Research methods at the intersection of gender diversity and autism: A scoping review.

LAY ABSTRACT: Research has increasingly focused on the intersection between gender diversity and autism. To better understand this literature, this scoping review systematically searched five databases for peer-reviewed literature on gender diversity and autism published between 2018 and 2023. Included studies (N = 84) were of English language, featured original qualitative or quantitative findings, and examined a psychosocial connection between autism and gender spectra variables. Most studies focused on measuring prevalence of autism among gender-diverse individuals. While the overall study rigor was acceptable, weaknesses in measurement, sample selection, and definition of key terms were noted. Promisingly, studies in this area appear to be shifting away from a pathologizing lens and towards research methods that engage in meaningful collaboration with the autistic, gender-diverse community to investigate how to best enhance the quality of life and wellbeing of this population.

Trajectory research in children with an autism diagnosis: A scoping review.

LAY ABSTRACT: The types of outcomes studied in children on the autism spectrum include clinical characteristics, such as social functioning, communication, language, or autism symptoms. Research that measures these outcomes at multiple timepoints is useful to improve our understanding of what to expect as children develop. In trajectory studies, researchers assess outcomes at three or more timepoints. This method has advantages over two-timepoint studies because it allows researchers to describe changes in the speed of development, such as accelerations, plateaus, or slowdowns. We identified and reviewed 103 published trajectory studies in children (to age 18 years) with an autism diagnosis. Importantly, we did not include studies of treatments or their effects, nor did we summarize the results of studies. Instead, this review summarizes the characteristics of the available published research, including the methods used, the many different outcomes that have been studied over time and the ages over which they have been studied. This summary may be of interest to autistic people and caregivers (parents) who want to know about the existence of research that provides answers about what to expect during an autistic child's development. We have recommended that future trajectory research efforts try to make up for the lack of studies from low- and middle-income countries; that more attention is given to the following outcomes that are meaningful to caregivers and autistic people; and to try to fill in the age gaps where more outcome-specific data are needed.

The ethical imperative to honor autistic clients' autonomy in mental health treatment.

Autistic adolescents and adults commonly experience mental health concerns; however, mental health clinicians may hold implicit stigmatizing views of autism that contribute to case conceptualization and treatment goal setting that align more with caregivers' than clients' goals. This impingement on client autonomy is concerning, problematic, and potentially harmful for autistic clients who are of an age to set their own treatment agenda regardless of co-occurring intellectual disability and/or language delays. An application of the shared decision-making framework, an evidence-based tool for promoting client autonomy, can help to avoid these challenges in treatment. In this perspective, we use a case vignette as an anchor for discussing the imperative of honoring autistic clients' autonomy in mental health treatment and guiding shared decision-making to reduce stigma, promote autonomy, and increase collaborative care for autistic clients in mental health treatment.

Mindshift in autism: a call to professionals in research, clinical, and educational settings.

Autistic people often have poor outcomes over the life course, including in health, education, employment, and community inclusion. Many professionals working with Autistic adults in research, clinical, and educational settings devote their careers to trying to improve such outcomes. However, we maintain that real progress cannot happen without a fundamental mindshift. The status quo for professionals is to view autism as an illness. Instead, the neurodiversity movement encourages us to value and embrace autism as an aspect of human diversity and asks us to view Autistic people as a marginalized group that experiences significant disparities. While some professionals may be adopting language and concepts from the neurodiversity movement, we argue that making this mindshift fundamentally changes our practice across research, clinical, and educational settings. In this perspective, we call on professionals to embrace this mindshift to reduce discrimination and stigma, halt the spread of harmful ideologies, and help Autistic adults live fulfilling lives.

Concordance of multiple informant assessment of school-based social skills intervention and association with child outcomes: Results from a randomized trial.

Background: Fidelity, or the degree to which an intervention is implemented as designed, is essential for effective implementation. There has been a growing emphasis on assessing fidelity of evidence-based practices for autistic children in schools. Fidelity measurement should be multidimensional and focus on core intervention components and assess their link with program outcomes. This study evaluated the relation between intervention fidelity ratings from multiple sources, tested the relation between fidelity ratings and child outcomes, and determined the relations between core intervention components and child outcomes in a study of an evidence-based psychosocial intervention designed to promote inclusion of autistic children at school, Remaking Recess. Method: This study extends from a larger randomized controlled trial examining the effect of implementation support on Remaking Recess fidelity and child outcomes. Schools were randomized to receive the intervention or the intervention plus implementation support. Observers, intervention coaches, and school personnel completed fidelity measures to rate completion and quality of intervention delivery. A measure of peer engagement served as the child outcome. Pearson correlation coefficients were calculated to determine concordance between raters. Two sets of hierarchical linear models were conducted using fidelity indices as predictors of peer engagement. Results: Coach- and self-rated completion and quality scores, observer- and self-rated quality scores, and observer- and coach-rated quality fidelity scores were significantly correlated. Higher observer-rated completion and quality fidelity scores were predictors of higher peer engagement scores. No single intervention component emerged as a significant predictor of peer engagement. Conclusions: This study demonstrates the importance of using a multidimensional approach for measuring fidelity, testing the link between fidelity and child outcomes, and examining how core intervention components may be associated with child outcomes. Future research should clarify how to improve multi-informant reports to provide "good enough" ratings of fidelity that provide meaningful information about outcomes in community settings. Plain Language Summary: Fidelity is defined as how closely an intervention is administered in the way the creators intended. Fidelity is important because it allows researchers to determine what exactly is leading to changes. In recent years, there has been an interest in examining fidelity of interventions for autistic children who receive services in school. This study looked at the relationship between fidelity ratings from multiple individuals, the relationship between fidelity and child outcomes, and the relationship between individual intervention component and child changes in a study of Remaking Recess, an intervention for autistic children at school. Schools were randomly selected to receive the intervention only or the intervention plus implementation support from the research team. Observers, intervention coaches, and individuals delivering the intervention themselves completed fidelity measures. Child engagement with peers was measured before and after the intervention. Several measures of self-, coach-, and observer-report fidelity were associated with each other. Higher observer-reported fidelity was associated with higher child peer engagement scores. No single intervention step was linked to child peer engagement and both treatment groups had similar outcomes in terms of fidelity. This study shows the importance of having multiple raters assess different parts of intervention fidelity, looking at the link between fidelity and child outcomes, and seeing how individual intervention steps may be related to outcomes. Future research should aim to find out which types of fidelity ratings are "good enough" to lead to positive changes following treatment so that those aspects can be used and targeted in the future.

Examining clinical characteristics of autism and links with parent perceptions of sibling relationship quality.

LAY ABSTRACT: Sibling relationship quality is important for the well-being of children on the autism spectrum and their siblings. Little is known, however, about how varied behavior and abilities of children on the autism spectrum may be associated with parent perceptions of domains of sibling relationship quality. We drew data from a subsample of 119 children on the autism spectrum (ages 10-11 years), participating in an ongoing longitudinal study. We looked at how three clinical characteristics (autism symptoms, behavioral difficulties, and communication ability) related to four areas of parent-reported sibling relationship quality (warmth/closeness, conflict, relative status/power, and rivalry). We also examined whether the strength of the association between behavioral difficulties and parent-reported sibling relationship quality was influenced by communication ability. We found that more severe autism symptoms were associated with less conflict and rivalry, and higher communication ability was associated with more relative status/power. We also found that children on the autism spectrum with more behavioral difficulties and weaker communication ability had less warmth/closeness in their sibling relationships. Our findings highlight that it is important to consider autism symptoms, behavioral difficulties, and communication ability, as well as multiple domains of relationship quality, to better understand how parents view the relationships between autistic children and their siblings. Clinically, methods for improving sibling relationships may include teaching conflict resolution strategies to children on the autism spectrum with stronger communication abilities and their siblings, and fostering sibling connection for those with lower communication abilities.

Brief Report: Links Between Nonconformity to Gender Norms, Autistic Features, and Internalizing Symptoms in a Non-clinical College Sample.

Research shows elevated gender variance among autistic people and more autistic traits among gender diverse people, each of which is related to mental health concerns. Little work has explored broad features of these presentations in a non-clinical sample. College students (n = 174) ages 18-22 years completed questionnaires assessing the broader autism phenotype (BAP), autistic features, nonconformity to gender norms, and internalizing symptoms. Those with more BAP features or autistic communication reported more nonconformity to gender norms. Higher levels of internalizing symptoms were related to more gender nonconformity, BAP, and autistic features. Gender nonconformity marginally moderated the effect of BAP on depression but not anxiety. The BAP, autistic features, and gender nonconformity are important in understanding mental well-being.

Experiences of student and trainee autism researchers during the COVID-19 pandemic.

Circumstances surrounding the COVID-19 pandemic have resulted in significant personal and professional adjustments. Students and trainees, including those in autism research, face unique challenges to accomplishing their training and career goals during this unprecedented time. In this commentary, we, as members of the International Society for Autism Research Student and Trainee Committee, describe our personal experiences, which may or may not align with those of other students and trainees. Our experiences have varied both in terms of the ease (or lack thereof) with which we adapted and the degree to which we were supported in the transition to online research and clinical practice. We faced and continue to adjust to uncertainties about future training and academic positions, for which opportunities have been in decline and have subsequently negatively impacted our mental health. Students and trainees' prospects have been particularly impacted compared to more established researchers and faculty. In addition to the challenges we have faced, however, there have also been unexpected benefits in our training during the pandemic, which we describe here. We have learned new coping strategies which, we believe, have served us well. The overarching goal of this commentary is to describe these experiences and strategies in the hope that they will benefit the autism research community moving forward. Here, we provide a set of recommendations for faculty, especially mentors, to support students and trainees as well as strategies for students and trainees to bolster their self-advocacy, both of which we see as crucial for our future careers. LAY SUMMARY: The COVID-19 pandemic has affected students and trainees, including those in autism research, in different ways. Here, we describe our personal experiences. These experiences include challenges. For example, it has been difficult to move from in-person to online work. It has also been difficult to keep up with work and training goals. Moreover, working from home has made it hard to connect with our supervisors and mentors. As a result, many of us have felt unsure about how to make the best career choices. Working in clinical services and getting to know and support our patients online has also been challenging. Overall, the pandemic has made us feel more isolated and some of us have struggled to cope with that. On the other hand, our experiences have also included benefits. For example, by working online, we have been able to join meetings all over the world. Also, the pandemic has pushed us to learn new skills. Those include technical skills but also skills for well-being. Next, we describe our experiences of returning to work. Finally, we give recommendations for trainees and supervisors on how to support each other and to build a strong community.

A Preliminary Psychometric Analysis of the Difficulties with Emotion Regulation Scale (DERS) Among Autistic Adolescents and Adults: Factor Structure, Reliability, and Validity.

Emotion dysregulation is common among autistic people, yet few measures have received psychometric evaluation in this population. We examined the factor structure, reliability, and validity of a commonly-used measure of emotion dysregulation, the Difficulties with Emotion Regulation Scale (DERS), in a sample of 156 autistic adolescents and adults. Data were drawn from the NIH National Database for Autism Research (NDAR) and an author's existing dataset. Results demonstrated that the factor structure generally conformed to the original 6-factor model, with modifications. Reliability analyses revealed good-to-excellent internal consistencies. Validity analyses indicated that the DERS was positively associated with measures of anxiety, depression, and alexithymia. Our findings provide preliminary evidence for the utility of the DERS in a small autistic sample, with minor modifications.

Trajectory research in children on the autism spectrum: a scoping review protocol.

INTRODUCTION: Longitudinal trajectory methods, featuring outcome assessments at three or more time points, are increasingly being used as appropriate approaches to understand developmental pathways of people on the autism spectrum across the lifespan. Understanding the scope of this rapidly expanding body of research can help inform future trajectory studies and identify areas for potential meta-analysis as well as key evidence gaps. We present the protocol for a scoping review whose objective is to identify and summarise the scope of research that uses a longitudinal trajectory study design to examine development in children diagnosed with autism. Specifically, we will identify outcome domains and age intervals that have been well characterised, areas where further research is needed and the historical use of various longitudinal trajectory analytical approaches. METHODS AND ANALYSIS: We outline the methods for the proposed scoping review according to the framework outlined by Arksey and O'Malley, with subsequent clarifications and enhancements by other authors. Using a search strategy developed by a medical librarian, we will search six databases for relevant publications. Titles and abstracts will be screened in duplicate, followed by full-text screening. Data extraction fields developed predominantly a priori from a set of guiding subquestions will be used to chart relevant data. The findings will include quantitative aggregate summaries, narrative summaries, and appraisal of trajectory studies according to our methodological subquestions. We will consult autistic self-advocate and parent-caregiver stakeholders to facilitate interpretation of the findings. ETHICS AND DISSEMINATION: Research ethics approval is not required for this scoping review. The results will be presented to researcher, care professional, policy-maker and stakeholder audiences at local and international conferences, other dissemination activities and published in a peer-reviewed journal.

Profiles of Autonomic Activity in Autism Spectrum Disorder with and without Anxiety.

Both anxiety and autism spectrum disorder (ASD) are associated with atypical physiological activity. Few studies have systematically assessed the resting physiological activity in ASD with co-occurring anxiety disorders. We tested 75 participants divided in four groups: youth with ASD, with (ASD + Anxiety = 22, 6F, 12.29 ± 2.83 years old) and without co-occurring anxiety (ASD Alone = 15, 6F, 11.59 ± 2.85 years old) and compared their physiological profile with that of matched typically developing controls (TDC) with (Anxiety Alone = 16, 6F, 11.24 ± 3.36 years old) and without co-occurring anxiety disorders (TDC = 22, 8F, 11.88 ± 2.88 years old). Results indicated reduced sympathetic and parasympathetic activity at rest in ASD as compared to TDC youth. ASD + Anxiety and Anxiety Alone groups showed different sympathetic, but similar parasympathetic activity. These findings suggest that autonomic profile-based approaches may advance research, diagnosis, and treatment of ASD and anxiety.

A Psychometric Analysis of the Social Anxiety Scale for Adolescents Among Youth With Autism Spectrum Disorder: Caregiver-Adolescent Agreement, Factor Structure, and Validity.

Social anxiety is common among adolescents with autism spectrum disorder (ASD). An ongoing challenge for both research and clinical practice in ASD is the assessment of anxious symptomatology. Despite its widespread use in samples of youth with ASD, the Social Anxiety Scale for Adolescents (SAS-A) has not received psychometric evaluation within this population; thus, the validity of its use in research and clinical practice for ASD remains unclear. The present study conducted a psychometric analysis of caregiver and adolescent SAS-A forms in a sample of adolescents with ASD (N = 197). Results revealed (1) poor caregiver-adolescent item-level agreement, (2) a two-factor structure, (3) lack of measurement invariance between reporters, and (4) modest evidence for convergent and discriminant validity. Overall, findings suggest that this measure demonstrates reasonable psychometric properties in an ASD sample. Lack of measurement invariance, however, calls for careful interpretation of research involving the SAS-A in ASD samples, particularly when the primary goal is to compare adolescent and caregiver reports. The implications of these findings for future research and clinical practice are discussed.

The role of loneliness as a mediator between autism features and mental health among autistic young adults.

LAY ABSTRACT: Autistic adults commonly experience mental health concerns including social anxiety and depression, which can have negative effects on their quality of life. It is not completely clear, however, why rates of mental health concerns are so high. Some evidence suggests that social connectedness might play a key role. The goal of this study was to explore links between loneliness, mental health concerns, autism features, and social contact among autistic adults and test whether the links between mental health with autism features and social contact can be explained by loneliness. Researchers in this study collected data using questionnaires completed by 69 autistic young adults. Autistic adults who reported more autism features also reported more social and family loneliness, higher levels of social anxiety and depression, and fewer initiated social contacts. In addition, adults with more social contact initiations were likely to report lower levels of social and family loneliness and social anxiety but not depression. Results showed that the link from social engagement and autism features to social anxiety and depression symptoms could be mostly explained by loneliness. The results of this study expand previous findings by illustrating one factor (loneliness) that might be responsible for the high rates of mental health concerns among adults on the autism spectrum. These findings highlight the importance of studying factors related to mental health concerns among autistic adults and ways to best support social connectedness for the mental well-being of autistic young adults.

The neurobiological presentation of anxiety in autism spectrum disorder: A systematic review.

Anxiety is common among people with autism and is associated with unique and additive challenges. Anxiety is thought to have neurobiological components, and measures of arousal in typical development have long been studied. Recently, neurobiological measures of anxiety in autism have begun to receive empirical evaluation, but results have not yet been examined together. This systematic review, therefore, summarizes the state of the research of the neurobiology of anxiety in autism. Studies published between 1999 and June 2017 were reviewed. Results across measures of arousal point to inconsistencies in results and a lack of synthesis in the literature. Considerations regarding these inconsistencies are discussed, recommendations for future studies are offered, and clinical implications for this work are presented. Autism Res 2019, 12: 346-369 © 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Anxiety is common among people with autism. Because anxiety has been linked with a variety of differences in physiological (bodily) and neurophysiological (brain) functioning in people without autism, research has begun to examine these processes in autism as well. This literature, however, has not yet been examined as a whole. Therefore, this paper begins to address that gap to provide the field with a better understanding of how anxiety affects people with autism and discusses implications for future research and clinical practice.

Social difficulties in youth with autism with and without anxiety and ADHD symptoms.

Social difficulties inherent to autism spectrum disorder are often linked with co-occurring symptoms of anxiety and attention deficit hyperactivity disorder (ADHD). The present study sought to examine the relation between such co-occurring symptoms and social challenges. Parents of adolescents with autism (N = 113) reported upon social challenges via the social responsiveness scale (SRS) and anxiety and ADHD symptomatology via the Child Behavior Checklist. Results revealed differences in SRS scores across co-occurring symptom subgroups (Anxiety, ADHD, Both, Neither)-namely, adolescents with autism and anxiety as well as those with autism, anxiety, and ADHD showed greater scores on the SRS than the other groups. Implications for research and clinical practice are discussed and recommendations are offered. Autism Research 2018, 11: 1679-1689. © 2018 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Anxiety and attention deficit hyperactivity disorder (ADHD) symptoms are related to greater social challenges for adolescents with autism spectrum disorder. The present study found that autism with anxiety and autism with anxiety and ADHD, was related to greater social difficulties than autism alone. Findings provide further support for the intertwined nature of anxiety and ADHD symptoms in autism. What this may mean for research and clinical practice is considered and recommendations are suggested.

Behavioral inhibition and activation as a modifier process in autism spectrum disorder: Examination of self-reported BIS/BAS and alpha EEG asymmetry.

The Modifier Model of autism spectrum disorder (ASD) suggests that phenotypic variability within ASD is rooted in modifier processes, such as the behavioral inhibition system (BIS) and behavioral activation system (BAS). Among a sample of 53 adolescents with ASD, this study examined associations between (a) self-reported BIS/BAS and frontal and parietal alpha electroencephalogram asymmetry and whether these indices related to (b) ASD severity (via the Autism Quotient), and/or (c) co-occurring anxiety and attention-deficit hyperactivity disorder (via Youth Self Report and Child Behavior Checklist). Findings showed that alpha asymmetry was associated with self-reported BAS scores, such that greater BAS was related to greater right-frontal hemisphere activation and relatively greater left-parietal hemisphere activation. Additionally, associations emerged between ASD severity and self-reported BAS and alpha asymmetry, and between anxiety symptoms and self-reported BIS and alpha asymmetry. Furthermore, mediation analyses revealed that BAS mediated the association between asymmetry and autism severity. Therefore, alpha asymmetry and BIS/BAS activity may provide insight into how ASD presents in adolescence as well as who might be at greater risk for developing co-occurring psychopathologies. This study highlights the importance of considering motivational systems to elucidate individual differences among youth with ASD and working toward the longer term goal of better understanding differential responses to treatment. Autism Research 2018, 11: 1653-1666. © 2018 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Differences in the likelihood to avoid (behavioral inhibition system; BIS) or approach (behavioral activation system; BAS) situations are thought to relate to patterns of brain activity (via electroencephalogram asymmetry asymmetry). This study revealed that these tendencies may influence the presentation of autism spectrum disorder (ASD) and symptoms of anxiety in adolescents with ASD.

Changes in Depressive Symptoms Among Adolescents with ASD Completing the PEERS® Social Skills Intervention.

Depression is a common concern among people with autism spectrum disorder (ASD) and is often associated with social skills and relationship challenges. The present data, from a randomized controlled trial, examined the effect of PEERS® on self-reported depressive symptoms via the Children's Depression Inventory (CDI) among 49 adolescents with ASD. Findings revealed that many CDI subscale scores declined (p's < 0.05) and were related to direct social contact on the Quality of Socialization Questionnaire at posttest (p's < 0.05). Exploratory analyses uncovered that suicidality was less evident following PEERS®. Findings support the notion that social functioning and depression may be intimately intertwined in ASD; therefore, bolstering social skills in ASD may positively influence other domains of functioning, including mental health.

Examining the Links Between Challenging Behaviors in Youth with ASD and Parental Stress, Mental Health, and Involvement: Applying an Adaptation of the Family Stress Model to Families of Youth with ASD.

Raising a child with autism spectrum disorder (ASD) poses unique challenges that may impact parents' mental health and parenting experiences. The current study analyzed self-report data from 77 parents of youth with ASD. A serial multiple mediation model revealed that parenting stress (SIPA) and parental mental health (BAI and BDI-II) appears to be impacted by challenging adolescent behaviors (SSIS-PBs) and, in turn, affect parental involvement (PRQ), controlling for social skills (SSIS-SSs). Further, the study explored the malleability of parents' mental health over the course of a social skills intervention, and provides modest evidence that parent depressive symptoms decline across intervention. This study illustrates the importance of considering the entire family system in research on youth with ASD.

Amygdala Volume Differences in Autism Spectrum Disorder Are Related to Anxiety.

Recent studies suggest that longstanding findings of abnormal amygdala morphology in ASD may be related to symptoms of anxiety. To test this hypothesis, fifty-three children with ASD (mean age = 11.9) underwent structural MRI and were divided into subgroups to compare those with at least one anxiety disorder diagnosis (n = 29) to those without (n = 24) and to a typically developing control group (TDC; n = 37). Groups were matched on age and intellectual level. The ASD and anxiety group showed decreased right amygdala volume (controlled for total brain volume) relative to ASD without anxiety (p = .04) and TDCs (p = .068). Results suggest that youth with ASD and co-occurring anxiety have a distinct neurodevelopmental trajectory.

Brief Report: Does Gender Matter in Intervention for ASD? Examining the Impact of the PEERS® Social Skills Intervention on Social Behavior Among Females with ASD.

A paucity of research has been conducted to examine the effect of social skills intervention on females with ASD. Females with ASD may have more difficulty developing meaningful friendships than males, as the social climate can be more complex (Archer, Coyne, Personality and Social Psychology Review 9(3):212-230, 2005). This study examined whether treatment response among females differed from males. One hundred and seventy-seven adolescents and young adults with ASD (N = 177) participated in this study. When analyzed by group, no significant differences by gender emerged: PEERS® knowledge (TASSK/TYASSK, p = .494), direct interactions (QSQ, p = .762), or social responsiveness (SRS, p = .689; SSIS-RS, p = .482). Thus, females and males with ASD respond similarly to the PEERS® intervention.