Autism

Empowering families of children with autism spectrum disorder through education and training is best practice. A wide range of Parent Education and Training programmes are delivered around the globe, but there is limited knowledge about the characteristics of these programmes, or about the research methods and outcomes used to evaluate them, particularly in countries outside the United States. We, therefore, performed a scoping review of all peer-reviewed Parent Education and Training publications outside the United States. A search was conducted between March and May 2017. Four reviewers extracted data and performed a mixed-methods quality appraisal of publications. Thirty-seven publications representing 32 unique programmes were identified. Publications described a highly diverse range of Parent Education and Training programmes across 20 countries and all continents except South America. The majority were group-based, but varied significantly in goals, modalities and duration. The majority of studies (86.4%) reported positive outcomes in relation to the core study objectives and only two studies reported some negative findings. Quality appraisal rated only 27% of studies to have met all the methodological quality criteria. Implementation factors such as manualisation, fidelity and cost were commented on infrequently. In spite of the clear need for Parent Education and Training programmes, our findings show that the research evidence-base in autism spectrum disorder outside the United States is relatively small, non-representative and in need of methodological quality improvements.

Parents of children with autism spectrum disorder appear to experience high levels of psychological distress, yet little is known about the prevalence of psychological disorders in this population. The aim of this systematic review and meta-analysis was to estimate the proportion of these parents who experience clinically significant psychopathology. Articles reporting proportions of psychological disorders in a sample of parents of children with autism spectrum disorder were located. The initial search returned 25,988 articles. Thirty-one studies with a total sample of 9208 parents were included in the final review. The median meta-analytic proportions were 31% (95% confidence interval = [24%, 38%]) for depressive disorders, 33% (95% confidence interval = [20%, 48%]) for anxiety disorders, 10% (95% confidence interval = [1%, 41%]) for obsessive-compulsive disorder, 4% (95% confidence interval = [0%, 22%]) for personality disorders, 2% (95% confidence interval = [1%, 4%]) for alcohol and substance use disorders and 1% (95% confidence interval = [0%, 5%]) for schizophrenia spectrum disorders. Significant heterogeneity was detected in these categories. Further research is needed to gain more insight into variables that may moderate parental psychopathology. This review and meta-analysis is the first to provide prevalence estimates of psychological disorders in parents of children with autism spectrum disorder.

This prospective study examined the developmental changes over time of adolescents diagnosed in toddlerhood with autism spectrum disorder and searched for child characteristics at toddlerhood that predict outcome at adolescence. The study included 65 participants who were divided into low cognitive (developmental quotient < 85; N = 41) and high cognitive (developmental quotient ⩾ 85; N = 21) groups in adolescence. Participants underwent a comprehensive assessment of cognitive ability, adaptive skills, and autism severity. Significant differences in the current clinical phenotypes and in developmental changes over time were found between the two cognitive groups. At baseline, the high cognitive group had significantly less severe social communication deficits. Only the high cognitive group showed a decrease in social communication deficits over time. Although the two groups did not differ in their adaptive skills at the time of diagnosis, the high cognitive group had better adaptive skills at adolescence. Better adaptive communication skills in toddlerhood were associated with better outcome at adolescence in cognitive ability, adaptive skills, and fewer autism symptoms. Less impaired baseline social affect and better cognitive ability predicted higher cognitive level and adaptive skills at adolescence. Cognitive potential of individuals with autism spectrum disorder plays an important role in long-term outcome and comprehensive evaluations at toddlerhood have strong prognostic value in adolescence.

The World Health Organization’s Caregiver Skills Training programme for children with developmental disorders or delays teaches caregivers strategies to help them support their child’s development. Ethiopia has a severe lack of services for children with developmental disorders or delays. This study explored the perspectives of Ethiopian caregivers, professionals and other stakeholders to inform adaptation and implementation of the World Health Organization’s Caregiver Skills Training in Ethiopia. Data collection included (1) a consultation and review, comprising stakeholder meetings, review of draft Caregiver Skills Training materials and feedback from Ethiopian Master Trainees and (2) a pre-pilot including quantitative feasibility and acceptability measures and qualitative interviews with caregivers (n = 9) and programme facilitators/observers (n = 5). The consultation participants indicated that the Caregiver Skills Training addresses an urgent need and is relevant to the Ethiopian context. Several adaptations were proposed, including more emphasis on psycho-education, stigma, parental feelings of guilt and expectations of a cure. The adapted Caregiver Skills Training was pre-piloted with excellent participation (100%) and retention (90%) rates. Four themes were developed from the qualitative data: (1) Programme acceptability and relevance, (2) Perceived programme benefits, (3) Challenges and barriers and (4) Suggestions for improvement. The World Health Organization’s Caregiver Skills Training addresses a local need and, with careful adaptations, is feasible and acceptable to be implemented in Ethiopia. These findings may have relevance to low-resource settings worldwide.

Youth with autism spectrum disorder can face social-communication challenges related to sexuality, dating, and friendships. The purpose of this study was to assess the feasibility, acceptability, and preliminary efficacy of the Supporting Teens with Autism on Relationships program. In total, 84 youth with autism spectrum disorder aged 9 to 18 and their parents participated in this study; two groups received the Supporting Teens with Autism on Relationships program (interventionist-led parent group vs parent self-guided), while an attentional control group received a substance abuse prevention program that included instruction in problem-solving and social skills. Feasibility and acceptability of the Supporting Teens with Autism on Relationships program was high overall. The Supporting Teens with Autism on Relationships program was effective in increasing parent and youth knowledge of sexuality, while the attentional control was not. There was preliminary support for improvement in parenting efficacy related to discussing sexuality with their children. Gains were seen among completers regardless of whether the parent received support from a facilitator. Implications and future directions are discussed.

This study examined the daily routines and activities of Mexican-heritage mothers and their children with autism spectrum disorder. Experienced sampling methods were used to capture families’ current daily routines and activities, how parents valued those activities, and whether the activity was part of the child’s autism spectrum disorder intervention. A total of 32 mothers were texted five times per day over five consecutive days for a total of 721 observations. Mothers frequently engaged in Self-Care (e.g. showering), General Caregiving (e.g. cooking), and House Chores (e.g. laundry). Children engaged in activities in which interventions could easily be integrated (e.g. Academics, Self-Care, and Playing with Others). Families spent less than one-third (26.1%) of their activities participating in interventions. Mothers and children jointly spent time in General Caregiving, Playing with Others, and Using Electronics. Practitioners should focus on integrating evidence-based interventions into daily joint routine activities.

To promote knowledge and acceptance of autism, Sesame Workshop created an online initiative: See Amazing in All Children. This nationwide evaluation of See Amazing assessed whether it increased knowledge and acceptance, promoted community inclusion, reduced parenting strain, and enhanced parenting competence. Survey responses were collected online from parents of children (age ⩽ 6) with and without autism before (N = 1010), 1 week after (N = 510), and, for parents of autistic children, 1 month after (N = 182) they viewed the See Amazing materials. Following exposure, parents of non-autistic children showed small but significant increases in knowledge of autism and, like parents of autistic children, greater acceptance of autistic children. Parents of autistic children reported less strain, increased parenting competence, and more hope about involving their child in their community. That the See Amazing materials invoked positive changes in the general parent community and in parents of autistic children suggests that See Amazing materials have the potential to be an effective resource to increase acceptance and community inclusion, although limitations of self-selection, dropout rate, and lack of control group constrain interpretation. Implications include support for targeting acceptance as a step beyond awareness campaigns, though actual behavior change is a subject for future research.

Children with autism spectrum disorder exhibit significant difficulties with emotion regulation. Respiratory sinus arrhythmia is a biomarker for processes related to emotion regulation, with higher baseline rates linked to beneficial outcomes. Although reduction in respiratory sinus arrhythmia in response to challenge can index adaptive processes in community samples, excessive withdrawal may suggest loss of regulatory control among children with clinical concerns. Psychophysiological risk for problems may be protected against or exacerbated by parenting environments more or less supportive of the development of children’s regulatory competence. Respiratory sinus arrhythmia was examined in 61 children with autism spectrum disorder ages 6–10 years in relation to externalizing behavior, and parenting was considered as a moderator. Respiratory sinus arrhythmia was obtained during laboratory tasks, and positive parenting, negative parenting, and children’s externalizing behaviors were each indexed through multiple methods. Respiratory sinus arrhythmia reactivity interacted with negative, but not positive parenting. Higher respiratory sinus arrhythmia reactivity was associated with more externalizing behavior under conditions of higher negative parenting, but with lower externalizing behavior at lower levels of negative parenting. Similarly, negative parenting was only associated with externalizing behaviors in the context of high child respiratory sinus arrhythmia reactivity. Implications for our understanding of emotion regulation in children with autism spectrum disorder, and for related interventions, are discussed.

Recent studies have suggested that individuals who exhibit heightened sensitivity also exhibit higher rates and severity of restricted interests and repetitive behaviours. This line of research has been conducted almost exclusively through caregiver reports of sensitivity. Here, a more rigorous psychophysics paradigm was applied to assess sensory sensitivity and relate hypersensitivity to restricted interests and repetitive behaviours. In addition, commonly used questionnaire measures of sensory sensitivity were collected to determine if self-reported measures accurately reflect behavioural measures of sensory sensitivity. In all, 90 typically developing participants completed a visual detection task, a questionnaire measure of sensory processing and a measure of restricted interests and repetitive behaviours. Visual sensitivity, measured both behaviourally and with questionnaires, is positively related to restricted interests and repetitive behaviours. Surprisingly, visual sensitivity as measured behaviourally and through self-report are unrelated. Furthermore, a regression analysis suggests that while restricted interests and repetitive behaviours can be predicted based on both behavioural and self-reported sensitivity, these two predictors account for different portions of the variance in restricted interests and repetitive behaviours. Thus, while these results provide evidence supporting the contribution of sensory sensitivity to restricted interests and repetitive behaviours, these results also indicate that behavioural and questionnaire measures of sensory sensitivity are measuring two distinct constructs. We hypothesize that behavioural measures are measuring sensory sensitivity, while questionnaires measures are in fact measuring sensory reactivity.

Females often receive autism spectrum condition diagnoses later than males, leaving needs misunderstood. This study aimed to explore the lived experiences of female adults diagnosed with an autism spectrum condition in middle to late adulthood. Eleven autistic females diagnosed over the age of 40 years completed semi-structured interviews, analysed using Interpretative Phenomenological Analysis. Four superordinate themes emerged: A hidden condition (pretending to be normal and fitting in; mental health and mislabelling), The process of acceptance (initial reactions and search for understanding; re-living life through a new lens), The impact of others post-diagnosis (initial reactions; stereotyped assumptions), and A new identity on the autism spectrum (negotiating relationships, connections and community; changing well-being and views of the self; the meaning of diagnosis). Findings highlight several factors not previously identified that affect late diagnosis in females, including widespread limited understandings of others. Diagnosis was experienced by several participants as facilitating transition from being self-critical to self-compassionate, coupled with an increased sense of agency. Participants experienced a change in identity that enabled greater acceptance and understanding of the self. However, this was painful to adjust to at such a late stage.

The EarlyBird programme is a group-based psychoeducation intervention for parents of young children with autism. Although it is widely used in the United Kingdom, the evidence base for the programme is very limited. Using a mixed method, non-randomised research design, we aimed to test (1) the acceptability of the research procedures (recruitment, retention, suitability of measures), (2) the parental acceptability of EarlyBird (attendance, views of the programme, perceived changes) and (3) the facilitator acceptability of EarlyBird (fidelity, views of the programme, perceived changes). Seventeen families with a 2- to 5-year-old autistic child and 10 EarlyBird facilitators took part. Pre- and post-intervention assessment included measures of the child’s autism characteristics, cognitive ability, adaptive behaviour, emotional and behavioural problems and parent-reported autism knowledge, parenting competence, stress and wellbeing. Semi-structured interviews were completed at post-intervention with parents and facilitators. For those involved in the study, the research procedures were generally acceptable, retention rates were high and the research protocol was administered as planned. Generally, positive views of the intervention were expressed by parents and facilitators. Although the uncontrolled, within-participant design does not allow us to test for efficacy, change in several outcome measures from pre- to post-intervention was in the expected direction. Difficulties were encountered with recruitment (opt-in to the groups was ~56% and opt-in to the research was 63%), and strategies to enhance recruitment need to be built into any future trial. These findings should be used to inform protocols for pragmatic, controlled trials of EarlyBird and other group-based interventions for parents with young autistic children.

Parent–Child Interaction Therapy is an empirically based, behavioral parent training program for young children exhibiting disruptive behaviors. Parent–Child Interaction Therapy shows promise for treating disruptive behaviors in children with autism spectrum disorder. Treatment processes (i.e. treatment length and homework compliance), parenting skills, parenting stress, and behavioral outcomes (i.e. disruptive and externalizing behaviors and executive functioning) were compared in 16 children with autism spectrum disorder and 16 children without autism spectrum disorder matched on gender, age, and initial intensity of disruptive behaviors. Samples were statistically similar in terms of child receptive language, child race and ethnicity, parent age, gender and education, and number of two-parent families in treatment. Families received standard, mastery-based Parent–Child Interaction Therapy. Both groups demonstrated significant and clinically meaningful improvements in child disruptive and externalizing behavior and executive functioning, parenting skills, and parenting stress. Length of treatment, homework compliance, and parent and child outcomes did not differ significantly between groups. A subset of children with autism spectrum disorder also showed significant improvements in social responsiveness, adaptive skills, and restricted/repetitive behaviors. This study replicates and extends prior research by demonstrating that children with and without autism spectrum disorder experience similar benefits following Parent–Child Interaction Therapy. Findings may expand the availability and dissemination of time-limited, evidence-based interventions for autism spectrum disorder and comorbid disruptive behaviors.

A retrospective data analysis using 2004–2014 Healthcare Cost and Utilization Project Nationwide Inpatient Sample was conducted to examine in-hospital mortality among adults with autism spectrum disorders in the United States compared to individuals in the general population. We modeled logistic regressions to compare inpatient hospital mortality between adults with autism spectrum disorders (n = 34,237) and age-matched and sex-matched controls (n = 102,711) in a 1:3 ratio. Adults with autism spectrum disorders had higher odds for inpatient hospital mortality than controls (odds ratio = 1.44, 95% confidence interval: 1.29–1.61, p < 0.001). This risk remained high even after adjustment for age, sex, race/ethnicity, income, number of comorbidities, epilepsy and psychiatric comorbidities, hospital bed size, hospital region, and hospitalization year (odds ratio = 1.51, 95% confidence interval: 1.33–1.72, p < 0.001). Adults with autism spectrum disorders who experienced in-hospital mortality had a higher risk for having 10 out of 27 observed Elixhauser-based medical comorbidities at the time of death, including psychoses, other neurological disorders, diabetes, hypothyroidism, rheumatoid arthritis collagen vascular disease, obesity, weight loss, fluid and electrolyte disorders, deficiency anemias, and paralysis. The results from the interaction of sex and autism spectrum disorders status suggest that women with autism spectrum disorders have almost two times higher odds for in-hospital mortality (odds ratio = 1.95, p < 0.001) than men with autism spectrum disorders. The results from the stratified analysis also showed that women with autism spectrum disorders had 3.17 times higher odds (95% confidence interval: 2.50–4.01, p < 0.001) of in-hospital mortality compared to women from the non–autism spectrum disorders matched control group; this difference persisted even after adjusting for socioeconomic, clinical, and hospital characteristics (odds ratio = 2.75, 95% confidence interval: 2.09–3.64, p < 0.001). Our findings underscore the need for more research to develop better strategies for healthcare and service delivery to people with autism spectrum disorders.

Obsessive–compulsive disorder and autism spectrum disorder commonly co-occur. Adapted cognitive behavior therapy for obsessive–compulsive disorder in adults with autism spectrum disorder has not previously been evaluated outside the United Kingdom. In this study, 19 adults with obsessive–compulsive disorder and autism spectrum disorder were treated using an adapted cognitive behavior therapy protocol that consisted of 20 sessions focused on exposure with response prevention. The primary outcome was the clinician-rated Yale–Brown Obsessive–Compulsive Scale. Participants were assessed up to 3 months after treatment. There were significant reductions on the Yale–Brown Obsessive–Compulsive Scale at post-treatment (d = 1.5), and improvements were sustained at follow-up (d = 1.2). Self-rated obsessive–compulsive disorder and depressive symptoms showed statistically significant reductions. Improvements in general functioning and quality of life were statistically non-significant. Three participants (16%) were responders at post-treatment and four (21%) were in remission from obsessive–compulsive disorder. At follow-up, three participants (16%) were responders and one (5%) was in full remission. Adapted cognitive behavior therapy for obsessive–compulsive disorder in adults with co-occurring autism spectrum disorder is associated with reductions in obsessive–compulsive symptoms and depressive symptoms. However, outcomes are modest; few patients were completely symptom free, and treatment engagement was low with few completed exposures and low adherence to homework assignments. We identify and discuss the need for further treatment refinement for this vulnerable group.

Children with autism spectrum disorder are at risk of developing internalizing and externalizing problems. However, information on early development of behavior problems and the contributing role of emotional functioning in preschool children with autism spectrum disorder is scarce. This study collected data of boys with and without autism spectrum disorder (N = 156; age: 2–6 years) over three consecutive years (three waves), about their internalizing and externalizing symptoms and emotional functioning (i.e. emotion control, recognition, and vocabulary), using parent-report questionnaires. No age effect was found on internalizing or externalizing problems for boys with and without autism spectrum disorder. Boys with autism spectrum disorder displayed more behavior problems than their typically developing peers and showed lower levels of emotional functioning. Better emotion control and improved emotion recognition were associated with a decrease in problem behaviors for boys with and without autism spectrum disorder, whereas improved emotion vocabulary was uniquely related to a decrease in externalizing problems in boys with autism spectrum disorder. Our findings suggest that boys with and without autism spectrum disorder showed similar developmental courses of internalizing and externalizing problems. However, lower levels of emotional functioning were already more pronounced in boys with autism spectrum disorder at a young age. This contributes to higher levels of behavior problems.

Therapeutic alliance is often an important aspect of psychotherapy, though it is rarely examined in clients with autism. This study aims to determine the child pre-treatment variables and treatment outcomes associated with early and late alliance in cognitive behaviour therapy targeting emotion regulation for children with autism. Data were collected from 48 children with autism who participated in a larger randomized-controlled trial. Pre-treatment child characteristics included child, parent, and clinician report of child emotional and behavioural functioning. Primary outcome measures included child and parent-reported emotion regulation. Therapeutic alliance (bond and task-collaboration) was measured using observational coding of early and late therapy sessions. Pre-treatment levels of child-reported emotion inhibition were associated with subsequent early and late bond. Pre-treatment levels of parent and child-reported emotion regulation were related to early and late task-collaboration. Late task-collaboration was also associated with pre-treatment levels of behavioural and emotional symptom severity. Task-collaboration in later sessions predicted improvements in parent-reported emotion regulation from pre- to post-therapy. Future research is needed to further examine the role of task-collaboration as a mechanism of treatment change in therapies for children with autism.

‘High functioning autism’ is a term often used for individuals with autism spectrum disorder without an intellectual disability. Over time, this term has become synonymous with expectations of greater functional skills and better long-term outcomes, despite contradictory clinical observations. This study investigated the relationship between adaptive behaviour, cognitive estimates (intelligence quotient) and age at diagnosis in autism spectrum disorder. Participants (n = 2225, 1–18 years of age) were notified at diagnosis to a prospective register and grouped by presence (n = 1041) or absence (n = 1184) of intellectual disability. Functional abilities were reported using the Vineland Adaptive Behaviour Scales. Regression models suggested that intelligence quotient was a weak predictor of Vineland Adaptive Behaviour Scales after controlling for sex. Whereas the intellectual disability group’s adaptive behaviour estimates were close to reported intelligence quotients, Vineland Adaptive Behaviour Scales scores fell significantly below intelligence quotients for children without intellectual disability. The gap between intelligence quotient and Vineland Adaptive Behaviour Scales scores remained large with increasing age at diagnosis for all children. These data indicate that estimates from intelligence quotient alone are an imprecise proxy for functional abilities when diagnosing autism spectrum disorder, particularly for those without intellectual disability. We argue that ‘high functioning autism’ is an inaccurate clinical descriptor when based solely on intelligence quotient demarcations and this term should be abandoned in research and clinical practice.

Humans are commonly motivated towards cooperation and prosociality. In this study, we examined this motivational predisposition in autistic individuals. Using an adaptation of the Cyberball paradigm, we investigated subsequent pro-social behaviour after witnessing social exclusion. Participants witnessed and played a series of Cyberball games, rated their affective state and valued emotional faces with respect to their approachability. Results showed that participants from both groups were aware of the social exclusion. However, while neurotypically developing participants engaged in pro-social behaviour in reaction to the exclusion, autistic participants showed less alterations, in terms of either behaviour or affective state. The current findings suggest a distinct motivational drive and processing of social reward stimuli in autism, which may result in behavioural responses divergent from typical development when engaging in the social world.

A significant treatment gap exists in low and middle income countries such as India for children with autism spectrum disorder. The Autism Intervention Training Program, a comprehensive 6-month program for training professionals in transdisciplinary evidence-based practices to address concerns associated with autism spectrum disorder, was piloted in India to address this gap. This study attempted to capture the perspectives of trainees on the effectiveness of andragogical approaches adopted in the Autism Intervention Training Program and the impact of this training on their work. An exploratory qualitative study was conceptualized, and in-depth interviews were conducted with 11 Autism Intervention Training Program trainees. Trainees highlighted the benefits of a blended training format, peer learning, and a responsive, reflective, experiential, and respectful approach to teaching and supervision. The impact of the program was perceived through an increase in trainees’ knowledge and skills, impact on their organizations, and positive outcomes for children with autism spectrum disorder and their families. There is a need to develop and document comprehensive, contextualized, and evidence-based training programs for autism spectrum disorder professionals in low and middle income countries. Focusing on andragogical frameworks while conceptualizing and delivering these training programs is underscored, as approaches that promote self-efficacy in learners and enable transformative learning can lead to a cascading impact in resource-constrained settings.

While altered gaze behaviour during facial emotion recognition has been observed in autistic individuals, there remains marked inconsistency in findings, with the majority of previous research focused towards the processing of basic emotional expressions. There is a need to examine whether atypical gaze during facial emotion recognition extends to more complex emotional expressions, which are experienced as part of everyday social functioning. The eye gaze of 20 autistic and 20 IQ-matched neurotypical adults was examined during a facial emotion recognition task of complex, dynamic emotion displays. Autistic adults fixated longer on the mouth region when viewing complex emotions compared to neurotypical adults, indicating that altered prioritization of visual information may contribute to facial emotion recognition impairment. Results confirm the need for more ecologically valid stimuli for the elucidation of the mechanisms underlying facial emotion recognition difficulty in autistic individuals.

Professionals have expressed concerns about the quality of autism-related information available from Internet-based sources. The purpose of this study was to examine the source, content, usability, and actionability of autism spectrum disorder–related information contained in 100 different videos directed to families of children with autism spectrum disorder uploaded to YouTube. Upload sources were identified, and video content was coded. Understandability and actionability of the videos were examined using Patient Education Materials Assessment Tool for Audiovisual Materials. The collective number of views of the videos was almost 100 million. The length of videos was 691.17 min (i.e. 11.5 h) with the shortest video being 30 s and the longest video being 37.36 min. The YouTube videos related to autism spectrum disorder covered a range of issues, although much of the content was focused on signs and symptoms. No difference in content reporting was noted based on sources for most categories, although differences were noted in some categories (e.g. professionals mentioned diagnosis and resources more frequently). Poor understandability and actionability scores (i.e. below 70%) were reported for all videos regardless of video source. However, the videos generated by the professionals were superior in terms of understandability. Study implications and recommendations for further research are discussed.