behaviours. Touch devices are attractive especially for males without intellectual disability and a lower communication and cooperation behaviours with the use of touch screen compared with paper support was shown depending on activities. Overall, our data do not confirm the hypothesis that touch screen presentation improves activity completion and behavioural performance for each individual with ASD. Data discourage an indiscriminate use of these devices and suggest analysing with more attention the core ingredients that should shape digital devices when used for people on ASD.

Diagnostic validity of the MINI-KID disorder classifications in specialized child and adolescent psychiatric outpatient clinics in Sweden.

BACKGROUND: Missing diagnostic information often results poor accuracy of the clinical diagnostic decision process. The Mini International Neuropsychiatric Interview for Children and Adolescents (MINI-KID) is a short standardized diagnostic interview and covers a rather broad range of diagnoses applicable to children and adolescents. MINI-KID disorder classifications have shown test-retest reliability and validity comparable to other standardized diagnostic interviews and is claimed to be a useful tool for diagnostic screening in Child and Adolescent Psychiatric care. The concordance between the Swedish language version of the MINI-KID Interview and LEAD (Longitudinal, Expert, All Data) research diagnoses was studied in secondary child and adolescent psychiatric outpatient care. METHODS: MINI-KID interviews were performed for 101 patients, boys n = 50, girls n = 51, aged 4 to 18 years. The duration of the interview was on average 46 min, the child/adolescent participating together with the parent(s) in most cases. The seven most prevalent diagnoses were included in the analyses. RESULTS: The average overall percent agreement (OPA) between MINI-KID and LEAD was 79.5%, the average percent positive agreement (PPA) 35.4 and the average percent negative agreement (NPA) 92.7. OPA was highest for Obsessive-Compulsive Disorder (OCD) (0.89), Tic disorders (0.88) and Pervasive developmental disorders (0.81). There were similar results in diagnostic agreement comparing the two versions: the standard MINI-KID and MINI-KID for parents. The specific screening questions in MINI-KID resulted in additional preliminary diagnoses compared with the regular initial clinical assessment. CONCLUSIONS: Overall, there was an acceptable agreement between MINI-KID disorder classifications and research diagnoses according to LEAD. The standardized interview MINI-KID could be considered as a tool with the possibility to give valuable information in the diagnostic process in child and adolescent care which is similar to the setting in the present study.

Mental Health Diagnoses, Symptoms, and Service Utilization in US Youth with Perinatal HIV Infection or HIV Exposure.

Youth perinatally HIV infected (PHIV) or HIV exposed, but uninfected (PHEU), are aging into adolescence and adulthood with multiple complex risk factors for mental health (MH) problems and poor MH treatment utilization. Our aims were to estimate prevalence of MH diagnoses, clinically significant symptoms, and MH treatment utilization among youth with PHIV and among PHEU youth, 10-22 years old. We also aimed to identify correlates of diagnoses and treatment utilization. Analyses of data from standardized interviews, behavioral assessments, and chart review of 551 youth revealed that 36% had a previous or current MH diagnosis, with no significant HIV status group differences. Prevalence of clinically significant symptoms was 15% for both groups, of whom a third had no diagnosis, and half were not receiving treatment. Among youth with a current MH diagnosis, those with PHIV had greater utilization of services than PHEU youth (67% vs. 51%; p = 0.04). Factors associated with MH diagnoses and/or treatment utilization included caregiver characteristics, age and sex of child, HIV status, and stressful life events. Prevalence of MH diagnoses was higher than in the general population, but lower than in similar perinatally HIV-exposed cohorts, with some unmet service needs, particularly in PHEU youth. Family characteristics warrant careful consideration in early diagnosis and treatment of MH problems among youth affected by HIV.

Development and Psychometric Evaluation of the Hansen Research Services Matrix Adaptive Test: A Measure of Nonverbal IQ.

Assessment of individuals on the autism spectrum often includes a measure of nonverbal IQ. One such measure is the Raven's Standard Progressive Matrices (RSPM). For large research studies with participants distributed nationally it is desirable for assessments to be available online. Because time is a premium, it is ideal that the measure produces accurate scores quickly. The Hansen Research Services Matrix Adaptive Test (HRS-MAT) addresses these needs and with similar psychometric properties of the RSPM. Scores based on the HRS-MAT correlated at r = .81 with those of the RSPM. In adult-child pairs, HRS-MAT scores correlated at approximately r = .50. Details from respondents in a national sample and psychometric properties including reliability and validity are discussed.

Beyond diagnosis: the relevance of social interactions for participation in inclusive preschool settings.

Purpose: This study aims to explore the role of three specific factors within the child-environment interaction process - engagement, independence and social interactions - in influencing development and learning of children with disabilities in inclusive preschool settings. The main question is whether children can be categorised in homogenous groups based on engagement, independence and social interactions (proximal variables within a biopsychosocial framework of human development). The study also examined whether children with the same diagnosis would group together or separately, when trying to identify clusters of engagement, independence and social interactions, and additionally whether such clusters vary as a function of individual child characteristics, and/or as a function of structural and process characteristics of preschool environment. Methods: Data was taken from an intervention study conducted in mainstream preschools in Portugal. A person-centered cluster analysis was conducted to explore group membership of children with various diagnoses, based on their engagement, independence and social interaction profiles. Results: Results show that children clustered based on similarity of engagement, independence and social interaction patterns, rather than on diagnosis. Besides, it was found that quality of peer interaction was the only predictor of cluster membership. Conclusion: These findings support the argument that participation profiles may be more informative for intervention purposes than diagnostic categories, and that preschool process quality, namely peer interaction, is crucial for children's participation.

Pathological Demand Avoidance: symptoms but not a syndrome.

Pathological (or extreme) demand avoidance is a term sometimes applied to complex behaviours in children within-or beyond-autism spectrum disorder. The use of pathological demand avoidance as a diagnosis has, at times, led to altered referral practice and misunderstandings between professionals and the families of patients. In our Viewpoint, we reviewed the current literature and conclude that the evidence does not support the validity of pathological demand avoidance as an independent syndrome. Nevertheless, the use of the term highlights an important known range of co-occurring difficulties for many children with autism spectrum disorder that can substantially affect families. We explore how these difficulties can best be understood through understanding of social, sensory, and cognitive sensitivities in autism spectrum disorder, identification of frequently occurring comorbid conditions, and assessment of how these problems interact within the child's social environment. Such understanding should then inform individualised management strategies for children and families, and in social settings, such as education. It is crucial that a shared understanding is achieved between professionals and families in this area.

The Family Life Impairment Scale: Factor Structure and Clinical Utility with Young Children.

Although it is well-established that young children experience significant psychopathology, diagnostic decisions continue to be challenging, in part due to the way impairment is understood, defined, and measured. Most existing clinical tools assess impairment in an individualized manner, whereas for many young children, impairment is more accurately conceptualized as a family-oriented, multidimensional construct, impacting various parental and family activities. Two studies were completed using the Family Life Impairment Scale (FLIS), a multidimensional parent-report measure of family and associated impairment designed for young children. In Study 1, factor analysis was used in a large (n = 945) representative sample (23-48 months of age). FLIS associations with measures of parent and child well-being were explored to investigate convergent validity. Study 2 was completed in a sample (n = 174) of young children (18-33 months of age) diagnosed with autism spectrum disorders to explore factorial consistency in a clinical sample. Study 1 yielded evidence of a four-factor solution, including parent impairment (affecting parental well-being), family impairment (affecting family activities and routines), childcare impairment (affecting challenges with childcare), and positive growth (parental learning and growth associated with the child's problem). Evidence of convergent validity was also found, as factors were differentially associated with established measures of child symptoms and parent stress. Factor structure was supported in the clinical sample. Results support both the factorial structure and clinical utility of the FLIS for use across clinical and nonclinical populations of young children.

The Effects of Structured Physical Activity Program on Social Interaction and Communication for Children with Autism.

The purpose of this study was to investigate the effects of structured physical activity program on social interaction and communication of children with autism spectrum disorder (ASD). Fifty children with ASD from a special school were randomly divided into experimental and control groups. 25 children with ASD were placed in the experimental group, and the other 25 children as the control group participated in regular physical activity. A total of forty-one participants completed the study. A 12-week structured physical activity program was implemented with a total of 24 exercise sessions targeting social interaction and communication of children with ASD, and a quasi-experimental design was used for this study. Data were collected using quantitative and qualitative instruments. SSIS and ABLLS-R results showed that an overall improvement in social skills and social interaction for the experimental group across interim and posttests, F = 8.425, p = 0.001 (p < 0.005), and significant improvements appeared in communication, cooperation, social interaction, and self-control subdomains (p < 0.005). Conversely, no statistically significant differences were found in the control group (p > 0.005). The study concluded that the special structured physical activity program positively influenced social interaction and communication skills of children with ASD, especially in social skills, communication, prompt response, and frequency of expression.

Autosomal dominant mannose-binding lectin deficiency is associated with worse neurodevelopmental outcomes after cardiac surgery in infants.

OBJECTIVES: The MBL2 gene is the major genetic determinant of mannose-binding lectin (MBL)-an acute phase reactant. Low MBL levels have been associated with adverse outcomes in preterm infants. The MBL2Gly54Asp missense variant causes autosomal dominant MBL deficiency. We tested the hypothesis that MBL2Gly54Asp is associated with worse neurodevelopmental outcomes after cardiac surgery in neonates. METHODS: This is an analysis of a previously described cohort of patients with nonsyndromic congenital heart disease who underwent cardiac surgery with cardiopulmonary bypass before age 6 months (n = 295). Four-year neurodevelopment was assessed in 3 domains: Full-Scale Intellectual Quotient, the Visual Motor Integration development test, and the Child Behavior Checklist to assess behavior problems. The Child Behavior Checklist measured total behavior problems, pervasive developmental problems, and internalizing/externalizing problems. A multivariable linear regression model, adjusting for confounders, was fit. RESULTS: MBL2Gly54Asp was associated with a significantly increased covariate-adjusted pervasive developmental problem score (ß = 3.98; P = .0025). Sensitivity analyses of the interaction between age at first surgery and MBL genotype suggested effect modification for the patients with MBL2Gly54Asp (Pinteraction = .039), with the poorest neurodevelopment outcomes occurring in children who had surgery earlier in life. CONCLUSIONS: We report the novel finding that carriers of MBL2Gly54Asp causing autosomal dominant MBL deficiency have increased childhood pervasive developmental problems after cardiac surgery, independent of other covariates. Sensitivity analyses suggest that this effect may be larger in children who underwent surgery at earlier ages. These data support the role of nonsyndromic genetic variation in determining postsurgical neurodevelopment-related outcomes in children with congenital heart disease.

Virtual Environment for Social Information Processing: Assessment of Children with and without Autism Spectrum Disorders.

Social information processing (SIP) skills are critical for developing and maintaining peer relationships. Building on existing assessment techniques, Virtual Environment for SIP (VESIPTM ), a simulation-based assessment that immerses children in social decision-making scenarios, was developed. This study presents preliminary evidence of VESIP's usefulness for measuring SIP skills in children with and without autism spectrum disorders (ASD). Twenty-one children with ASD and 29 control children participated. It was hypothesized that (a) children (8-12 years old), with and without ASD, would understand and interact effectively with VESIP; (b) VESIP scores would be reliable in both populations; and (c) children with ASD would score lower on SIP domains than typically developing peers. Results supported these hypotheses. Finally, response bias was also evaluated, showing that children with ASD have different problem-solving strategies than their peers. VESIP has great potential as a scalable assessment of SIP strengths and challenges in children with and without ASD. Autism Res 2018, 11: 305-317. © 2017 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Children with autism spectrum disorders (ASDs) often struggle interpreting and responding to social situations. The present study suggests that an animated, simulation-based assessment approach is an effective way to measure how children with or without ASDs problem-solve challenging social situations. VESIP is an easy-to-use assessment tool that can help practitioners understand a child's particular strengths and weaknesses.