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Quality of life is widely acknowledged as one of the most important outcomes in autism research, but few measures of this construct have been validated for use in autistic people. The goal of the current study was to examine the psychometric properties of the Patient-Reported Outcomes Measurement Information System Global–10, an established self-report measure of health-related quality of life, in a sample of 901 autistic adults (predominantly female and adult-diagnosed) recruited from the Simons Foundation Powering Autism Research for Knowledge cohort. Using an item response theory framework, we performed a comprehensive psychometric evaluation of the Patient-Reported Outcomes Measurement Information System Global–10 in this sample, examining its latent structure, differential item functioning, reliability, and construct validity. After developing an autism-specific measurement model, the Patient-Reported Outcomes Measurement Information System Global–10 demonstrated excellent psychometric properties in the current sample, including excellent model-data fit, high reliability, minimal differential item functioning across subgroups of autistic adults, and an expected pattern of correlations with external variables. Exploratory analyses indicated that lower quality of life was associated with female sex and identified as a sexual/gender minority. A free online score calculator has been created to facilitate the use and interpretation of normed Patient-Reported Outcomes Measurement Information System Global–10 general quality of life latent trait scores for clinical and research applications (available at https://asdmeasures.shinyapps.io/promis_qol ). Lay Abstract Quality of Life an outcome that both researchers and autistic advocates agree is extremely important to consider when implementing services, interventions, and supports for autistic people. However, there has been little research on the topic of how quality of life can best be measured in autistic people or whether existing quality of life questionnaires are appropriate for use in the autistic population. This study aimed to validate an established quality of life measure, the Patient-Reported Outcomes Measurement Information System Global–10, in a large sample of autistic adults recruited online. We created a new way to score the Patient-Reported Outcomes Measurement Information System Global–10 scale and generate a “General quality of life” score specific to autistic adults. This new score performed very well in this sample, showing very little measurement error and relating in expected ways to similar constructs, such as physical health and emotional distress. Exploratory analyses found that lower quality of life was associated with female sex and self-identification as a sexual or gender minority (i.e. LGBTQ + identity). These findings suggest that the new Patient-Reported Outcomes Measurement Information System Global–10 quality of life score is a reliable and valid measure of quality of life in autistic adults, although additional studies are necessary to further explore its measurement properties in other subsets of the autistic population, such as individuals with intellectual disabilities. This measure is freely available for use as an outcome in both research and clinical practice, and an online score calculator is available to support the use of this measure in real-world applications.

Health-related conditions often differ qualitatively or quantitatively between individuals of different birth-assigned sexes and gender identities, and/or with different gendered experiences, requiring tailored care. Studying the moderating and mediating effects of sex-related and gender-related factors on impairment, disability, wellbeing and health is of paramount importance especially for neurodivergent individuals, who are diagnosed with neurodevelopmental conditions with uneven sex/gender distributions. Researchers have become aware of the myriad influences that sex-related and gender-related variables have on the manifestations of neurodevelopmental conditions, and contemporary work has begun to investigate the mechanisms through which these effects are mediated. Here we describe topical concepts of sex and gender science, summarize current knowledge, and discuss research and clinical challenges related to autism, attention-deficit/hyperactivity disorder and other neurodevelopmental conditions. We consider sex and gender in the context of epidemiology, behavioural phenotypes, neurobiology, genetics, endocrinology and neighbouring disciplines. The available evidence supports the view that sex and gender are important contributors to the biological and behavioural variability in neurodevelopmental conditions. Methodological caveats such as frequent conflation of sex and gender constructs, inappropriate measurement of these constructs and under-representation of specific demographic groups (for example, female and gender minority individuals and people with intellectual disabilities) limit the translational potential of research so far. Future research and clinical implementation should integrate sex and gender into next-generation diagnostics, mechanistic investigations and support practices.

Autistic students experience strengths and challenges that can impact their full inclusion in higher education, including stigma. A participatory team of autistic and non-autistic scholars developed an autism and universal design (UD) training. This participatory approach centered the voices of autistic collaborators in training design and evaluation. Ninety-eight educators from 53 institutions across five countries completed assessments before training (pre-tests), 89 completed post-tests (after training), and 82 completed maintenance assessments (a month after post-test). Pre-test autism stigma was heightened among males, educators with less autism knowledge, and those who reported heightened social dominance orientation. Autism knowledge, autism stigma, and attitudes toward UD improved with training. Improvements remained apparent a month after post-test but were somewhat attenuated for knowledge and stigma. To the best of our knowledge, this is the first evidence of maintenance of benefits of an autism training over time. Participants’ main reason for enrolling in the study was to gain a better understanding about neurodiversity. Feedback indicates that this goal was reached by most with the added benefit of gaining understanding about UD. Results suggest that interest in one type of diversity (e.g. autism) can motivate faculty to learn UD-aligned teaching strategies that benefit diverse students more generally. Lay abstract Autistic university students have many strengths. They also go through difficulties that professors may not understand. Professors may not understand what college life is like for autistic students. They might judge autistic students. A team of autistic and non-autistic researchers made a training to help professors understand autistic students better. This training also gave professors ideas to help them teach all of their students. Ninety-eight professors did an online survey before the autism training. They shared how they felt about autism and teaching. Before our training, professors who knew more about autism appreciated autism more. Professors who thought people should be equal and women also appreciated autism more. Then, 89 of the professors did our training and another survey after the training. This helped us see what they learned from the training. They did one more survey a month later. This helped us see what they remembered. Our training helped professors understand and value autism. It also helped them understand how they can teach all students better. The professors remembered a lot of what we taught them. This study shows that a training that autistic people helped make can help professors understand their autistic students better.

High quality science relies upon psychometrically valid and reliable measurement, yet very few Patient Reported Outcome Measures (PROMs) have been developed or thoroughly validated for use with autistic individuals. Based on discussion at the Special Interest Group (SIG) at the 2022 International Society for Autism Research (INSAR) Annual Meeting and collective expertise of the authors, we summarize the current state of autism PROM science. First, we identify current issues in autism PROM research including content and construct operationalization, informant-structure, measure accessibility, and measure validation and generalization. We then enumerate barriers to conducting and disseminating this research, such as a lack of guidance, concerns regarding funding and time, lack of accessible training and professionals with psychometric skills, difficulties collecting large representative samples, and challenges with dissemination. Lastly, we offer future priorities and resources to improve PROMs in autism research including a need to continue to evaluate and develop PROMs for autism using robust methods, prioritize diverse and representative samples, expand the breadth of psychometric properties and techniques, and to consider developing field specific guidelines. We remain extremely optimistic about the future directions of this area of autism research. This work is well positioned to have an immense, positive impact on our scientific understanding of autism and the everyday lives of autistic people and their families.

Somatic symptoms are the most common cause of outpatient medical visits in the general population, yet their presence and severity in individuals on the autism spectrum has rarely been studied. We sought to assess the prevalence, impact, and clinical correlates of 14 commonly reported somatic symptoms in a sample of 290 transition-aged autistic young adults (mean [SD] age: 23.10 [2.38] years, range 18-26; 76.7% diagnosed with autism before age 18) recruited from the Simons Foundation SPARK participant pool. A modified version of the Patient Health Questionnaire-15 was used to assess somatic symptom prevalence/impact, along with measures of depression, anxiety, autistic traits, and quality of life. Somatic symptom burden was much higher in autistic young adults than previously reported in the general population. The most commonly reported current symptoms were fatigue (72.8%), sleep problems (69.0%), and menstrual problems (61.4% of females). Moderate or severe symptom levels were reported by 53.9% of females and 18.75% of males in our cohort, with the odds of females endorsing any given symptom being 2-4 times greater than males. Both individual symptoms and total symptom burden were related to higher levels of depression, anxiety, and autistic traits, along with lower quality of life. Despite little research on this topic previously, somatic symptoms are highly prevalent in autistic young adults, particularly women. Future research is needed to investigate links between somatic symptoms, medical and psychiatric morbidity, and health care utilization in the autistic population. LAY SUMMARY: Somatic symptoms (i.e., physical symptoms such as such as pain, weakness, stomachache, or shortness of breath) are highly prevalent in the general population and account for a large proportion of health care costs. However, few studies have investigated how often these symptoms are reported by autistic adults or their associations with other clinical and demographic variables. Based on self-report data from 290 young autistic adults, we found very high rates of bothersome somatic symptoms in this population, with females endorsing all symptoms at substantially higher rates than males. Somatic symptoms were also associated with worse mental health and quality of life, suggesting that they represent an overlooked contributor to poor health outcomes in the autistic adult population.

Singer et al. (2022) argue that the current lexical shift within autism research towards more neutral terminology hinders accurate scientific description of the wide range of autistic experiences, particularly within clinical and medical contexts. In this Letter to the Editor, we present an examination and criticism of these claims. This letter is authored and co-signed by a diverse group of autistic researchers, scholars, clinicians, and self-advocates with a wide range of clinical presentation and support needs, as well as non-autistic researchers, scholars, clinicians, and loved ones of autistic people.

Evaluative skill is the ability to accurately judge ideas on creativity (or originality), which is a critical component of creativity. Various aspects of creativity have been examined cross-culturally, but little research has focused on evaluative skill. The first goal of this study was to examine the measurement invariance of evaluative skill assessments, which were based on two types of divergent thinking tests (Line Meanings and Uses), between American (n = 341) and Chinese (n = 345) college students. Multi-group confirmatory factor analyses supported a two-factor model based on two types of evaluation tasks, and this model satisfied configural and weak invariance. However, partial strong invariance was satisfied only for the Uses evaluation task. Based on this evidence, our second goal was to explore the differences in evaluative skill between these two groups. Via latent mean comparisons, we found that American participants had better performance on evaluative skill based on the Uses evaluation task than their Chinese counterparts. Taken together, this study is one of the first to examine the cross-cultural differences in evaluative skill between American and Chinese adults. This study offered preliminary results showing some invariance in evaluative skill assessments across cultures and indicating cross-cultural differences in this ability.

Prevalence rates of depression are higher in autistic youth than neurotypical peers, yet the effects of autism spectrum disorder diagnosis and sex on depressive symptom severity remain incompletely understood, particularly in specific age groups. Using the Children’s Depression Inventory, Second Edition, this study explored diagnostic- and sex-based differences in depressive symptom severity in a sample of 212 autistic and neurotypical early adolescents (10:0–13:5 years). Significant group differences were found according to autism spectrum disorder diagnosis [ d = 0.587, 95% confidence interval (0.308, 0.867)] and sex [ d = 0.365, 95% confidence interval (0.089, 0.641)], with more depressive symptoms endorsed in the autism spectrum disorder and female groups. However, the interaction of diagnosis and sex was not significant, suggesting an additive risk of autism spectrum disorder status and female sex. Item-level analyses showed diagnostic differences on nearly half of the CDI-2 items with higher severity in the autism spectrum disorder group (Probability of Superiority range = 0.42–0.65), differences within the sexes, and differences by diagnosis, which persisted when limiting analyses to children with high levels of depressive symptoms. A more nuanced understanding of symptom endorsement and the roles of diagnosis and sex may uncover salient intervention targets for depression in the unique context of autism spectrum disorder. Lay abstract Depression is more common in autistic adolescents than their neurotypical peers, but the effects of diagnosis and sex on the severity and types of depressive symptoms remain unclear. The study explored diagnostic- and sex-based differences in depressive symptoms in 212 autistic and neurotypical early adolescents. Results show that autism spectrum disorder and female may pose elevated risks, and depressive symptoms related to interpersonal problems and negative self-esteem are more frequent in autism spectrum disorder. Autistic males and females endorsed similar severity and type of depressive symptoms, but unique differences emerged when compared to sex-matched neurotypical peers. Exploratory analyses in a clinical subsample of early adolescents with elevated depressive symptoms (Children’s Depression Inventory, Second Edition, Total T-score ⩾60) revealed more endorsement of beliefs of worthlessness in autistic early adolescents. Findings suggest initial intervention targets for treating depression in autistic early adolescents.

In autism spectrum disorder (ASD), medical conditions in infancy could be predictive markers for later ASD diagnosis. In this study, electronic medical records of 579 autistic individuals and 1897 matched controls prior to age 2 were analyzed for potential predictive conditions. Using a novel tool, the relative association of each condition in the autistic group was compared to the control group using logistic regressions across medical records. Generalized convulsive epilepsy, nystagmus, lack of normal physiological development, delayed milestones, and strabismus were more likely in those later diagnosed with ASD while perinatal jaundice was less likely to be associated. Lesser-known conditions, such as strabismus and nystagmus, may point to novel predictive co-occurring condition profiles which could improve screening practices for ASD.

The social validity of autism behavioral intervention has been questioned. Naturalistic Developmental Behavioral Interventions (NDBIs) attempt to address some concerns, but it is unclear whether autistic people consider NDBIs socially valid. Social validity of an NDBI, Pivotal Response Treatment (PRT), was investigated through autistic adults commenting on videos of autistic children receiving PRT. Qualitative coding of responses generated three themes: respect for individuals; assessment of intervention implementation; and socioemotional considerations. Although video brevity limits the scope of the present study's conclusions, participants highlighted PRT components that appeared socially valid (e.g., reinforcing attempts, following the child's lead) and aspects appearing invalid (e.g., overemphasis on spoken language). Therefore, adjustments appear necessary for PRT to be fully acceptable to the autistic community.

Elevated "neural noise" has been advanced as an explanation of autism and autistic sensory experiences. However, functional neuroimaging measures of neural noise may be vulnerable to contamination by recording noise. This study explored variability of electrophysiological responses to tones of different intensities in 127 autistic and 79 typically-developing children aged 2-5 years old. A rigorous data processing pipeline, including advanced visualizations of different signal sources that were maximally independent across different time lags, was used to identify and eliminate putative recording noise. Inter-trial variability was measured using median absolute deviations (MADs) of EEG amplitudes across trials and inter-trial phase coherence (ITPC). ITPC was elevated in autism in the 50 and 60 dB intensity conditions, suggesting diminished (rather than elevated) neural noise in autism, although reduced ITPC to soft 50 dB sounds was associated with increased loudness discomfort. Autistic and non-autistic participants did not differ in MADs, and indeed, the vast majority of the statistical tests examined in this study yielded no significant effects. These results appear inconsistent with the neural noise account.

Background Auditory perceptual abnormalities are common in persons on the autism spectrum. The neurophysiologic underpinnings of these differences have frequently been studied using auditory event-related potentials (ERPs) and event-related magnetic fields (ERFs). However, no study to date has quantitatively synthesized this literature to determine whether early auditory ERP/ERF latencies or amplitudes in autistic persons differ from those of typically developing control subjects. Methods We searched PubMed and ProQuest for studies comparing 1) latencies/amplitudes of P1/M50, N1b, N1c, M100, P2/M200, and/or N2 ERP/ERF components evoked by pure tones and 2) paired-click sensory gating (P1/N1b amplitude suppression) in autistic individuals and typically developing control subjects. Effects were synthesized using Bayesian 3-level meta-analysis. Results In response to pure tones, autistic individuals exhibited prolonged P1/M50 latencies (g = 0.341 [95% credible interval = 0.166, 0.546]), prolonged M100 latencies (g = 0.319 [0.093, 0.550]), reduced N1c amplitudes (g = −0.812 [−1.278, −0.187]), and reduced N2 amplitudes (g = −0.374 [−0.633, −0.179]). There were no practically significant group differences in P2/M200 latencies, N2 latencies, P1/M50 amplitudes, N1b amplitudes, M100 amplitudes, or P2/M200 amplitudes. Paired-click sensory gating was also reduced in autistic individuals (g = −0.389 [−0.619, −0.112]), although this effect was primarily driven by smaller responses to the first click stimulus. Conclusions Relative to typically developing control subjects, autistic individuals demonstrate multiple alterations in early cortical auditory processing of simple stimuli. However, most group differences were modest in size and based on small numbers of heterogeneous studies with variable quality. Future work is necessary to understand whether these neurophysiologic measures can predict clinically meaningful outcomes or serve as stratification biomarkers for the autistic population.

Purpose Hyperacusis is a complex and poorly understood auditory disorder characterized by decreased tolerance to sound at levels that would not trouble most individuals. Recently, it has been suggested that individuals who experience otalgia in response to everyday sounds (termed pain hyperacusis ) may differ clinically from those whose primary symptom is the perception of everyday sounds as excessively loud (termed loudness hyperacusis ). Despite this theoretical distinction, there have been no empirical studies directly comparing these two populations of hyperacusis patients. Method Using data from a multinational patient registry (the Coordination of Rare Diseases at Sanford Registry), we examined self-reported demographics, symptoms, comorbidity, and response to treatment in a sample of 243 adults with hyperacusis, 152 of whom were classified as having pain hyperacusis based on reported symptoms. Bayesian statistical tests were used to investigate both the presence and absence of group differences between patients with loudness and pain hyperacusis. Results Individuals with pain hyperacusis presented with a more severe clinical phenotype, reporting a higher frequency of temporary symptom exacerbations (i.e., “setbacks”), less perceived symptom improvement over time, more severe comorbid headache disorders, and reduced benefit from sound therapy. However, the two hypothesized hyperacusis subtypes exhibited more similarities than differences, with the majority of symptoms and comorbidities being equally prevalent across groups. Multiple comorbidities were commonly observed, including tinnitus, primary headache disorders, psychiatric disorders, and functional somatic syndromes. Intolerance of sensory stimuli in other modalities was also frequently reported. Conclusion Although this study provides little evidence that loudness and pain hyperacusis are pathophysiologically distinct conditions, our findings indicate that a pain-predominant phenotype may be a meaningful prognostic marker in patients with hyperacusis.

Background Individuals on the autism spectrum are reported to display alterations in interoception, the sense of the internal state of the body. The Interoception Sensory Questionnaire (ISQ) is a 20-item self-report measure of interoception specifically intended to measure this construct in autistic people. The psychometrics of the ISQ, however, have not previously been evaluated in a large sample of autistic individuals. Methods Using confirmatory factor analysis, we evaluated the latent structure of the ISQ in a large online sample of adults on the autism spectrum and found that the unidimensional model fit the data poorly. Using misspecification analysis to identify areas of local misfit and item response theory to investigate the appropriateness of the seven-point response scale, we removed redundant items and collapsed the response options to put forth a novel eight-item, five-response choice ISQ. Results The revised, five-response choice ISQ (ISQ-8) showed much improved fit while maintaining high internal reliability. Differential item functioning (DIF) analyses indicated that the items of the ISQ-8 were answered in comparable ways by autistic adolescents and adults and across multiple other sociodemographic groups. Limitations Our results were limited by the fact that we did not collect data for typically developing controls, preventing the analysis of DIF by diagnostic status. Additionally, while this study proposes a new 5-response scale for the ISQ-8, our data were not collected using this method; thus, the psychometric properties for the revised version of this instrument require further investigation. Conclusion The ISQ-8 shows promise as a reliable and valid measure of interoception in adolescents and adults on the autism spectrum, but additional work is needed to examine its psychometrics in this population. A free online score calculator has been created to facilitate the use of ISQ-8 latent trait scores for further studies of autistic adolescents and adults (available at https://asdmeasures.shinyapps.io/ISQ_score/).

Rumination, a form of passive, repetitive negative thinking, predicts the development of depressive disorders in non-autistic individuals, and recent work suggests higher levels of rumination may contribute to elevated rates of depression in the autistic population. Using psychological network analysis, this study sought to investigate the structure of rumination in autistic individuals and the relationships between rumination and individual depressive symptoms. Non-regularized partial correlation networks were estimated using cross-sectional data from 608 autistic adults who completed the Ruminative Responses Scale and Beck Depression Inventory–II. Node centrality indices were calculated to determine which specific symptoms may have a disproportionate influence on the network of repetitive negative thoughts. Nodes were also grouped into communities, and specific “bridge” nodes were identified that most strongly connected these different communities. Results demonstrated strong positive relationships between all facets of ruminative thinking, similar to a prior study in non-autistic adults. Self-directed negative cognitions appeared to be particularly central in this network. The depression symptoms most strongly related to rumination in autistic adults were sadness and guilt. Although these findings are preliminary, they highlight specific facets of rumination that warrant future study as depression risk factors and potential intervention targets in the autistic population. Lay abstract Autistic adults are substantially more likely to develop depression than individuals in the general population, and recent research has indicated that certain differences in thinking styles associated with autism may play a role in this association. Rumination, the act of thinking about the same thing over and over without a functional outcome, is a significant risk factor for depression in both autistic and non-autistic adults. However, little is known about how different kinds of rumination relate to each other and to depressive symptoms in the autistic population specifically. To fill this gap in knowledge, we recruited a large online sample of autistic adults, who completed questionnaire measures of both the tendency to ruminate and symptoms of depression. By examining the interacting network of rumination and depression symptoms, this study was able to identify particular aspects of rumination—such as thinking repetitively about one’s guilty feelings or criticizing oneself—that may be particularly important in maintaining these harmful thought patterns in autistic adults. Although further study is needed, it is possible that the symptoms identified as most “influential” in the network may be particularly good targets for future interventions for mood and anxiety disorders in the autistic population.

Clinical treatment for cardiac arrhythmias based on targeting ion channels is limited and can have deadly side effects. We previously reported that acute administration of βadp1 resulted in decreased action potential conduction velocity and increased arrhythmias in isolated guinea pig hearts. These changes were associated with disruption of trans-homophilic adhesion of the β1 subunit within gap junction-adjacent perinexal domains in intercalated discs. Using Electric Cell-Substrate Impedance Sensing (ECIS), we found that βadp1 shows opposing acute and long-term effects on β1 mediated adhesion. βadp1 decreases β1 mediated adhesion in 1610 cells stably expressing SCN1B/β1 (1610β1) over the first 24 hours, but after 48 hours is associated with increased adhesion. Regulated Intramembrane Proteolysis (RIP) of β1 sequentially by BACE-1 and γ-secretase results in a cleaved intracellular fragment that translocates to the nucleus and alters transcription of various genes, including VGSC subunits. Therefore, we hypothesized the long-term gain-of-adhesion-function with βadp1 treatment resulted from increased RIP of β1, with downstream VGSC gene expression effects. Inhibition of γ-secretase with DAPT accumulates a C-terminal fragment (CTF) of β1 during RIP, enabling quantification of changes to RIP. Thus, 1610β1 cells were treated with 50μM βadp1, 1μM DAPT, 50μM βadp1+1μM DAPT or 0.1% DMSO control. Cells were fixed for β1 immunofluorescence (IF) or lysate was collected at 6-, 24-, and 48-hours post treatments for Western blotting. DAPT treatment significantly increased CTF levels compared to control at all timepoints (p

Differences in audiovisual integration are commonly observed in autism. Temporal binding windows (TBWs) of audiovisual speech can be trained (i.e., narrowed) in non-autistic adults; this study evaluated a computer-based perceptual training in autistic youth and assessed whether treatment outcomes varied according to individual characteristics. Thirty autistic youth aged 8-21 were randomly assigned to a brief perceptual training (n = 15) or a control condition (n = 15). At post-test, the perceptual training group did not differ, on average, on TBWs for trained and untrained stimuli and perception of the McGurk illusion compared to the control group. The training benefited youth with higher language and nonverbal IQ scores; the training caused widened TBWs in youth with co-occurring cognitive and language impairments.

Interoception, the body’s perception of its own internal states, is thought to be altered in autism, though results have been inconsistent. The current study systematically reviewed and meta-analyzed the extant literature comparing interoceptive outcomes between autistic (AUT) and neurotypical (NT) individuals, determining which domains of interoception demonstrate robust between-group differences. A three-level Bayesian meta-analysis compared heartbeat counting performance, heartbeat discrimination performance, heartbeat counting confidence ratings, and self-reported interoceptive attention between AUT and NT groups (15 studies; n(AUT)=467, n(NT)=478). Autistic participants showed significantly reduced heartbeat counting performance (g=−0.333, CrI(95%) [−0.535, −0.138]) and higher confidence in their heartbeat counting abilities (g=0.430, CrI(95%) [0.123, 0.750]), but groups were equivalent on other meta-analyzed outcomes. Implications for future interoception research in autism are discussed.

Background. Individuals on the autism spectrum have been longed described to process sensory information differently than neurotypical individuals. While much effort has been leveraged towards characterising and investigating the neurobiology underlying the sensory differences of autism, there has been a notable lack of consistency in the terms being used to describe the nature of those differences. Main body. We argue that inconsistent and interchangeable terminology-use when describing the sensory differences of autism has become problematic beyond mere pedantry and inconvenience. We begin by highlighting current popular terms used to describe sensory differences (e.g., “sensitivity”, “reactivity” and “responsivity”) that are often observed in autism and discuss why poor nomenclature may hamper efforts towards understanding the aetiology of sensory differences in autism. We then provide a solution to interchangeable terminology-use by proposing a hierarchical taxonomy for describing and referring to various sensory domains, with specific attention to those that are different of autism. Conclusion. Inconsistency in terminology-use when describing the sensory features of autism has stifled discussion and scientific understanding of the sensory differences of autism. An agreed-upon hierarchical taxonomy will help resolve lack of clarity when discussing the sensory differences of autism and place future research targets at appropriate levels of analysis.

Measurement-based care is an approach to clinical care that involves systematically evaluating patient-reported outcomes to guide clinical decision making with a strong evidence base in the general population; however, its use in autism is limited. As autistic people are more likely to be diagnosed with psychiatric disorders (e.g. depression, anxiety) and to use psychiatric services (e.g. psychotherapy) than the general population, efforts to enhance clinical care for this population are critical. The current proof-of-concept study presents the development and pilot administration of an autism-adapted measurement-based care (MBC-AUT) system for psychotherapy designed for and with autistic people, as well as preliminary data on the feasibility, acceptability, benefits, and barriers to the adoption of the system for clients and clinicians. Findings from the first 18 youth and adult clients to use the system suggest that the MBC-AUT system is feasible and acceptable. Important benefits of the MBC-AUT system for clients and clinicians were identified through semi-structured interviews, and some barriers to the use of the MBC-AUT system were raised. Potential solutions are presented to address these barriers and to reduce the client and clinician burden. As autistic clients continue to seek psychological services, efforts to enhance the delivery and quality of psychotherapy for this population are essential. Lay abstract Autistic youth and adults are more likely to experience psychiatric symptoms (e.g. depression, anxiety) and to use psychiatric services than non-autistic people, yet research on evidence-based approaches to enhance psychiatric care for autistic people is limited. Measurement-based care is an evidence-based approach to psychotherapy that improves outcomes for clients, clinicians, and organizations by routinely administering and evaluating measures to clients. Despite this, research on measurement-based care systems for autistic clients is sparse. To address this gap, we developed an autism-adapted measurement-based care (MBC-AUT) system for and with autistic people and pilot tested the system in an outpatient psychiatry clinic to investigate the preliminary feasibility, acceptability, benefits, and barriers to this system for clients and clinicians. Findings suggested that the MBC-AUT system was a feasible and acceptable system for the first 18 autistic youth, their caregivers, and autistic adults to use the system. In semi-structured interviews, clients and clinicians discussed the benefits of the MBC-AUT system to various therapeutic processes, as well as several important barriers to the use of the system. We offer potential solutions to address these barriers and to reduce client and clinician burden, and propose future directions for this line of research to increase access to more autistic people. As autistic clients continue to seek psychological services amid social landscapes of increasing complexity (e.g. COVID-19 pandemic), efforts to enhance the delivery of psychotherapy for this population are critical.

OBJECTIVES In the United States, autistic individuals experience disproportionate physical and mental health challenges relative to non-autistic individuals, including higher rates of co-occurring and chronic conditions and lower physical, social, and psychological health-related quality of life. The Autism Intervention Research Network on Physical Health (AIR-P) is an interdisciplinary, multicenter research network for scientific collaboration and infrastructure that aims to increase the life expectancy and quality of life for autistic individuals, with a focus on underserved or vulnerable populations. The current paper describes the development of the AIR-P Research Agenda. METHODS Development of the research agenda involved an iterative and collaborative process between the AIR-P Advisory Board, Steering Committee, and Autistic Researcher Review Board. The methodology consisted of 3 phases: (1) ideation and design, (2) literature review and synthesis; and (3) network engagement. RESULTS Six core research priorities related to the health of autistic individuals were identified: (1) primary care services and quality, (2) community-based lifestyle interventions, (3) health systems and services, (4) gender, sexuality, and reproductive health, (5) neurology, and (6) genetics. Specific topics within each of these priorities were identified. Four cross-cutting research priorities were also identified: (1) neurodiversity-oriented care, (2) facilitating developmental transitions, (3) methodologically rigorous intervention studies, and (4) addressing health disparities. CONCLUSIONS The AIR-P Research Agenda represents an important step forward for enacting large-scale health-promotion efforts for autistic individuals across the lifespan. This agenda will catalyze autism research in historically underrepresented topic areas while adopting a neurodiversity-oriented approach to health-promotion.

Background and ObjectivesSomatic symptoms are the most common cause of outpatient medical visits in the general population, yet their presence and severity in individuals on the autism spectrum has rarely been studied. We sought to assess the prevalence, impact, and clinical correlates of fourteen commonly-reported somatic symptoms in a sample of transition-aged autistic young adults.MethodsA sample of 290 independent and cognitively able autistic young adults (aged 18–26 years; mean [SD]: 23.10 [2.38] years) was recruited from the Simons Foundation SPARK participant pool. A modified version of the Patient Health Questionnaire–15 was used to assess somatic symptom prevalence/impact, along with measures of depression, anxiety, autistic traits, and quality of life.ResultsSomatic symptom burden was much higher in autistic young adults than previously reported in the general population. The most commonly reported current symptoms were fatigue (72.8%), sleep problems (69.0%), and menstrual problems (61.4% of females). Moderate or severe symptom levels were reported by 53.9% of females and 18.75% of males in our cohort, with the odds of females of endorsing any given symptom being 2–4 times greater than males. Both individual symptoms and total symptom burden were related to higher levels of depression, anxiety, and autistic traits, along with lower quality of life.ConclusionDespite little research on this topic previously, somatic symptoms are highly prevalent in autistic young adults, particularly women. Future research is needed to investigate links between somatic symptoms, medical and psychiatric morbidity, and health care utilization in the autistic population.What’s Known on This SubjectSomatic symptoms are highly prevalent in the general population and account for a large proportion of health care costs. However, few studies have investigated the prevalence, impact, or correlates of these symptoms in individuals on the autism spectrum.What This Study AddsTo our knowledge, this is the first study to specifically assess current and lifetime somatic symptom burden, symptom onset patterns, and the clinical correlates of multisystem symptom distress in transition-aged young adults on the autism spectrum.

Proponents of autism intervention and those of the neurodiversity movement often appear at odds, the former advocating for intensive treatments and the latter arguing that autism must be accepted as a form of diversity. The history of behavioral intervention has understandably outraged many in the Autistic community, though many still value supports focused on quality of life. This commentary argues that Naturalistic Developmental Behavioral Interventions (NDBIs) hold promise for bridging the gap between early intervention and the neurodiversity movement. However, we recognize NDBIs have much room to grow and suggest multiple strategies for improvement. We believe these updates are not only feasible for clinicians and researchers to implement but will ultimately lead to improved quality of life for Autistic individuals.

The intercalated disc (ICD) is unique membrane structure that is indispensable to normal heart function. However, its structural organization is not well understood. Previously, we showed that the ICD-bound transmembrane protein 65 (Tmem65) was required for connexin 43 (Cx43) localization in cultured mouse neonatal cardiomyocytes. Here, we investigated the role of Tmem65 in ICD organization in vivo . A mouse model was established by injecting CD1 mouse pups (3-7 days after birth) with recombinant adeno-associated virus 9 (rAAV9) harboring Tmem65 (or scrambled) shRNA. Quantitative polymerase chain reaction (qPCR) and immunoblots confirmed greater than 85% reduction in Tmem65 expression (7.1±0.7% remained for Tmem65 proteins; 14.4±2.5% remained for Tmem65 transcripts, n =4) in mouse ventricles compared to control hearts. Tmem65 knockdown (KD) mice exhibited heart failure-like symptoms as early as 3 weeks post viral administration. Specifically, Tmem65 KD mice developed eccentric hypertrophic cardiomyopathy in 3 weeks and dilated cardiomyopathy with severe cardiac fibrosis in 7 weeks, as confirmed by H&E and Masson’s Trichrome staining. Echocardiography and electrocardiography, respectively, showed depressed hemodynamics (19.27±1.46ml/min for cardiac output in control hearts vs. 6.63±0.52ml/min for Tmem65 KD hearts, n =6) and impaired conduction, including prolonged PR (22.7±1.85ms in control hearts vs. 28.89±3.85ms in Tmem65 KD hearts, n≥8), QRS intervals (10.47±0.42ms in control hearts vs. 16.35±0.36ms in Tmem65 KD hearts, n≥8), and slowed heart rate (415±10bpm in control hearts vs. 347±16bpm in Tmem65 KD hearts, n≥8) in Tmem65 KD mouse hearts. Immunoprecipitation and super-resolution microscopy confirmed the physical interaction and localization between Tmem65 and voltage-gated sodium channel β subunit (β1) at the ICD and this interaction was evidently required for the establishment of perinexal nanodomains and voltage-gated sodium channel 1.5 (NaV1.5) localization to the ICD. Disrupting Tmem65 function, thus, impaired perinexal structure, reduced conduction velocity, and ultimately resulted in cardiomyopathy in vivo .

Background and ObjectivesStrabismus, a misalignment of the eyes, is an important risk factor for amblyopia and visual impairment in the pediatric population. Several studies have reported an increased likelihood of strabismus in persons on the autism spectrum, but prevalence estimates in this group vary greatly.MethodsWe searched multiple databases to identify peer-reviewed articles published in English through November 1, 2020 that provided estimates of strabismus prevalence in autistic individuals. Prevalence estimates were synthesized using Bayesian random-effects meta-analysis, and sensitivity analysis was also performed using only the subset of studies that recruited participants from non-ophthalmologic settings and identified strabismus using structured ocular exams. Bayesian meta-regression was used to assess potential moderators of prevalence across studies.ResultsA total of 151 nonduplicate articles were screened, of which 22 were included in the meta-analysis (k=28 samples, nAUT=113,227). The meta-analytic point prevalence of strabismus in autistic individuals was 13.4% (95% CrI [8.3,19.4]), and sensitivity analysis produced a very similar estimate (14.0% [7.0,22.0], nAUT=581). Esotropia was the predominant subtype of strabismus reported, accounting for approximately 55% of cases. Reported prevalence rates were higher in younger samples (BF10=13.43, R2Het =0.273) and samples recruited from optometry/ophthalmology clinics (BF10=11.47, R2Het =0.238).ConclusionThis meta-analysis found a high prevalence of strabismus in autistic individuals, with rates 3–10 times that of the general population. As untreated strabismus is a major risk factor for amblyopia in young children, these findings underscore the importance of timely screening and assessment of ocular problems in persons on the autism spectrum.What’s Known on This SubjectStrabismus has been reported to be more prevalent in individuals on the autism spectrum, but estimates have been very imprecise, ranging from 3–84% across studies.What This Study AddsThis study performs the first quantitative synthesis of strabismus prevalence in over 100,000 autistic individuals, generating more precise estimates of the prevalence of strabismus in the autistic population. Factors contributing to the large differences between studies are also examined using meta-regression.