
The link between neurodevelopmental and psychiatric conditions is increasingly recognized in developmental psychiatry, yet the relationship between Autism Spectrum Disorder (ASD) and Personality Disorders (PDs) remains underexplored in adolescence. Dysfunctional personality traits (DPT) may emerge in individuals with ASD, especially when diagnosis is delayed and comorbidities occur. This study assessed 79 adolescents (mean age = 15.15 ± 1.50; 45.6% females) with ASD without intellectual disability using a multimodal protocol (Autism Diagnostic Observation Schedule-Second Edition [ADOS-2], Autism Diagnostic Interview-Revised [ADI-R], Wechsler Intelligence Scale for Children-Fourth Edition [WISC-IV]/Wechsler Adult Intelligence Scale-Fourth Edition [WAIS-IV], Structured Clinical Interview for DSM-5 Personality Disorders [SCID-5-PD], Kiddie Schedule for Affective Disorders and Schizophrenia-Present and Lifetime Version [K-SADS-PL], standardized questionnaires). Analyses examined associations between DPT, psychiatric comorbidities, clinical severity, and functioning. DPTs were identified in 64.5% of participants, more frequently in females (75.0%) than males (48.9%). A prior ASD diagnosis was missing in 62%, particularly among females (odds ratio [OR] = 2.86, p = .030). Cluster A traits were most common (38.0%), notably Schizoid (22.8%), followed by Cluster B (24.1%), with Borderline traits markedly higher in females (22.2% vs. 2.3%, p = .006) and Cluster C (20.3%). DPTs were associated with lower functioning (Children's Global Assessment Scale [CGAS], p = .037) and higher clinical severity (Clinical Global Impression [CGI], p < .019), also after False Discovery Rate (FDR) correction. Findings indicate that DPTs are highly prevalent yet often unrecognized in adolescents with ASD and are associated with greater comorbidity and poorer psychosocial outcomes. Early, developmentally informed assessment is crucial to identify risks and guide tailored interventions.Lay AbstractAutism Spectrum Disorder (ASD) is a neurodevelopmental condition that affects social communication, behavior, and sensory processing. Some autistic adolescents may also show emerging maladaptive personality traits or early features of personality pathology. However, the relationship between ASD and personality disorders has been studied far less than other mental health conditions, especially during adolescence, a key developmental stage. This study included 79 adolescents with ASD without intellectual disability, with an average age of 15 years. Nearly half of the participants were female. Each adolescent completed a comprehensive clinical assessment, including standardized tools for autism diagnosis, psychiatric diagnostic interviews, cognitive testing, and questionnaires on emotional and behavioral functioning. We found that almost two-thirds of participants showed dysfunctional personality traits (DPTs). These traits were more common in females than males. In addition, many adolescents had not received an autism diagnosis before entering the study, and missed or delayed diagnosis was especially frequent among females. This is consistent with growing evidence that autism in girls may be less easily recognized, particularly when symptoms are masked or present differently from traditional expectations. The most common personality patterns involved social withdrawal, emotional detachment, and limited interest in close relationships. Other adolescents showed traits linked to emotional dysregulation, impulsivity, anxiety, perfectionism, or a strong need for control. Adolescents with DPTs also showed greater overall clinical severity and lower psychosocial functioning in everyday life, including difficulties with peers, family relationships, and school adjustment. These findings suggest that emerging personality pathology is common but often overlooked in autistic adolescents. If autism is identified late, emotional and interpersonal difficulties may become more complex over time. Clinicians should assess autistic traits, co-occurring psychiatric symptoms, and maladaptive personality features together, using a developmentally informed approach. Earlier and more accurate recognition may support personalized interventions, reduce distress, and improve outcomes during the transition to adulthood.
Telemedicine is reshaping how early autism detection can be delivered, particularly in resource-limited settings. Yet, most existing tele-assessment tools were developed in Western contexts, limiting their cultural applicability. To address this gap, we evaluated the Social Communication Scale (SCS), a brief video-based tool, for telemedicine-supported screening in Chinese toddlers. A total of 170 Chinese toddlers aged 16 to 30 months were recruited. Parent-child interaction videos were recorded at home and subsequently coded using the SCS scheme. Autism likelihood (Elevated vs. Low) was defined using the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2) classifications. Reliability and validity were evaluated. Screening accuracy was evaluated using total-score cutoff, logistic regression, and Random Forest (RF) models. The SCS demonstrated good inter-rater reliability (intraclass correlation coefficient [ICC] = 0.87) and moderate convergent validity with ADOS-2 and parent-reported measures of socialization and communication. Both logistic regression and RF outperformed the total-score approach, with RF yielding more balanced performance across metrics. Including demographic variables further improved RF classification performance (area under the receiver operating characteristic curve [AUC] = 0.91; sensitivity = 0.91; specificity = 0.91). The SCS demonstrates potential as a telemedicine-supported screening tool for early autism identification. Further validation in independent samples and against clinical diagnoses is needed to establish its generalizability and diagnostic accuracy.Lay AbstractTelemedicine is changing how early autism detection can be delivered, particularly in areas where specialist services are difficult to access. Telemedicine refers to the use of the internet and other digital technologies to provide health care remotely. Although several telemedicine tools for autism screening and diagnosis have shown promising results, most were developed and tested in Western countries and may not work equally well in different cultural settings. In this study, we evaluated a telemedicine tool called the Social Communication Scale (SCS) in 170 Chinese toddlers aged 16 to 30 months. A short video of a parent and child playing naturally together at home or in another familiar setting was recorded. Trained coders then reviewed the videos and assessed the child's early social communication behaviors associated with autism. The SCS was able to distinguish between toddlers identified by the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2) as having an elevated or low likelihood of autism. Using artificial intelligence (machine learning) alongside the SCS further improved its accuracy. These findings suggest that the SCS could become a useful addition to early autism screening, particularly in places where specialist services are limited. With further testing in larger and more diverse groups of children, this approach could help more families access earlier assessment and support.
Neural oscillations and traveling waves play a crucial role in cognition. In scalp electroencephalography (EEG), waves typically travel along the anterior-posterior axis: forward waves (occipital-to-frontal) predominate during sensory stimulation, while backward waves (frontal-to-occipital) emerge during rest and top-down modulation. Within the predictive coding framework, backward waves reflect predictive signals, whereas forward waves convey sensory processes and prediction errors. In this study, we investigated traveling wave dynamics during a visual entrainment task in non-autistic and autistic adults. Our results show an increase in backward waves during rhythmic visual stimulation in the non-autistic group, consistent with enhanced top-down predictions. Notably, we observed the opposite pattern in the autism group, characterized by a pronounced increase in forward waves at the entrained frequency (ω2 = 0.132). These results align with predictive coding accounts of autistic perception, which hypothesize a difference in balance between predictions and sensory evidence. Specifically, an increase in forward waves may reflect a bias toward sensory signaling over predictive feedback, due to atypical hierarchical communication across brain regions. Together, our findings shed new light on the oscillatory dynamics involved in visual entrainment in non-autistic adults and provide novel evidence in favor of predictive coding accounts of autistic perception.Lay AbstractThe brain continuously processes information by combining incoming sensory signals with prior expectations about the environment. According to predictive coding theories, perception depends on a balance between these two processes: the brain generates predictions about what is likely to happen and then updates those predictions when incoming sensory information does not match expectations. In autism, several theories suggest that this balance may be atypical, with perception relying more strongly on sensory input and less on prior predictions. One way to study how the brain communicates during perception is through 'traveling waves', patterns of rhythmic brain activity that move across the cortex over time. These waves can be measured noninvasively using electroencephalography (EEG). In visual tasks, waves traveling from the back of the brain toward the front are generally linked to the processing of sensory information, whereas waves traveling from the front toward the back are thought to reflect top-down signals such as predictions, expectations, and attentional control. In this study, we investigated traveling brain waves in autistic and non-autistic adults during a visual entrainment task, in which participants viewed rhythmic visual stimulation. We found that non-autistic participants showed an increase in backward traveling waves during stimulation, consistent with stronger predictive or top-down processing. In contrast, autistic participants showed the opposite pattern, with a marked increase in forward traveling waves at the frequency of the visual stimulation. This suggests a greater weighting of incoming sensory signals relative to predictive feedback in autism.
The Social Responsiveness Scale (SRS) is widely used in autism clinical trials to assess treatment effects on core symptoms. However, its minimal clinically important difference (MCID) remains undefined, limiting meaningful interpretation of treatment efficacy. This study pooled data from four clinical trials (542 observations from 319 autistic children, aged 4-10 years) to estimate an anchor-based MCID. Using the Clinical Global Impression-Improvement (CGI-I) scale as an anchor, we employed linear mixed-effects models to estimate MCID, defined as the between-group difference between participants reporting minimal improvement versus no change. We tested interactions among baseline SRS score and clinical characteristics. To complement the anchor-based approach, we also incorporated distribution-based MCID estimates using data from 1,405 autistic children (aged 4-10 years) drawn from an autism registry. We found that MCID depended on baseline SRS score, described by the formula MCID = 10.33 - 0.18 × (baseline SRS score). This translates to MCIDs of 5.87 and 9.47 for baseline SRS scores of 90 and 110, respectively. No significant interactions were found with sex, age, or co-occurring intellectual disability/developmental delay. Distribution-based estimates aligned closely with anchor-based findings. These estimates offer a crucial benchmark for interpreting treatment outcomes in autism trials.Lay AbstractThe Social Responsiveness Scale (SRS) is widely used to assess core symptoms in autistic individuals; however, its minimal clinically important difference remains undefined, limiting clinicians' ability to distinguish meaningful changes from random variations. By analyzing data from over 300 autistic children aged 4 to 10 years across multiple clinical trials and over 1,000 from an autism registry, we showed that the threshold for meaningful clinical improvement varies systematically with baseline SRS score. These findings provide critical benchmarks for interpreting treatment outcomes in clinical practice and autism research.
There are few appropriate screening tools for mental health in autistic people, particularly for individuals with co-occurring intellectual disabilities. A specially developed screening tool for this population, the Psychopathology in Autism Checklist (PAC), has shown acceptable psychometric properties. However, a recent study showed that the subscale structure of the PAC was not in line with its underlying factor structure. The current study aimed to examine the screening properties of a restructuring of the PAC items in line with its factor structure, resulting in a revised version of the PAC, the PAC-Revised (PAC-R). Cut-offs for the PAC-R subscales were identified in a high-risk sample of autistic adults and older adolescents with intellectual disabilities who had been referred for mental health assessment (n = 182; Sample 1). The psychometric properties of these cut-offs and the statistical fit of the subscales were investigated in this sample, as well as in a low-risk sample of autistic children and adolescents (n = 197; Sample 2). This revised version of the PAC, referred to as the PAC-R and comprising five subscales (obsessive-compulsive disorder, psychosis, anxiety, depression, aggression/self-injurious behaviours) and an "any mental health disorder" index, appeared to retain or improve on the screening properties of the original PAC in Sample 1. Similar findings were made for the anxiety and depression subscales and the "any mental health disorder" index in Sample 2. Statistical fit of the model was acceptable across both samples. These findings indicate that the PAC-R is an applicable mental health screening tool for autistic adults with intellectual disabilities, as well as for anxiety and depression in autistic children and adolescents with varied intellectual functioning.Lay AbstractDespite autistic people being at increased risk of co-occurring mental health disorders, there are few assessment tools developed specifically for the identification of mental health disorders in autistic people. This lack of available tools is especially problematic for autistic individuals with co-occurring intellectual disabilities, who may have difficulties answering questions about potential mental health symptoms, or may display symptoms of mental health disorder in atypical ways. The Psychopathology in Autism Checklist (PAC) has previously been rated as a promising tool for this population. However, a recent finding suggested that the items of the PAC do not seem to be grouping in the way it was presumed when the PAC was first developed. The current study describes the revision of the PAC into the PAC-Revised (PAC-R) and its validation across two different samples. These samples included a high-risk sample for mental health disorder, autistic adults and older adolescents with co-occurring intellectual disabilities referred for mental health assessment, and a lower-risk sample for mental health disorder, autistic children and adolescents referred for initial autism diagnostic assessment. Across both samples, the PAC-R appeared to retain or improve on the properties of the original PAC as a screening tool. In addition, the subscale structure of the PAC-R provided an improved fit to the data with regard to the grouping of the items. In conclusion, the PAC-R appears to be a promising measure for screening for mental health disorders in autistic individuals. However, comprehensive and multimethod assessments remain necessary for making an accurate mental health diagnosis, as the PAC-R is intended for screening purposes only.
Retrieval practice enhances learning and is most effective when feedback is provided. Despite robust evidence that retrieval practice and post-retrieval feedback benefit numerous clinical populations, these techniques have not been studied in autism. In two experiments, we measured retrieval practice and post-retrieval feedback effects on associative memory in autistic and non-autistic adults residing in the United States. Participants attempted to memorize semantically unrelated word pairs, which were then reviewed during a practice phase consisting of retrieval practice with and without feedback. In Experiment 1, word pairs were presented to participants (40 autistic; 40 non-autistic) auditorily. In Experiment 2, stimuli were presented visually and restudy trials were added to the practice phase. Additionally, feedback for retrieval practice trials was manipulated between-subjects (80 participants per group) and a four-alternative recognition test was used in the practice phase. In both experiments, the testing phase consisted of cued recall. Both experiments yielded benefits of feedback following initial retrieval practice across groups. In addition, Experiment 2 demonstrated that both groups benefited from retrieval practice compared to restudy, even without feedback. Our results suggest that the well-documented effects of retrieval practice, particularly in concert with post-retrieval feedback, extend to support learning among autistic as well as non-autistic individuals.Lay AbstractEvery autistic person has their own unique sensory, perceptual, and social experiences that impact learning in different ways. Although many autistic learners have average or above-average IQ, individuals with a diagnosis of autism have an increased likelihood of co-occurring learning disabilities and episodic memory difficulties. These memory-related challenges make it especially important to identify strategies that can support learning in autistic populations. Retrieval practice may be one such strategy, which involves testing oneself on previously learned information. Notably, retrieval practice supports learning among many clinical populations who experience memory and learning difficulties, yet it has not been investigated among autistic learners. This study measured the effects of retrieval practice and post-retrieval feedback among autistic and non-autistic adults (40 per group in Experiment 1; 80 per group in Experiment 2) residing in the United States. The task was divided into three sections. First, participants completed a "learning" block where they attempted to memorize unrelated word pairings (e.g., typing flower). Second was a "practice" block, in which they reviewed the recently learned word pairs. Practice trials consisted of retrieval practice with feedback, retrieval practice without feedback, and restudy. In restudy trials, participants reviewed the full word pair (e.g., typing flower) and selected the second word (e.g., flower) among a list of three similar words (e.g., blossom, bud, bloom). In retrieval practice trials, participants were given the first word (e.g., typing) and attempted to remember its corresponding word (e.g., flower). In feedback trials, after participants made their response, they were presented with the full word pair (e.g., typing flower) regardless of their accuracy. In the third and final "testing" block, participants' memory for word pairs was tested once more. This allowed us to compare the effect of retrieval practice with feedback, retrieval practice without feedback, and restudying on final test performance. In addition, we measured the generalizability of the testing effect in different learning contexts (listening to word pairs in Experiment 1; reading word pairs in Experiment 2) and retrieval practice formats (cued recall in Experiment 1; multiple choice in Experiment 2). In both experiments, the benefits of feedback following retrieval practice were evident, and retrieval practice was a more effective learning strategy than restudying word pairs. These outcomes were present in autistic and non-autistic learners alike. This study is the first to demonstrate that retrieval practice with feedback promotes learning in autistic adults. It is well-documented that autistic individuals face suboptimal educational and vocational outcomes compared to their non-autistic peers; thus, strategies that support learning are important to study. These findings contribute to a large body of existing research affirming retrieval practice as a flexible learning strategy that is most effective when accompanied by feedback and may have the potential to improve outcomes for autistic learners.
Emotion dysregulation (ED) is defined as difficulty regulating emotions in response to activating situations, and subsequent difficulty choosing an environmentally appropriate strategy to modulate one’s emotions. Despite ED being identified as a transdiagnostic construct, little research has examined the links to constructs like social communication and interaction (SCI) and restricted and repetitive behaviors (RRBs). SCIs and RRBs are core components of neurodevelopmental conditions like autism, as well as other mental health conditions more broadly. This article sought to examine the effects of emotional dysphoria and emotional reactivity on SCI and RRBs. Caregivers of 99 youth (64 autistic) ages 6 to 17 completed questionnaires about their child’s ED, SCI, and RRBs. Path models were used to examine ED’s impact on SCI difficulties and RRBs. Results suggest that both SCI and RRBs are affected by ED dysphoria and reactivity, with some differences across autistic and non-autistic groups. These findings can inform treatments for medication management and intervention planning for different profiles of ED in both autistic and non-autistic youth. Lay Abstract Many youth experience struggle with managing their emotions, which is sometimes called emotion dysregulation. Some youth, particularly autistic youth, also experience difficulties with social communication and present with repetitive or restrictive behaviors and interests. However, research has not closely examined how emotional difficulties might be connected to these specific behaviors. This study looked at two distinct types of emotion dysregulation: persistent low or distressed mood (emotional dysphoria) and intense emotional reactions (emotional reactivity). Caregivers of 99 youth aged 6 to 17, including 63 autistic youth, answered questions about child’s emotion regulation, social communication, and repetitive behaviors. The findings show how both types of emotion dysregulation related to greater challenges with social communication and repetitive behaviors, and how there were some differences in how these patterns appear between autistic and non-autistic youth. These findings suggest that addressing emotional difficulties could be an important aspect of supporting youth. Clinicians may benefit from identifying which type of emotional dysregulation a youth experiences to help tailor intervention approaches more effectively for each individual.
Autistic individuals are at increased risk of developing mental health difficulties. Self-esteem has been found to be a significant indicator of mental health in the general population yet remains underexplored in autistic adolescents. This review aimed to explore rates of low self-esteem in autistic versus non-autistic adolescents (10-19 years of age) and examine the relationship between self-esteem and mental health symptomatology. A comprehensive literature search was conducted across four databases to identify relevant studies published until March 2025. The systematic review included 30 studies of self-esteem in autistic adolescents, including 15 studies with a non-autistic comparison group, and 16 studies with measures of both self-esteem and mental health. Autistic adolescents reported significantly lower levels of self-esteem compared with non-autistic adolescents, with a moderate weighted pooled effect size (g = -0.47). Group differences were maintained when considering measure variance in self-esteem tools but observed to be greater when using the Self-Perception Profile (g = -0.55) in contrast to the Rosenberg Self-Esteem Scale (g = -0.33). Lower self-esteem was associated with greater depressive symptomatology in autistic adolescents, with large effect (r = -.59). These findings highlight the need for targeted self-esteem interventions in autistic adolescents as a potential means to address co-occurring mental health difficulties.Lay AbstractAutistic adolescents are more likely to experience mental health difficulties than their non-autistic peers. One factor that may influence mental health is self-esteem, which refers to how positively or negatively a person views themselves. This review looked at how self-esteem differs between autistic and non-autistic adolescents, and whether low self-esteem is linked to mental health problems such as depression and anxiety. The review included 30 studies, some of which compared self-esteem levels between autistic and non-autistic adolescents and others explored how self-esteem relates to mental health symptoms. The findings showed that autistic adolescents tend to have lower self-esteem than non-autistic adolescents. In addition, lower self-esteem was linked to higher levels of depression in autistic adolescents. These results suggest that supporting self-esteem in autistic adolescents may be an important way to help improve mental health difficulties. The studies in this review included mainly male participants and used different ways to measure self-esteem and mental health, so more research is needed to better understand these relationships and how best to support a diverse range of autistic adolescents.
In existing literature, an Autistic child's "externalising behaviour" (e.g., aggression, defiance) is often associated with poor parental mental health outcomes. Yet few studies have considered the extent and nature of the impact of a child's harmful behaviours (physical harm to self, others, and property) on parents qualitatively. Here, we examined how Autistic and non-autistic parents conceptualise their Autistic children's harmful behaviours, and the impact of such behaviours on parents. We analysed 39 Autistic and non-autistic parent interviews using reflexive thematic analysis, from which we identified four themes. Theme 1 encompassed parents' experiences of their children's harmful behaviours. Theme 2 captured parents' explanations for their children's harmful behaviours, which they understood as indicating intense distress. In Theme 3, parents reflected on their responses to periods of crisis, during which they prioritised safety but acknowledged a systemic lack of support hindered their efforts. Finally, Theme 4 describes the detrimental impacts on parent mental health, including feelings of helplessness, grief, guilt, and fear for the future. We show that it is imperative to more openly discuss child harmful behaviours in neuroaffirming ways, to develop responsive and appropriate parental and familial supports, which acknowledge the role of guilt and trauma in parental mental health.Lay AbstractLots of research suggests that an Autistic child's so-called "externalising behaviour" (like aggression or defiance) has a negative impact on that child's parents' mental health. But, so far, very few studies have talked directly to parents about why and how they experience distress because of their child's externalising behaviours. In this study, we interviewed 39 Autistic and non-Autistic parents of Autistic children, to better understand their experiences of specific externalising behaviours. For this study, we were particularly interested in children's "harmful behaviours," which we defined as violence towards self, others, and/or property. We wanted parents to tell us in their own words what their experiences of such harmful behaviours were, how they understood these periods of crisis, what they did to respond to their children's harmful behaviours, and what they felt about the behaviours. When we analysed parents' responses, we came up with four main ideas or "themes." Parents saw harmful behaviours as a combination of child self-harm, suicidal behaviour, and physical violence to their parents, siblings, and property (Theme 1). But parents did not necessarily blame their child, instead understanding that their child's behaviour was likely an indication of intense or extreme distress or dysregulation (Theme 2). Parents wanted to keep their whole family safe, but they found they had limited options to do this, and they felt there was little or no support to help them during crises (Theme 3). Unfortunately, parents expressed lots of different emotions, like helplessness, grief, guilt, and fear, as a result of their child's harmful behaviours (Theme 4). We need to understand better what is happening in families, how they are responding, and what support they need to cope so that we can help families who are experiencing these kinds of crises. This article addresses these questions.
Perception of pain can be altered by one's expectations of that pain, producing well-known phenomena such as placebo effects. It has been suggested that perceptual inference functions differently in autism, with perception weighted towards bottom-up sensory evidence rather than top-down expectations. This account would predict reduced placebo effects in autism. However, research also indicates that atypical interoception (perception of bodily sensations) in autism may be better explained by co-occurring alexithymia. This latter finding suggests that any differences in perceptual inference in autism, at least within the interoceptive domain, may be a product of co-occurring alexithymia. We conducted a study in London and Oxford, England, using a placebo hypoalgesia paradigm to assess perceptual inferences in autism and alexithymia. This paradigm permits manipulation of expectations (concerning the magnitude of pain relief) while measuring individual differences in the perception of stimuli (perceived pain). We investigated whether the magnitude of the placebo effect could be explained by autistic and/or alexithymic traits. Ninety-six adults, including autistic people (n = 28), alexithymic people (n = 25), and non-autistic, non-alexithymic people (n = 55) participated in the study. Results showed that alexithymia and trait anxiety were reliable predictors of the magnitude of the placebo effect, but any effect of autism was weaker and unreliable. Results suggest that atypical interoception in alexithymia may explain differences previously thought to relate to autism.Lay AbstractPerception of pain can be altered by how one expects that pain to feel, producing well-known phenomena such as placebo effects. Placebo effects occur when a painful sensation is experienced as less painful than it otherwise would be, simply because we expect it to be less painful. Recently, researchers have suggested that the effect of expectation on how we perceive the world is different among the autistic population compared to non-autistic people. We therefore aimed to investigate whether this is the case for pain perception.We conducted a study where we were able to change people's expectations about how painful an electric shock would be, to see whether this would affect pain perception, and see whether the effect of expectations differs between autistic and non-autistic people. We were also interested in looking at the effect of alexithymia (difficulties in identifying and describing one's own emotions), which is suggested to affect pain perception and is prevalent in the autistic population.We found that alexithymia and anxiety predicted how susceptible someone was to the placebo effect (i.e., how much expecting a shock would not be painful affected one's pain perception). These effects were greater than any effect of autism, which was small and unreliable. This study adds to previous research which shows that many of the differences between autistic people and non-autistic people in terms of perceiving bodily sensations, including pain, may be better explained by alexithymia than autism.
Sleep-wake regularity is an emerging dimension of sleep health, yet its association with autism spectrum disorder (ASD) remains understudied in nationally representative samples, particularly across distinct components of sleep timing. Using parent-reported data from 11,462 U.S. children aged 5-17 years in the 2022 and 2024 National Health Interview Survey, this study examined associations between ASD diagnosis and irregular bedtime and wake-up timing, including differences by age group. Multivariable logistic regression models were adjusted for sociodemographic characteristics, family context, daytime fatigue, and mental health indicators, with survey weights applied to account for the complex sampling design. In pooled analyses, ASD was associated with lower odds of irregular bedtime (adjusted odds ratio [aOR] = 0.64, 95% CI: 0.43-0.95) but higher odds of irregular wake-up times (aOR = 1.60, 95% CI: 1.01-2.56). Age-stratified analyses showed that the association with irregular wake-up timing remained in children (aOR = 2.27, 95% CI: 1.14-4.51) but not in adolescents, while no association was observed for bedtime in either age group. As one of the first nationally representative analyses distinguishing bedtime and wake-up regularity in ASD, these findings suggest that associations differ by timing component and age group, with wake-up timing representing a potential intervention target.Lay abstractMany children do not go to bed or wake up at the same time every day, which can affect their health and daily functioning. Sleep problems are especially common among autistic children, but most research has focused on how long they sleep or how well they sleep, rather than whether their sleep schedules are consistent. In this study, we used national survey data from the United States to examine whether autistic children differ from other children in how regularly they go to bed and wake up. Using data from the 2022 and 2024 National Health Interview Survey, we analyzed parent-reported information from over 11,000 children aged 5 to 17 years. Our results showed that autistic children were more likely to have consistent bedtimes but also more likely to have irregular wake-up times than children who were not autistic. This pattern remained after accounting for factors such as daytime tiredness and emotional well-being. These findings suggest that sleep challenges in autistic children may vary by time of day and developmental stage. In particular, maintaining consistent wake-up times may be more difficult for younger autistic children. Focusing on wake-up timing may therefore be a useful target for supporting sleep health in this group. Further research is needed to understand the reasons behind these differences and to identify effective ways to promote consistent sleep schedules.
Waiting lists for an autism evaluation delay timely diagnosis and entry into autism-specific early intervention. To solve this crisis, our field must increase capacity by embracing efficient diagnostic processes. Traditional diagnostic pathways involve complex evaluations and rely on a highly trained but limited pool of specialists, which elongate wait times. Evidence suggests that emerging approaches, including telehealth assessments, primary care diagnosis, and tiered models, reduce barriers. We guide readers through five core issues critical to updating the standard of care for early autism assessment: (1) What are the consequences of maintaining the status quo? (2) What do families prioritize? (3) What evidence supports efficient diagnostic models? (4) What are the consequences of reducing accuracy? and (5) What level of assessment depth is needed to inform action? Our team contends that the critical advantages of adopting efficient service delivery models far outweigh the disadvantages. Collaboration across disciplines, and trust in families' insights, will help build capacity. We conclude with actionable recommendations for clinicians and policymakers in support of adopting these models.Lay AbstractThe growing demand for autism diagnostic services has outpaced available resources. This creates significant delays in first diagnosis and entry into early intervention services (early diagnosis and intervention improve outcomes). Expert diagnosticians in the field have debated - and tested - streamlined and flexible alternative diagnostic processes to speed up access to services; we believe that the advantages of such approaches outweigh the disadvantages, and that evidence supports updating our current standards.
Autism is commonly conceptualized in research, policy, and clinical contexts as an individual condition defined by diagnostic criteria and functional impairment. While these frameworks shape access to services, they often obscure relational, cultural, and contextual meanings of autism, particularly within Indigenous communities. This article reports findings from an exploratory phenomenographic study examining how autism is understood among five Citizen Potawatomi Nation participants. Guided by Indigenous Knowledge Systems, decolonial leadership, relational epistemologies, and a neurodiversity-affirming paradigm, the study examined qualitative variation in meaning-making rather than consensus or generalizability. Semi-structured interviews were conducted with Autistic adults, parents of Autistic children, and a tribal Knowledge Keeper. Analysis followed Åkerlind's interpretive phenomenographic approach, resulting in five categories of description illustrating coexisting understandings of autism: system-managed difference, intergenerational family patterning, natural human variation, relational identity and belonging, and spiritual gift with purpose. These categories were organized into an outcome space reflecting a relational ecology of meaning. Findings demonstrate that autism is understood within Potawatomi contexts through intergenerational continuity, relational belonging, and culturally grounded purpose, challenging deficit-based and universalizing frameworks. The study highlights the value of phenomenography for Indigenous autism research and informs future Nation-engaged, relationally accountable inquiry.Lay AbstractAutism is often described in medical, educational, and policy settings as a problem located within an individual. This study explored how five Citizen Potawatomi Nation participants understand autism, including Autistic adults, parents of Autistic children, and a tribal Knowledge Keeper. Rather than seeking one shared definition, the study examined different ways autism is understood based on lived experience, relationships, and cultural teachings. Participants described autism as shaped by health care and school systems, as a pattern across families and generations, as a natural part of human diversity, as part of identity and belonging, and as a spiritually meaningful difference with cultural purpose. The findings suggest that dominant Western frameworks may miss relational, cultural, and spiritual meanings that matter in Potawatomi contexts. Recognizing these meanings can support respectful research and more responsive approaches to education, health care, and community support.
Caregiver-mediated interventions are widely used to support social communication development in young autistic children. While many such interventions are evidence-informed, limited information exists about their shared and unique elements, making it challenging for caregivers and clinicians to tailor program selection to individual needs and preferences-an essential part of personalized care in autism. This scoping review with content analysis examined 18 commercially available, caregiver-mediated social communication interventions to identify similarities and differences in child skills targeted and caregiver-coached strategies. Data were extracted from program manuals, fidelity tools, published literature, and program websites for eight developmental social pragmatic (DSP) programs and 10 naturalistic developmental behavioral interventions (NDBIs). Programs varied in scope, with some supporting a broad range of child skills and others focusing on specific areas. Across all programs, 70 caregiver-coached strategies were identified, and then thematically grouped into eight categories aligned with the developmental skills the strategies aim to support. Although some strategies were common across all programs, some unique strategies were also identified. In addition, there were notable differences in how these strategies were operationalized despite using similar terminology, underscoring the need for more precise, clearly defined fidelity measures to enable accurate assessment of caregiver implementation and meaningful comparisons across programs. This study lays the groundwork for future research to identify active ingredients of interventions and supports more informed, individualized decision-making in clinical practice.Lay AbstractYoung autistic children may engage with others and communicate in ways that differ from non-autistic peers, and may need support to develop skills to communicate with, and navigate interactions with others. Many programs have been developed for this purpose, with a growing number of programs including caregivers in this process. In programs where caregivers play a primary role, professionals coach them to use certain techniques that can support social communication. Although many such programs exist, we still lack clarity on how these programs are similar or different, making it tough for families to choose among them. To address this gap, we reviewed 18 well-known caregiver-led programs to compare the skills they aim to support children with, and the specific techniques they teach caregivers. We gathered information from program resource materials, published research, and official program websites. We found that some programs focused on supporting a wide range of skills, whereas others targeted only certain developmental areas. In total, we identified 70 distinct caregiver-coached techniques, which we organized into eight categories. Many techniques were common across all programs, but others were unique to specific programs. Even among the shared techniques, there were differences in the way they were practiced, despite using the same strategy name. For example, a technique like "following the child's lead" could look quite different depending on the program. These findings show that having descriptions of how techniques should be used is important to understanding and comparing different programs. Overall, these findings provide families with information about program ingredients and can be used to guide clinicians toward programs that match individuals' needs and wants. This work also paves way for future research exploring how these social communication programs work, and evaluating which techniques are most effective for specific groups of children and families.
Health care and early education systems are common entry points for autism identification and specialized services. However, culturally and linguistically diverse families are less likely to experience timely or positive interactions within these systems. This pilot feasibility study examined implementation outcomes of using non-specialist providers (NSPs) within a community-based non-profit organization to support early service navigation while also promoting caregiver use of evidence-based parenting and self-care strategies. Six multilingual NSPs completed a web-based training and delivered a four-session program, the Family Care Project, to 35 families of children aged 16 months to 5 years for whom there were developmental concerns. Implementation outcomes were assessed using Proctor's taxonomy, including acceptability, feasibility, appropriateness, adoption, penetration, and sustainability. All families completed all four sessions within 5 weeks. NSPs reported high acceptability, feasibility, and appropriateness of the training and caregiver-facing materials; adoption was high, with 95% of planned module content delivered. At the 5-month follow-up, NSPs reported continued program use with additional families, providing evidence of organizational penetration and sustainability. Results suggest that a low-resource, culturally responsive curriculum can be acceptable, feasible, and appropriate for NSP-led delivery in community-based settings and may offer a scalable complement to health care-based navigation models.Lay AbstractMedical professionals and educators are often the first to identify concerns about a child's development and help families seek care. However, families who speak languages other than English or who come from diverse cultural backgrounds may face barriers to accessing this support. This study examined whether trusted community providers, who share language and cultural backgrounds with families but do not have specialized clinical training, can deliver autism-related support within a community-based non-profit organization. Six community-based providers who speak a range of African and Middle Eastern languages completed an online training through the Family Care Project and used this program to support 35 families of young children. Providers reported that the program was easy to use and fit well with the work they already do. All families completed the program within 5 weeks. Six months later, providers had continued delivering the program and had supported an additional 24 families. These findings suggest that a low-cost, community-based program led by trusted providers from the same communities as participating families can support early autism-related service navigation. The Family Care Project may help more families access information, resources, and support early in their child's development.
Health care transition (HCT) is underexplored among autistic adolescents and young adults (AYAs). We explored autistic AYAs' HCT experiences through virtual semi-structured interviews with 19 participants (mean age = 21.4 years; range = 15-25). Data were analyzed using reflexive thematic analysis and interpreted through self-determination theory (SDT). Participants described HCT as marked by increased expectations for independent health care management without commensurate preparation, relational continuity, or structural support. Findings were organized around SDT domains of competence, autonomy, and relatedness, which were interconnected. Gaps in competence constrained autonomy and contributed to stress and care avoidance. Autonomy was negotiated and situational, often supported through ongoing caregiver involvement rather than full independence. Relatedness was undermined by fragmented care, limited continuity, and experiences of being dismissed by providers. Structural factors (transportation, insurance acceptance, provider availability, and rurality) shaped when and how these psychological needs could be met, amplifying transition-related challenges. Autistic AYAs want to take ownership of their care, but successful HCT depends on developmentally scaffolded skill-building, supportive interdependence, and health systems that foster competence, autonomy, and relatedness. Findings highlight the need for autism-responsive HCT models that incorporate gradual preparation, provider training, caregiver-supported autonomy, and structural accommodations, particularly in rural communities.Lay AbstractMoving from pediatric to adult health care can be challenging for autistic adolescents and young adults, especially in rural areas. We interviewed 19 autistic participants ages 15 to 25 to understand their experiences of health care transition. We analyzed interviews to identify themes and organized findings around three needs: feeling capable of managing health care (skills and confidence), having appropriate choice and control, and feeling supported and taken seriously by health care providers. Participants often described being expected to manage appointments, medications, and communication with providers more independently, without enough preparation or clear guidance. Many reported that limited skills or confidence made it harder to take charge of their care and contributed to stress and sometimes avoiding care. Independence was not "all-or-nothing": participants described sharing responsibilities with caregivers in ways that changed across situations, rather than becoming fully independent at once. Participants also described challenges with continuity and relationships such as switching providers, fragmented services, and feeling dismissed, making it harder to feel understood and supported. Practical barriers shaped these experiences, including transportation, whether providers accepted insurance, limited local providers, and rural distance. Overall, participants wanted to take more ownership of their health, but they emphasized the need for step-by-step skill-building, supportive shared responsibility with caregivers, and health care systems that help autistic young people feel capable, in control, and supported, especially in rural communities.
The increase in intervention diversity to improve core difficulties in autism has resulted in the development and proliferation of a variety of measures to assess change. The Clinical Global Impressions (CGI) scale has been recommended for use in pharmacological autism clinical trials to monitor individuals' progress. No specific recommendations have been made for an outcome measure for psychosocial interventions. This review aimed to evaluate available evidence of a use of the CGI scale as an outcome measure in psychosocial interventions for autism characteristics. A systematic search of electronic databases identified 22 primary studies utilising the CGI scale to evaluate change across a range of social, communication and behavioural interventions for autistic people. The lack of consistency in the use of the measure was evident. This applied to the variety of constructs being measured, inconsistent application and scoring methods, which all limited the CGI scale's reliability and validity. Despite the widespread use of the CGI scale in psychosocial clinical trials for autistic people, the lack of standardisation hampers conclusions regarding the evidence of its effectiveness in measuring change. Standardisation of the use of the CGI scale is essential to ensure comprehensive evaluation of interventions.Lay AbstractMany different therapies and supports exist to help autistic people with social, communication, and behavioural differences. To understand whether these interventions are working, researchers need good tools to measure change. One commonly used tool in medical studies is the Clinical Global Impressions (CGI) scale, which helps clinicians rate a person's overall improvement. Although the CGI scale is recommended for autism medication studies, there are no clear guidelines for using it in psychosocial (non-medical) interventions. In this review, we looked at research studies that used the CGI scale to measure change after psychosocial interventions for autistic people. We found 22 studies that used the CGI scale in very different ways. The studies measured a wide range of skills and behaviours, and they often used the CGI scale differently from one another. This inconsistency makes it difficult to trust the results or compare findings across studies. Although the CGI scale is widely used, the lack of standard guidelines means it may not reliably show whether psychosocial interventions are effective. To improve research and ensure that interventions are properly evaluated, it is important to develop clear, standardised ways of using the CGI scale.
Special interests are a highly prevalent feature of autism spectrum conditions (ASC) and have long been described primarily from a deficit-oriented perspective. More recent work has pointed to their potential as psychological resources, yet systematic evidence and direct comparisons with non-autistic groups remain limited. The present study examined the significance of special interests for well-being, self-related aspects and emotion regulation in autistic adults, as well as negative consequences and stigma. Furthermore, we directly compared the likelihood of engaging in special interests versus seeking social contact across a range of emotional contexts. A total of 182 participants (60 autistic and 122 non-autistic) completed an online survey on multiple aspects of their (special) interests and measures of social anxiety and self-esteem. Autistic individuals reported a stronger role of special interests in emotion regulation and as a source of learning and knowledge, while also experiencing greater stigma and negative consequences compared with non-autistic participants. Autistic participants further showed a higher likelihood of relying on their interests as a coping strategy in negative and exhausting situations, highlighting their particular relevance for emotion regulation. Our findings emphasize the unique functions of special interests in autism and point to their therapeutic potential as adaptive resources.Lay AbstractMany autistic people have special interests - topics or activities they pursue with great passion. We asked autistic and non-autistic adults how meaningful their interests are and how they use them in different emotional situations. Autistic people reported that interests are especially helpful for coping with stress and regulating emotions, and that they are an important source of learning and knowledge. On the other hand, autistic individuals also experienced more stigma and negative reactions from others than non-autistic individuals. Our findings show that special interests are an important source of well-being and should be recognized as a valuable resource in autism.