Autism

Evidence that interpersonal interactions and self-appraisal in social context are crucial in developing self-understanding raises concerns about how pupils with autism spectrum disorder make sense of themselves in school settings where many experience social marginalisation. Metasynthesis was used to systematically extract and integrate findings from qualitative studies examining the mainstream school experiences of these students. Synthesised findings identified three, intermeshing, aspects of experience which contribute to many pupils with autism spectrum disorder making sense of themselves as ‘different’ to typical peers in a negative way: difficulties linked to autism spectrum disorder; interpersonal relationships, particularly with peers; and accessibility of the school environment. Typical pupils’ attitudes and responses towards peers with autism spectrum disorder, unusual sensory reactions to the physical school environment and individual sense-making about the self are highlighted as key areas requiring further research and intervention to improve the experiences, self-esteem and well-being of pupils with autism spectrum disorder in inclusive settings and to inform educational policy and practice.

The screening power of the CBCL/1½–5’s Withdrawn and Diagnostic and Statistical Manual of Mental Disorders-Pervasive Developmental Problems (DSM-PDP) scales to identify children diagnosed with autism spectrum disorder at 24 months was tested in a longitudinal, familial high-risk study. Participants were 56 children at high risk for autism spectrum disorder due to an affected older sibling (high-risk group) and 26 low-risk children with a typically developing older sibling (low-risk group). At 24 months, 13 of the 56 high-risk children were diagnosed with autism spectrum disorder, whereas the other 43 were not. The high-risk children diagnosed with autism spectrum disorder group had significantly higher scores on the CBCL/1½–5’s Diagnostic and Statistical Manual of Mental Disorders-Pervasive Developmental Problems and Withdrawn scales than children in the low-risk and high-risk children not diagnosed with autism spectrum disorder groups ( η p 2 > 0 . 50 ) . Receiver operating characteristic analyses yielded very high area under the curve values (0.91 and 0.89), and a cut point of T ⩾ 60 yielded sensitivity of 77% and specificity of 97% to 99% between the high-risk children diagnosed with autism spectrum disorder and the combination of low-risk and high-risk children not diagnosed with autism spectrum disorder. Consistent with several previous studies, the CBCL/1½–5’s Diagnostic and Statistical Manual of Mental Disorders-Pervasive Developmental Problems scale and the Withdrawn syndrome differentiated well between children diagnosed with autism spectrum disorder and those not diagnosed.

There is a severe shortage of services for children with autism in Ethiopia; access to services is further impeded by negative beliefs and stigmatising attitudes towards affected children and their families. To increase access to services, care provision is decentralised through task-shifted care by community health extension workers. This study aimed to examine the impact of a brief training (Health Education and Training; HEAT) for Ethiopian rural health extension workers and comprised three groups: (1) health extension workers who completed a basic mental health training module (HEAT group, N = 104); (2) health extension workers who received enhanced training, comprising basic HEAT as well as video-based training on developmental disorders and a mental health pocket guide (HEAT+ group, N = 97); and (3) health extension workers untrained in mental health (N = 108). All participants completed a questionnaire assessing beliefs and social distance towards children with autism. Both the HEAT and HEAT+ group showed fewer negative beliefs and decreased social distance towards children with autism compared to the untrained health extension worker group, with the HEAT+ group outperforming the HEAT group. However, HEAT+ trained health extension workers were less likely to have positive expectations about children with autism than untrained health extension workers. These findings have relevance for task-sharing and scale up of autism services in low-resource settings worldwide.

A practical consideration for many intellectually able adults with autism spectrum disorder (ASD) is whether to disclose their diagnostic status or try to mask their autistic characteristics to avoid judgment and discrimination. Here, we assessed first impressions of adults with ASD and typically developing controls (N = 40) made by typically developing observers (N = 215) when their diagnostic status was either withheld, accurately provided, or inaccurately provided. First impressions were less favorable for ASD participants compared to typically developing controls across a range of judgments, but were significantly more positive when accurately labeled as ASD compared to when no label was provided, when mislabeled as typically developing, or when mislabeled as having schizophrenia. For typically developing participants, ratings did not change when accurately labeled but improved when mislabeled as ASD. Greater autistic traits for the ASD and typically developing participants were associated with less favorable first impressions, and females were rated more favorably than males. Autism knowledge of the raters, but not age, IQ, or autistic traits, was positively associated with more favorable impressions of ASD participants. Collectively, these findings suggest that first impressions for intellectually able adults with ASD improve with diagnostic disclosure and increased autism understanding on the part of peers.

Previous research suggests impaired metacognitive monitoring and mathematics under-achievement in autism spectrum disorder. Within educational settings, metacognitive monitoring is supported through the provision of feedback (e.g. with goal reminders and by explicitly correcting errors). Given the strength of the relationship between metacognition, learning and educational attainment, this research tested new computer-based metacognitive support (the ‘Maths Challenge’) for mathematics learners with autism spectrum disorder within the context of their classroom. The Maths Challenge required learners to engage in metacognitive monitoring before and after answering each question (e.g. intentions and judgements of accuracy) and negotiate with the system the level of difficulty. Forty secondary school children with autism spectrum disorder and 95 typically developing learners completed the Maths Challenge in either a Feedback condition, with metacognitive monitoring support regarding the accuracy of their answers, goal reminders and strategy support, or with No Feedback. Contrary to previous findings, learners with autism showed an undiminished ability to detect errors. They did, however, demonstrate reduced cohesion between their pre- and post-test intentions. Crucially, support from the Feedback condition significantly improved task performance for both groups. Findings highlight important implications for educational interventions regarding the provision of metacognitive support for learners with autism to ameliorate under-performance in mathematics within the classroom.

Domains of quality of life in children with autism spectrum disorder have not previously been explored and there has been no quality of life measure developed for this population. Our study investigated parent observations to identify the domains important to children with autism spectrum disorder who also had an intellectual disability. In all, 21 parents (19 mothers, 2 fathers) of children with autism spectrum disorder (aged 6–17 years) participated in a qualitative study to discuss their child’s quality of life. Thematic analysis using a grounded theory framework was conducted and 10 domains emerged in relation to health and well-being, capacity to perform and develop skills in daily life, and connections with the community and environment. Unique aspects of quality of life included varying levels of social desire, consistency of routines, and time spent in nature and the outdoors, which are not comprehensively captured in existing measures. Parent observations provide an initial framework for understanding quality of life in autism spectrum disorder and support the development of a new measure for this population.

Comparison of oral health status, dental needs and dietary habits of children with autism and their healthy siblings. In this cross-sectional study, oral hygiene measures, sugar consumption and dental examination of 58 Pakistani children with autism spectrum disorder were assessed and compared to 27 of their siblings without autism spectrum disorder. Questionnaires were distributed to their parents regarding oral hygiene measures, dietary habits and past dental experiences. Clinical examination for the presence of dental caries, periodontal disease or parafunctional habits was carried out and findings were associated with the mother’s education. Children with autism had a higher incidence of caries (50%) as compared to their healthy siblings (22.2%). Significant differences were observed between the groups regarding frequency of brushing and independent brushing. Dental plaque was observed on anterior teeth in 24% children with autism spectrum disorder as compared to 14% in the control group. Trauma due to self-injurious behaviour and bruxism was also recorded and compliance during clinical examination was noted in children with autism spectrum disorder. There was no significant difference in sugar consumption between children with autism spectrum disorder and their healthy siblings. Children with autism had greater dental needs and were more prone to developing dental problems as compared to their healthy siblings.

Children with autism spectrum disorder have deficits in adaptive functioning. This study examines the adaptive behavior, its association with cognitive ability, gender, age, and symptom severity in children with autism spectrum disorder. Using data from Autism Treatment Network registry, the adaptive behavior profiles were examined in 2538 school-aged children (between 5 and 17 years, mean: 8.8 years, standard deviation: 3.0) who had an overall intelligence quotient and Vineland Adaptive Behavior Scale scores available. The children were grouped according to their intelligence quotient (low intelligence quotient < 70; borderline intelligence quotient = 70–85; average intelligence quotient > 85), age (5–10 and 11–17 years), and gender for the analyses. Significantly lower Vineland Adaptive Behavior Scale scores were found in borderline and average intelligence quotient groups when compared to mean intelligence quotient, while an opposite pattern was seen in the low intelligence quotient group, with better adaptive behavior scores than mean intelligence quotient. Vineland Adaptive Behavior Scale standard scores were positively correlated with intelligence quotient and poorly associated with autism spectrum disorder severity. Younger children had significantly higher Vineland Adaptive Behavior Scale scores. Adjusted comparisons by gender were not significant. Adaptive behavior profiles in the intelligence quotient categories are discussed. This study confirms a positive relationship between adaptive behavior and intellectual function in autism and indicates that children with higher intelligence quotient and older age are specifically impaired, with lower adaptive behavior, highlighting the need for assessment and targeted intervention in these groups. Future directions for research are discussed.

Racial differences in parent report of concerns about their child’s development to healthcare providers may contribute to delayed autism spectrum disorder diagnoses in Black children. We tested the hypotheses that compared to White parents, Black parents of children with autism spectrum disorder would report fewer concerns about autism symptoms and would be more likely to report concerns about disruptive behaviors. A sample of 18- to 40-month-old toddlers (N = 174) with autism spectrum disorder and their parent participated. After screening positive for autism spectrum disorder risk, but prior to a diagnostic evaluation, parents completed free-response questions soliciting concerns about their child’s development. Parent responses were coded for the presence or the absence of 10 possible concerns, which were grouped into autism concerns (e.g. social and restricted and repetitive behavior concerns) or non-autism concerns (e.g. general developmental and disruptive behavior concerns). Compared to White parents, Black parents reported significantly fewer autism concerns and fewer social and restricted and repetitive behavior concerns. However, Black parents did not report significantly fewer non-autism concerns. Race did not influence parent report of disruptive behavior concerns. Lower reporting of autism concerns by Black parents may impact providers’ abilities to identify children who need further screening or evaluation.

Despite the prevalence of studies showing increased stress among mothers of individuals with autism spectrum disorders, few studies have examined general stress among typically developing siblings. This study used an online survey to compare the levels of self-reported stress between adolescent siblings of individuals with autism spectrum disorder and Down syndrome. Sibling of individuals with autism reported significantly more overall stress than did siblings of individuals with Down syndrome, as well as more stress specifically attributed to the brother/sister with autism. The two groups did not differ on perceived social support from family and friends. In linear regression models, the disability group (autism vs Down syndrome) was significantly related to sibling stress above and beyond target child behavior problems, perceived social support, and demographic factors. These results help shed light on the daily experiences of adolescent siblings of individuals with autism and call for more research into potential interventions to address increased stress levels.

Previous research has demonstrated links between anorexia nervosa and autism spectrum disorder however, few studies have examined the possible impact of symptoms of autism spectrum disorder on clinical outcomes in anorexia nervosa. The aim of this study was to examine the association between symptoms of autism spectrum disorder and eating disorders, and other psychopathology during the course of inpatient treatment in individuals with anorexia nervosa. Participants with anorexia nervosa (n = 171) completed questionnaires exploring eating disorder psychopathology, symptoms of depression and anxiety, and everyday functioning at both admission and discharge. Characteristics associated with autism spectrum disorder were assessed using the Autism Spectrum Quotient, short version. Autism spectrum disorder symptoms were significantly positively correlated with eating disorder psychopathology, work and social functioning, and symptoms of depression and anxiety, but not with body mass index. Autism Spectrum Quotient, short version scores remained relatively stable from admission to discharge but there was a small, significant reduction in scores. There was no interaction between time and Autism Spectrum Quotient, short version scores on clinical symptom change. In anorexia nervosa, autism spectrum disorder symptoms appear to be associated with a more severe clinical presentation on admission to inpatient care. Autism spectrum disorder symptoms as assessed by self-report measures may be exacerbated by other mental health psychopathology, which warrants further investigation.

There has been recent interest in the relationship between socioeconomic status and the diagnosis of autism in children. Studies in the United States have found lower rates of autism diagnosis associated with lower socioeconomic status, while studies in other countries report no association, or the opposite. This article aims to contribute to the understanding of this relationship in the United Kingdom. Using data from the Born in Bradford cohort, comprising 13,857 children born between 2007 and 2011, it was found that children of mothers educated to A-level or above had twice the rate of autism diagnosis, 1.5% of children (95% confidence interval: 1.1%, 1.9%) compared to children of mothers with lower levels of education status 0.7% (95% confidence interval: 0.5%, 0.9%). No statistically significant relationship between income status or neighbourhood material deprivation was found after controlling for mothers education status. The results suggest a substantial level of underdiagnosis for children of lower education status mothers, though further research is required to determine the extent to which this is replicated across the United Kingdom. Tackling inequalities in autism diagnosis will require action, which could include increased education, awareness, further exploration of the usefulness of screening programmes and the provision of more accessible support services.

This study investigated language profiles in a community-based sample of 104 children aged 1–3 years who had been diagnosed with autism spectrum disorder using Diagnostic and Statistical Manual of Mental Disorders (5th ed.) diagnostic criteria. Language was assessed with the Mullen scales, Preschool Language Scale, fifth edition, and Vineland-II parent-report. The study aimed to determine whether the receptive-to-expressive language profile is independent from the assessment instrument used, and whether nonverbal cognition, early communicative behaviors, and autism spectrum disorder symptoms predict language scores. Receptive-to-expressive language profiles differed between assessment instruments and reporters, and Preschool Language Scale, fifth edition profiles were also dependent on developmental level. Nonverbal cognition and joint attention significantly predicted receptive language scores, and nonverbal cognition and frequency of vocalizations predicted expressive language scores. These findings support the administration of multiple direct assessment and parent-report instruments when evaluating language in young children with autism spectrum disorder, for both research and in clinical settings. Results also support that joint attention is a useful intervention target for improving receptive language skills in young children with autism spectrum disorder. Future research comparing language profiles of young children with autism spectrum disorder to children with non-autism spectrum disorder developmental delays and typical development will add to our knowledge of early language development in children with autism spectrum disorder.

Cooperation is a fundamental human ability that seems to be inversely related to aggressive behaviour in typical development. However, there is no knowledge whether similar association holds for children with autism spectrum disorder. A total of 27 boys with autism spectrum disorder and their gender, age and total score intelligence matched controls were studied in order to determine associations between cooperation, reactive aggression and autism spectrum disorder–related social impairments. The participants performed a modified version of the Prisoner’s Dilemma task and the Pulkkinen Aggression Machine which measure dimensions of trust, trustworthiness and self-sacrifice in predisposition to cooperate, and inhibition of reactive aggression in the absence and presence of situational cues, respectively. Autism spectrum disorder severity–related Autism Diagnostic Interview-algorithm scores were ascertained by interviewing the parents of the participants with a semi-structured parental interview (Developmental, Dimensional and Diagnostic Interview). The results showed that albeit the boys with autism spectrum disorder were able to engage in reciprocation and cooperation regardless of their social impairments, their cooperativeness was positively associated with lower levels of reactive aggression and older age. Thus, strengthening inhibition mechanisms that regulate reactive aggression might make boys with autism spectrum disorder more likely to prefer mutual gain over self-interest in cooperation.

Almost all states have insurance coverage mandates for childhood autism spectrum disorder treatment, yet little is known about how mandates affect spending and service use. We evaluated a 2011 Kansas law mandating comprehensive coverage of autism spectrum disorder treatments in the State Employee Health Plan. Data were extracted from the Kansas All-Payer Claims Database from 2009 to 2013 for enrollees of State Employee Health Plan and private health plans. The sample included children aged 0–18 years with >2 claims with an autism spectrum disorder diagnosis insured through State Employee Health Plan or a comparison group enrolled through private health plans. We estimated differences-in-differences regression models to compare trends among State Employee Health Plan to privately insured children. Average annual total spending on autism spectrum disorder services increased by US$912 (95% confidence interval: US$331–US$1492) and average annual out-of-pocket spending on autism spectrum disorder services increased by US$138 (95% confidence interval: US$53–US$223) among diagnosed children in the State Employee Health Plan relative to the comparison group following the mandate, representing 92% and 75% increases over baseline total and out-of-pocket autism spectrum disorder spending, respectively. Average annual quantity of outpatient autism spectrum disorder services increased by 15.0 services (95% confidence interval: 8.4–21.6) among children in the State Employee Health Plan, more than doubling the baseline average. Implementation of a comprehensive autism spectrum disorder mandate in the Kansas State Employee Health Plan was associated with substantial increases in service use and spending for autism spectrum disorder treatment among autism spectrum disorder–diagnosed children.

Engagement with stakeholders is an essential part of the research process. This is particularly the case for early autism research with infant cohorts and their families, where a range of ethical issues are pertinent. Here, we report on a large survey of parents who have a child on the autism spectrum (n = 1040) which specifically probed attitudes to early autism research. The large majority of parents showed positive attitudes overall, and these were associated with greater access to services, higher service quality ratings and higher rates of intellectual disability among their children. Parents valued the scientific goals of research, but half of parents also reported that an intervention component would be an essential prerequisite for them to participate in research. If enrolled in a study, parents were positive about most commonly used measures though less favourably disposed towards brain scans for children. They valued direct contact with the research team and openness in data sharing. We interpret our findings in terms of lessons for the early autism research community and for stakeholder engagement projects.

Previous studies report that minimally verbal children with autism spectrum disorder show impaired picture comprehension when matched to typically developing controls on language comprehension. Here, we compare both picture comprehension and picture production abilities in linguistically delayed children with autism spectrum disorder and typically developing controls matched on language comprehension and language production. Participants were 20 children with autism spectrum disorder (M age: 11.2 years) and 20 typically developing children (M age: 4.4 years) matched on age equivalents for receptive language (autism spectrum disorder, M: 4.6 years; typically developing, M: 4.5 years) and expressive language (autism spectrum disorder, M: 4.4 years; typically developing, M: 4.5 years). Picture comprehension was assessed by asking children to identify the three-dimensional referents of line drawings. Picture production was assessed by asking children to create representational drawings of unfamiliar objects and having raters identify their referents. The results of both picture tasks revealed statistically equivalent performance for typically developing children and children with autism spectrum disorder, and identical patterns of performance across trial types. These findings suggest that early deficits in pictorial understanding displayed by minimally verbal individuals may diminish as their expressive language skills develop. Theoretically, our study indicates that development in linguistic and pictorial domains may be inter-related for children with autism spectrum disorder (as is the case for typical development).

We examined the role of social motivation and motor execution factors in object-directed imitation difficulties in autism spectrum disorder. A series of to-be-imitated actions was presented to 35 children with autism spectrum disorder and 20 typically developing children on an Apple^® iPad^® by a socially responsive or aloof model, under conditions of low and high motor demand. There were no differences in imitation performance (i.e. the number of actions reproduced within a fixed sequence), for either group, in response to a model who acted socially responsive or aloof. Children with autism spectrum disorder imitated the high motor demand task more poorly than the low motor demand task, while imitation performance for typically developing children was equivalent across the low and high motor demand conditions. Furthermore, imitative performance in the autism spectrum disorder group was unrelated to social reciprocity, though positively associated with fine motor coordination. These results suggest that difficulties in object-directed imitation in autism spectrum disorder are the result of motor execution difficulties, not reduced social motivation.

Research over the past three decades has seen a revived interest in the way the human body—and the way in which it is perceived—interacts with aspects of our experience. Consequently, interoception (i.e. the perception of physiological feedback from the body) has recently been shown to be associated with a wide range of cognitive, emotional, and affective functions, making it broadly relevant to the study of autism spectrum disorder. Although limited qualitative accounts and empirical studies suggest that individuals with autism spectrum disorder encounter abnormalities when perceiving and integrating physiological feedback from their bodies, other studies have suggested that people with/without autism spectrum disorder do not differ in interoceptive ability after accounting for alexithymia. In this article, we discuss the newly recognized importance of interoception in autism spectrum disorder with a focus on how deficits in the perception of bodily feedback might relate to the core features and co-occuring psychopathology of autism spectrum disorder. Finally, a new integrated theory is advanced which posits that people with autism spectrum disorder may experience a reduced capacity to integrate interoceptive information that may result in a narrow attentional bodily focus and reduced motivational and behavioral drives.

Although the Child Behavior Checklist 1½–5’s 12-item Diagnostic and Statistical Manual of Mental Disorders-Autism Spectrum Problems Scale (formerly called Pervasive Developmental Problems scale) has been used in several studies as an autism spectrum disorder screener, the base rate and stability of its items and its measurement model have not been previously studied. We therefore examined the structure, longitudinal invariance, and stability of the Child Behavior Checklist 1½–5’s Diagnostic and Statistical Manual of Mental Disorders-Autism Spectrum Problems Scale in the diverse Generation R (Rotterdam) sample based on mothers’ ratings at 18 months (n = 4695), 3 years (n = 4571), and 5 years (n = 5752). Five items that seemed especially characteristic of autism spectrum disorder had low base rates at all three ages. The rank order of base rates for the 12 items was highly correlated over time (Qs ⩾ 0.86), but the longitudinal stability of individual items was modest (phi coefficients = 0.15–0.34). Confirmatory factor analyses indicated that the autism spectrum disorder scale model manifested configural, metric, and scalar longitudinal invariance over the time period from 18 months to 5 years, with large factor loadings. Correlations over time for observed autism spectrum disorder scale scores (0.25–0.50) were generally lower than the correlations across time of the latent factors (0.45–0.68). Results indicated significant associations of the autism spectrum disorder scale with later autism spectrum disorder diagnoses.

Students with autism spectrum disorder have been found to experience difficulty with reading comprehension despite intact decoding and word recognition. This identified need for targeted reading comprehension remediation results in a need for teachers to utilize research-based practices and to individualize instruction for students with autism spectrum disorder; however, teachers report a lack of access to such practices. This study utilized survey methodology to gather perceptions and experiences of teachers and to compare teacher preparedness to use effective instructional practices emerging from the extant research to teacher-reported effective practices in the classroom. Study findings, based on 112 participants, reveal a discrepancy between teacher-reported effective practices, and the practices identified as effective through research, indicating a research to practice gap. Implications for practice include professional development recommendations, and the need for increased communication between researchers and teachers.

Restricted interests are an established diagnostic symptom of autism spectrum disorder. While there is considerable evidence that these interests have maladaptive consequences, they also provide a range of benefits. This article introduces a new instrument, the Survey of Favorite Interests and Activities, and uses it to examine the nature of restricted interests in autism spectrum disorder. Respondents report substantial benefits of restricted interests as well as areas of difficulty. The Survey of Favorite Interests and Activities assesses Social Flexibility, Perseveration, Respondent Discomfort, Adaptive Coping, and Atypicality. All scales have Cronbach’s α > 0.70. Age and socioeconomic status have little effect on Survey of Favorite Interests and Activities scales; nor does gender with the exception of interest Atypicality. The expected pattern of correlations with existing scales was found. Research and clinical implications are discussed.

Addressing the challenges of adolescents and emerging adults with autism spectrum disorder is crucial to improving the outcomes of these students in the postsecondary setting. Although secondary and postsecondary educators and staff are critical to helping these students access services, there has been little investigation into the perspectives of this stakeholder group, with respect to the needs of postsecondary students with autism spectrum disorder. A series of focus groups was conducted with secondary and postsecondary educators to understand educator perspectives related to the challenges faced by postsecondary students with autism spectrum disorder. Competence, autonomy and independence, and the development and sustainment of interpersonal relationships emerged as primary areas of difficulty and corresponding need. Results suggest that targeted interventions addressing these areas should be implemented, prior to and during enrollment in a postsecondary setting, to facilitate transition in a comprehensive manner.

The purpose of this Letter to the Editor is to discuss the recent paper, “Lessons learned: Engaging culturally diverse families in neurodevelopmental disorders intervention research” by Ratto et al. Specifically, we are interested in further exploring the question of “who participates in autism spectrum disorder intervention research,” and how this question may impact interpretation of Ratto and colleagues’ paper.