Autism

Naturalistic Developmental Behavioral Interventions have been described as culturally responsive and family-friendly interventions, with research demonstrating improvements in children’s development when receiving these services. Given the child-directed nature of Naturalistic Developmental Behavioral Interventions and the intervention’s congruence with families’ daily routines, many studies have examined the impact of Naturalistic Developmental Behavioral Interventions on family and family member quality of life. Therefore, we conducted a systematic review and meta-analysis to explore the relationship between Naturalistic Developmental Behavioral Interventions and family quality of life. Results suggest that the receipt of Naturalistic Developmental Behavioral Intervention services neither improved nor worsened family and family member quality of life. For those involved in the provision of Naturalistic Developmental Behavioral Intervention services, there is an immediate need to convey to families that children’s improvements will likely not translate into improvements in family quality of life (osf.io/3ua5f).

Autistic adults are at increased risk of both mental and physical health difficulties, and yet can face barriers to accessing healthcare. A meta-ethnographic approach was used to conduct a review of the existing literature regarding autistic adults’ experiences of accessing healthcare. Four databases were systematically searched for qualitative and mixed-method studies reporting on the experiences of autistic adults without a co-occurring learning disability accessing adult healthcare services within the United Kingdom. Fifteen studies met the inclusion criteria, and seven steps were used to systematically extract the data and then generate novel themes. Three superordinate themes were identified: Professionals’ lack of knowledge can be damaging, Need to reduce processing demands and Adaptation to improve engagement. This review highlights the wide-reaching damaging impact misdiagnosis, inadequate or inappropriate treatment, overwhelming environments and inaccessible systems can have on the well-being and ability of autistic adults to engage with treatment. The lack of autism knowledge and understanding experienced in interactions with healthcare professionals, along with autistic adult’s own communication and sensory processing differences, demonstrates the need for widely delivered training co-produced with autistic adults alongside bespoke and person-centred adaptations.

Studies investigating autistic community research priorities indicate a mismatch between what autism research focuses on and what autistic people want to see researched. Furthermore, there has not been a research priority-setting exercise specifically with autistic people in Scotland, where there are unique cultural, political and social contexts. Using a community-based participatory design, we aimed to identify the research priorities of autistic adults living in Scotland. Autistic and non-autistic researchers designed and conducted a survey where 225 autistic adults rated and ranked research topics in order of importance and provided qualitative feedback on issues and questions important to them. The top five research priorities were mental health/well-being, identification and diagnosis of autistic people, support services, knowledge and attitudes towards autistic people and issues impacting autistic women. There were differences in priorities according to different intersections of identity, and qualitative responses indicated a desire for research to focus on support and understanding. The bottom three priorities concerned genetics, treatments and interventions and causes. These findings emphasise the need to address the gap between what autism research focuses on and the everyday lives of autistic people.

Fragile X syndrome (FXS), the leading heritable cause of intellectual disability, has a co-occurrence rate of autism spectrum disorder (ASD) estimated at ~60%. The onset and rates of motor development in FXS are slower relative to neurotypical development, and even more so in the context of co-occurring FXS + ASD. Extant evidence suggests these differences are likely to affect communication, yet this developmental process or how it varies in the context of co-occurring ASD remains unknown in FXS. We aimed to delineate developmental associations between early motor abilities and their rate of development from 9 to 60 months of age on communication outcomes in 51 children with FXS, 28 of whom had co-occurring ASD. We also aimed to identify variation in these developmental associations in the context of co-occurring ASD. Results captured within-syndrome variability in these developmental associations as a function of co-occurring ASD. Fine motor proved to be a robust predictor of receptive communication regardless of co-occurring ASD, but we identified differences between FXS with and without ASD in the association between aspects of motor development and expressive outcomes. Findings provide evidence for differential developmental processes in the context of co-occurring ASD with implications for timely developmental intervention.

There is a long tradition of research into autistic people’s executive function skills. Yet, despite decades of research on EF in autism, the existing literature remains contradictory and ‘confusing’, with a large – and unresolved – discrepancy between small-to-moderate effect sizes demonstrated on laboratory-based EF tasks and large effect sizes on questionnaire-based everyday EF measures. We sought to understand this mismatch between ‘lab and life’ by inviting 12 autistic adolescents (12–19 years) and their mothers (n = 7) to convey their views and perspectives about their own, or their child’s, EF skills as they transition to adulthood. We followed Braun and Clarke’s method for reflexive thematic analysis using an inductive approach. Participants told us that their EF skills were highly variable, acutely dependent on the context in which they were deployed and potentially related to differences in the way that they process information more broadly. Participants’ reports provided rare insights into their and their children’s executive control – insights that do not straightforwardly map onto traditional theoretical models of EF. Future work on EF needs to take seriously the perspectives and subjectivity of autistic people themselves, including by triangulating quantitative, objective assessments with qualitative, subjective reports in complementary (controlled, uncontrolled) settings.

Individuals diagnosed with autism spectrum disorder (ASD) are more likely to have suicidal thoughts and behaviors. However, little research delineates the temporal and mechanistic associations between potential risk factors and suicidality in autistic individuals. We assessed 129 autistic and 121 age-matched and sex-assigned-at-birth-matched typically developing (TD) children and youth at baseline and follow-up. We evaluated internalizing/externalizing problems, bullying experiences, and three executive function tasks at a mean baseline age of 13.4 years (standard deviation: 4.2 years). After an average of 5.8 years (standard deviation: 1.7 years), we evaluated their suicidal thoughts and behaviors. The experiences of being bullied partially mediated the temporal relationship between pre-existing ASD and later-reported suicidal thoughts. Several cognitive flexibility and sustained attention indices mediated the temporal relationship between pre-existing ASD and later-reported suicidal thoughts. A multiple mediation model confirmed that bullying victimization and cognitive flexibility jointly mediated the temporal relationship between ASD and suicidal thoughts. Better cognitive flexibility and experiences of bullying victimization in autistic children/youth were both associated with higher risks of later-reported suicidal thoughts in adolescence/adulthood. School bullying-prevention programs and tailored clinical support for autistic youth with better cognitive flexibility are warranted for personalized suicide prevention for the autistic population.

In low-resource settings, non-profit organisations play an essential role in providing services and support for families with young children with autism. However, resource constraints limit access to quality training in evidence-based interventions. Web-based training may help fill this gap. This study examined the feasibility, acceptability and appropriateness of the web-based Autism Navigator^® JumpStart to Coaching in Everyday Activities course for 26 non-profit organisation providers (10 specialists and 16 non-specialists) in South Africa. Quantitative and qualitative methods were used including a post-training survey. Sixteen providers (62%) completed the course over an average period of 5.58 months, with many completing the course during lockdown restrictions, suggesting time as a barrier to course completion. No provider characteristics were related to attrition, nor to the time taken to complete the course. Better English proficiency, higher education levels and more positive attitudes to implementing an evidence-based intervention were associated with the number of attempts needed to pass some learner assessments, and to perceptions of course feasibility, acceptability, and appropriateness. Adaptations in the training delivery (using a group format and local group conference calls) and inclusion of South African video clips were identified as potential facilitators to acceptability and appropriateness.

Autism has been associated with increased mortality risk among adult populations, but little is known about the mortality risk among children and young people (0–24 years). We used a 15-year nationwide birth cohort study using linked health and non-health administrative data to estimate the mortality risk among Autistic children and young people in Aotearoa/New Zealand. Time-to-event analysis was used to determine the association between autism and mortality, controlling for sex, age, ethnicity, deprivation and rurality of residence. The participant population included 895,707 children of whom 11,919 (1.4%) were identified as Autistic. Autism was associated with a significantly higher mortality risk (hazard ratio = 2.35; 95% confidence interval = 1.80–3.06) compared to the general population. In addition, using stratified analyses, we found that this risk was significantly higher among females (hazard ratio = 5.40; 95% confidence interval = 3.42–8.52) compared to males (hazard ratio = 1.82; 95% confidence interval = 1.32–2.52). We also determined that among Autistic young people, mortality risk was significantly higher for those with a co-occurring intellectual disability (hazard ratio = 2.02; 95% confidence interval = 1.17–3.46). In this study, autism was associated with higher mortality in children and young people compared to the non-Autistic population. Increased efforts are required to better meet the health needs of this population.

Prospective memory helps us to remember to perform tasks in the future. Prospective memory can be either time or event based. The goal of this study was to determine time- and event-based prospective memory in autistic adults across the life span. Autistic (n = 82) and non-autistic (n = 111) adults, aged between 30 and 86 years, performed the lab-based Amsterdam Breakfast Task, and several naturalistic prospective memory tasks. Preregistered analyses (AsPredicted #34249) were performed using classical frequentist as well as Bayesian statistics. On none of the prospective memory tasks, group differences were observed. Our results show no effect of age on naturalistic tasks, but age did affect our lab-based measure, indicative of the age paradox often described in non-autistic adults. Moreover, we found evidence for a parallel age-related effect of lab-based and naturalistic prospective memory in autistic and non-autistic individuals.

This pilot study investigates the feasibility and assesses the impact of Lactobacillus plantarum PS128 probiotics on the neurological function in Rett syndrome. We conducted a randomized, double-blind, and placebo-controlled trial on Rett syndrome with MECP2 mutation aged between 1 and 50 years in Taiwan. In this pilot study, twice-daily L. plantarum PS128 or placebo was administered for 16 weeks. In addition to feasibility, we also assessed the changes utilizing the Mullen Scales of Early Learning. In total, 36 participants were finally randomized into L. plantarum PS128 (n = 18) or placebo (n = 18) groups. At the end of intervention, the retention rates were 100% for L. plantarum PS128 and 94.44% for placebo, with withdrawal rates of 5.56% for the placebo group. Both groups tolerated well, except for one L. plantarum PS128 participant who reported loose stool. The probiotic group showed a change of 2.19 ± 3.76, while the placebo group had −0.85 ± 5.09 (p = 0.051) in the total age-equivalent scores of Mullen Scales of Early Learning. There was a significant difference in the change of the total score on the Burke–Fahn–Marsden Movement Scale between probiotc group and placebo group (−12.19 ± 12.12 vs −4.59 ± 4.20, p = 0.020). In leg dystonia, the probiotic group exhibited a change of −4.11 ± 5.11 compared with −0.38 ± 1.50 in the placebo group (p = 0.008). Our findings affirm the feasibility of L. plantarum PS128 in Rett syndrome. Future clinical trials are mandatory to further explore its long-term impact on Rett syndrome.

In the past 40 years, accumulating evidence suggested that autistic individuals are at an increased risk of suicidal thoughts and behaviors. This study examined the occurrence of various potential risk factors for lifetime suicidal behavior and suicidal thoughts in the past month in a Dutch cohort (Netherlands Autism Register) of autistic individuals using the Suicidal Behaviors Questionnaire (SBQ-R) and the Suicidal Ideation Attributes Scale (SIDAS). Our results show that the majority (80%) of the initial sample (N = 1164) had thought about or attempted suicide in their lifetime, of which 15% had attempted suicide. In the final sample (n = 421), backward linear regression analyses identified the following predictors for suicidal behavior: psychiatric comorbidity, loneliness, and higher number of autistic traits, F(3, 240) = 21.22, p < 0.001, with R² of 0.21. For suicidal thoughts in the past month, psychiatric comorbidity and a higher number of autistic traits were significant predictors, F(2, 241) = 20.34, p < 0.001, with R² of 0.14. In sum, additional risk markers for suicidal thoughts and behaviors in autistic individuals (e.g. number of autistic traits) should be considered when assessing the suicide risk in autistic individuals. Future research should focus on adapting suicide prevention interventions for autistic individuals, such as addressing loneliness as one of the intervention strategies.

Many autistic youths experience restricted school participation. The present study investigated the influences of youth, family and school factors on autistic youths’ school participation. Parents of 200 Dutch autistic youths (age range: 4–16 years, M_age = 12.23 years, SD_age = 2.93 years) filled in questionnaires in a national survey for autistic individuals, reporting the school participation, age and autistic traits of their child, parents’ education level and self-efficacy for supporting their child’s schoolwork, and the impact of problems their child experienced with the physical and social environments of the school. Multivariate linear regression analysis using imputed data revealed that among the six predictor variables, only the impact of problems autistic youths experienced with the physical environment of school was negatively associated with their school participation. This study provided support for the essential role of the school environment in predicting autistic youths’ school participation, indicating that problematic aspects in the school environment could have a greater impact on autistic youths’ school participation than youth factors or family factors. This highlights the need to create a more accommodating environment at school, where autistic youths can participate easily and comfortably.

Autistic individuals are at significantly higher risk of suicide than non-autistic individuals, with transition-aged youth at potentially the highest risk. While lower executive function (EF) skills have been significantly associated with suicide risk in other clinical samples, the link between EF and suicidality has not yet been examined for autistic individuals. In this study, 183 transition-aged autistic youths completed routine suicide risk assessments and self- and informant-reports of autistic traits, depression, and EF skills. On the P4 Suicide Screener, approximately one-third of the sample (33.3%) endorsed having thoughts of hurting themselves with the intent to end their lives (i.e., suicidal ideation) in their lifetime. In addition to depressive symptoms, EF impairment independently predicted endorsement of suicidal ideation, indicating that both are crucial intervention goals to target suicidal risk for transition-aged youth on the spectrum. Findings suggest that executive functioning, a prevalent area of difficulty and common intervention target for the autistic community, is an important indicator of suicide risk in this population.

Autistic adults experience high rates of unemployment, yet research investigating what predicts employment success produces inconsistent results. By utilising longitudinal person-oriented analyses, this study aimed to identify employment trajectories of autistic adults to better understand what may predict stable autistic employment. Participants were 2449 autistic adults (1077 men, 1352 women, 20 non-binary, M = 42.25 years, SD = 14.24), recruited via the Netherlands Autism Register. Latent class analysis utilising employment status across eight annual waves was used to identify longitudinal employment profiles. Fit indices and the interpretability of results indicated a four-class model best fit the data, with profiles reflecting stable unemployment (n = 1189), stable employment (n = 801), early unemployment increasing in probability of employment (n = 183) and high probability of employment reducing across time to low employment (n = 134). Multinominal analyses suggested that compared to the ‘stable unemployment’ group, membership in the ‘stable employment’ profile was predicted by fewer autistic traits, lower age, male gender, higher education and diagnosis age, and fewer co-occurring conditions. Higher education predicted both other profiles, with lower age and fewer co-occurring conditions predicting membership in the increasing employment class. Taken together, findings highlight the utility of person-oriented approaches in understanding the longitudinal challenges autistic adults experience maintaining employment and identifies key areas of support.

Several validated adult autism symptom screening tools exist; however, there are concerns about the validity of instruments in adults who self-identify and those who have an autism diagnosis. This study evaluated the psychometric properties of the RAADS-R and RAADS-14 across gender, autism diagnosis and autistic identity, and age among a sample of 839 adults. Participants included individuals who reported a prior diagnosis of autism, self-identified as autistic without a diagnosis, were exploring a diagnosis of autism, or neurotypical. Psychometric evaluation included confirmation of scale factor structure, and examination of item performance, including bias and discrimination, across the target sociodemographic characteristics. The RAADS-R and RAADS-14 were found to be psychometrically sound, unidimensional instruments in the present sample without systematic bias by age, diagnosis/identity, or gender. The use of dichotomous response options would improve measure parsimony. Close examination of extant item-level bias is also recommended in the development of new measures. Notably, few psychometric differences between diagnosed and self-identifying individuals were identified. There was a distinction, however, between diagnosed individuals and those exploring autistic identification. Four items representing the consequences of adverse sensory experiences and the hidden rulebook of social interaction were most informative for differentiating autistic individuals from neurotypical.

Self-concept develops during adolescence, but little is known about self-concept in adolescents with autism. This behavioral neuroimaging study investigated (1) self-concept positivity across three domains (academic, physical appearance, and prosocial) and (2) from the perspective of self (direct self-concept) and the perceived perspective of peers (reflected self-concept) in 12- to 16-year-old adolescent males with (n = 35) and without autism (n = 34). These behavioral and neural measures of self-concept were additionally related to autism traits and alexithymia traits across groups. Results showed no general group differences, but more autism traits were related to less positive self-concept ratings in the physical appearance and prosocial domains. More autism traits were also associated with less similarity between direct and reflected prosocial self-concept ratings. Lower self-esteem was additionally explained by alexithymia, specifically the difficulty to identify ones feelings. Participants showed medial prefrontal cortex activation in response to evaluating self-traits in both groups. Region-of-interest analyses revealed that medial prefrontal cortex and right temporal–parietal junction activation were differentially related to alexithymia traits. Together, this study provides a comprehensive understanding of self-concept and self-esteem in adolescents with varying levels autism and alexithymia traits.

The broad autism phenotype is the phenotypic expression of the primary characteristics of autism. However, currently available tests do not agree with the two-domain operationalization of broad autism phenotype or autism, and their internal structure has shown instability across applications. This study presents the Broad Autism Phenotype–International Test, the first such test designed to target a two-domain operationalization in Spain and the United Kingdom. A broad pilot study was conducted in three community samples, two from Spain (ES1, N = 970; ES2, N = 460) and one from the United Kingdom (N = 530). The Broad Autism Phenotype–International Test consists of 20 items distributed into the SOCIAL-BAP and RIRE-BAP dimensions, representing the seven autistic subdomains. Common factor approaches were used to find a simple and invariant factor structure between countries. The Broad Autism Phenotype–International Test presents full metric invariance between two Spanish samples, partial invariance between countries, and adequate omega reliability estimation. Evidence-based results on the relationships of the SOCIAL-BAP and RIRE-BAP to other variables (the Social Responsiveness Scale-2 and the Broad Autism Phenotype Questionnaire) support the interpretation of its scores for the intended uses. The evidence provided in this article shows that the Broad Autism Phenotype–International Test functions adequately compared to other available broad autism phenotype tests, such as the Broad Autism Phenotype Questionnaire.

Feeding challenges are a significant concern for autistic children. Literature has yet to comprehensively characterize feeding challenges for autistic children. Further research is needed to understand predictors of feeding severity and identify opportunities for screening and intervention. The purpose of this study was to characterize the presentation of feeding challenges in autistic children and identify predictors of feeding challenge classification and severity. Data from a national cross-sectional survey of caregivers (n = 427) of autistic children with feeding challenges was used. Feeding challenges were characterized using descriptive statistics. Autism diagnosis age and age of onset of feeding challenges was compared using non-parametric testing. Bi-directional stepwise multivariate linear regression was used to identify significant predictors of feeding challenge scores. Sensory-based feeding challenges were the most common. Age of onset of feeding challenges was significantly lower than the age of autism diagnosis. Early feeding challenges differentially predicted feeding challenge severity and classification scores. The results of this study identify the relationships among early feeding challenges and the severity and classification of feeding challenges in later childhood. Results demonstrate the importance of early monitoring of feeding challenges. These findings can be used to inform the identification of critical timepoints for intervention.

Functioning is a construct capturing how an individual’s engagement in everyday life emerges from the interaction between the individual and their environment. The World Health Organization’s International Classification of Functioning, Disability and Health (ICF) provides a biopsychosocial framework of functioning. Previously, the ICF was adapted for use in autism by developing Core Sets, a selection of ICF codes from the entire classification for specific conditions. Here, we present the first revision of the ICF of the Core sets for autism from a Delphi-like technique, based on evidence from Core Sets validation/linking studies, stakeholder feedback, and the development and piloting of the autism ICF Core Sets platform. Two ICF second-level codes were removed, and 12 were added to the comprehensive autism Core Set. The added codes reflect body functions in various sensory domains, fine hand use, and environmental factors. Changes were extensive for the age-appropriate brief Core Sets where ICF codes from the initial Core Sets were added or removed. The revisions conducted indicate a continued need for regularly updating Core Sets, based on empirical evidence and stakeholder involvement. We recommend the updated Core Sets for future use in autism research and practice in different age groups and contexts.

This study estimated the prevalence of autism spectrum disorder in a 5-year inpatient cohort of children and adolescents diagnosed with first-episode psychosis in two Hong Kong teaching hospitals, and explored the clinical characteristics predicting first-episode psychosis–autism spectrum disorder comorbidity. The autism spectrum disorder diagnoses of 103 patients with first-episode psychosis were confirmed by Autism Diagnostic Interview–Revised. Based on the (1) Diagnostic and Statistical Manual of Mental Disorders (5th ed.) diagnostic checklist and (2) Autism Diagnostic Interview–Revised, three major observations were reported: (1) the prevalence of autism spectrum disorder among children and adolescents with first-episode psychosis was 28.2% (95% confidence interval = (19.7%, 37.9%)); (2) after administering the Autism Diagnostic Interview–Revised, an additional 31.0% of first-episode psychosis patients met the clinical diagnostic cut-off for autism spectrum disorder; and (3) multivariate binary logistic regression analysis showed that first-episode psychosis patients with a comorbid autism spectrum disorder diagnosis were more likely to be a male than a female (adjusted odds ratio = 3.57, 95% confidence interval = (1.29, 9.86), p = 0.014). Adding to the current literature, this study examined first-episode psychosis–autism spectrum disorder comorbidity with a large Chinese, inpatient sample with first-episode psychosis. Consistent with studies conducted overseas, we show that autism spectrum disorder is a common comorbidity among Chinese first-episode psychosis patients. A comprehensive autism spectrum disorder assessment that incorporates both observation-based and parent-report diagnostic tools is warranted for children and adolescents, especially boys, with psychosis.