Short report: Recommendations for education, clinical practice, research, and policy on promoting well-being in autistic youth and adults through a positive focus on sexuality and gender diversity.

LAY ABSTRACT: In this article, we propose recommendations on what we can do to promote that autistic people can enjoy their sexuality and gender identity, because that contributes to overall well-being.First, we briefly summarize the existing research on sexuality and gender diversity in autistic individuals.Next, we propose recommendations for how to promote sexual and gender diversity-related health and well-being. Based on what is known about sexuality, gender diversity, and relationships in autistic adolescents and adults, we convened an international group of autistic and non-autistic researchers, advocates, parents, and professionals to develop recommendations to promote sexual and gender health in autistic people.The resulting recommendations were checked through an online survey distributed to autistic people across the world. The online participants endorsed the importance of eight final recommendations related to:1. Providing education and information on sexuality, relationships, and gender diversity to autistic individuals and their families;2. Improving expertise in and accessibility to healthcare for sexuality, relationships, and gender-related questions, with specific attention to prevention of and support after sexual victimization; and3. Meaningfully including the autism community in future research that addresses well-being relating to sexuality, relationships, and gender diversity.These community-driven recommendations aim to promote sexual health and well-being in autistic individuals internationally.

Measuring the prevalence of autistic traits in a cohort of adults living with HIV or taking HIV pre-exposure prophylaxis and mapping safer-sex barriers and facilitators: a study protocol.

INTRODUCTION: Autistic individuals identify with a wider range of sexual orientations than non-autistic individuals, including higher rates of bisexual orientation in autistic men. Gay, bisexual and other men who have sex with men are at greater risk for HIV. Prevalence data of autistic traits in people living with HIV or using Pre-Exposure Prophylaxis (PrEP) for HIV are lacking so far. Such data, combined with insights in barriers and facilitators for safer sex in autistic people living with HIV or using PrEP, are a first step to improve health support for autistic people in HIV clinics. This support is crucial since autistic individuals have worse physical and mental health outcomes. The objective of this research is to determine the prevalence of autistic traits within the group of people living with HIV or using PrEP in Belgium and to describe specific facilitators and barriers for sexual safer behaviour in people living with HIV and PrEP users with autistic traits. METHODS AND ANALYSIS: The research is a cross-sectional, observational and multicentre study with recruitment of individual participants. The research consists of two phases. In phase 1, adults coming for HIV/AIDS care or HIV PrEP in participating Belgian HIV Reference Centres will be invited to fill in the validated Autism Spectrum Quotient questionnaire. In phase 2, participants with a score above the predefined cut-off for autistic traits (>26), who agreed to be informed about this score, will be invited to complete an additional survey, inquiring facilitators and barriers for sexual safer behaviour. ETHICS AND DISSEMINATION OF RESULTS: Institutional Review Board Institute of Tropical Medicine Antwerp, 25 July 2022, REF 1601/22 and University Hospital of Antwerp, 12 September 2022, Project ID 3679: BUN B3002022000111. Study results will be published in peer-reviewed journals and presented to Belgian HIV Reference Centres and at conferences.

The Earlier, the Better? An In-Depth Interview Study on the Ethics of Early Detection with Parents of Children at an Elevated Likelihood for Autism.

Autism is increasingly viewed as an expression of neurodiversity deserving accommodation, rather than merely as a disorder in need of remediation or even prevention. This reconceptualization has inspired calls to broaden the ethical debate on early autism care beyond matters of efficient screenings and effective interventions. We conducted 14 in-depth interviews with 26 parents of infants at an increased likelihood for autism (siblings, preterms and children with persistent feeding difficulties) to understand which benefits and risks these parents see for the implementation of a systematic, early autism detection program in our region. With this study, we aim to contribute empirically to the ethical debate on good and just early autism care in the age of neurodiversity. Data were analyzed according to the QUAGOL-methodology. Three main themes emerged from our analysis. In their evaluation of early autism detection, parents discussed how a diagnosis helps gain a different perspective fostering understanding and recognition for both child and parent. Second, a diagnosis supports parents in adjusting their parenting practices, to justify this deviation from "normal" parenting and to strive for such adjusted environments beyond the nuclear family. Third, an autism diagnosis induces ambiguities parents need to navigate, involving questions on whether and when to mobilize the diagnostic label and which language to use to talk about autism. We discuss the complex position of parents of a (potentially) autistic child in terms of moving back and forth across the ab/normal binary and describe implications for the ethical debate on early autism detection.

Sensory Processing and Executive Functioning in Autistic Adults.

PURPOSE: One of the core features that can be experienced by adults on the autism spectrum is hyper- and hyporeactivity to sensory stimuli. Research suggests that executive functioning (EF) impairments are related to sensory issues. In this study the relationship between sensory processing issues and EF was investigated. We expected sensory processing issues to predict EF impairments. METHODS: Thirty men and 30 women on the autism spectrum, 20 men and 24 women without autism were included and matched on intelligence and age. Group comparisons were conducted to determine if groups differed regarding self-reported sensory processing issues (GSQ-NL) and self-reports on EF (BRIEF-A). Correlational and regression analyses were carried out to investigate the relationship between self-reports on GSQ-NL and BRIEF-A. RESULTS: We found significant differences between men and women on the spectrum with regard to sensory processing issues and EF. Hyporeactivity to sensory information explained most of the EF problems. CONCLUSION: Clinicians should be aware of differences in sensory experiences between adults on the spectrum and non-autistic adults and differences between men and women during assessment and subsequent counselling.

Investigating the development of the autonomic nervous system in infancy through pupillometry.

We aim to investigate early developmental trajectories of the autonomic nervous system (ANS) as indexed by the pupillary light reflex (PLR) in infants with (i.e. preterm birth, feeding difficulties, or siblings of children with autism spectrum disorder) and without (controls) increased likelihood for atypical ANS development. We used eye-tracking to capture the PLR in 216 infants in a longitudinal follow-up study spanning 5 to 24 months of age, and linear mixed models to investigate effects of age and group on three PLR parameters: baseline pupil diameter, latency to constriction and relative constriction amplitude. An increase with age was found in baseline pupil diameter (F(3,273.21) = 13.15, p < 0.001, [Formula: see text] = 0.13), latency to constriction (F(3,326.41) = 3.84, p = 0.010, [Formula: see text] = 0.03) and relative constriction amplitude(F(3,282.53) = 3.70, p = 0.012, [Formula: see text] = 0.04). Group differences were found for baseline pupil diameter (F(3,235.91) = 9.40, p < 0.001, [Formula: see text] = 0.11), with larger diameter in preterms and siblings than in controls, and for latency to constriction (F(3,237.10) = 3.48, p = 0.017, [Formula: see text] = 0.04), with preterms having a longer latency than controls. The results align with previous evidence, with development over time that could be explained by ANS maturation. To better understand the cause of the group differences, further research in a larger sample is necessary, combining pupillometry with other measures to further validate its value.

Mental health of autistic adults during the COVID-19 pandemic: The impact of perceived stress, intolerance of uncertainty, and coping style.

LAY ABSTRACT: More and more research shows us that autistic individuals are at risk of experiencing mental health problems in response to the COVID-19 pandemic. However, little is known about why this is the case. At two timepoints during the pandemic, we asked 149 autistic and 147 non-autistic adults about feelings of anxiety, depression, and stress, and about characteristics that may explain why some (autistic) people have a larger chance of developing anxiety and depression during this pandemic. In our study, autistic adults experienced more anxiety and depression than non-autistic adults. Across autistic and non-autistic individuals, the people who experienced more stress at timepoint 1 experienced more anxiety and depression 4 months later. This was especially the case for those individuals who use maladaptive coping styles, such as denial or venting, and for those who have difficulties dealing with uncertain situations. Our findings show the burden of the COVID-19 pandemic on the mental health of autistic adults. Interventions to support autistic adults during and after the pandemic are needed, and they may want to focus on the negative impact of stress and teach autistic (and non-autistic) adults more adaptive ways to cope with stressful circumstances.

Impact of the COVID-19 Pandemic on Daily Life: Diverse Experiences for Autistic Adults.

Using a mixed methods design, this study aimed to examine the impact of the COVID-19 pandemic on autistic and non-autistic adults. We conducted an online survey with 196 autistic and 228 non-autistic adults from Belgium, the Netherlands and the United Kingdom focusing on their experiences during the first period of the pandemic. Our results indicate rather diverse experiences within the group of autistic participants across all domains of life. In comparison with non-autistic adults, autistic adults reported less negative impact on their social life and more negative impact on health and support services. In the autism group, stress was mainly related to changing and unclear measures. A wide range of coping strategies were described as helpful in reducing stress during the pandemic.

Conceptualization of quality of life in autistic individuals.

The present study examines to what extent two core characteristics of the quality of life (QoL) construct were incorporated in the field of autism: (1) its subjective nature; and (2) its multidimensionality. Therefore, we reviewed 174 articles examining QoL in individuals with autism. The review showed parents reporting a lower QoL compared with autistic individuals themselves, especially on internal domains. This may suggest different expectations about what a good QoL may entail. Such an underestimation of QoL by others is commonly observed in individuals with disabilities (the so-called 'disability paradox'). For the multidimensionality of the QoL construct, our findings suggest that the narrower (and more unidimensional) construct of health-related QoL is often measured instead of QoL. Additionally, a substantial proportion of items did not measure QoL, but they evaluated characteristics that may or may not have an impact on QoL. Researchers and clinicians should be aware that QoL domains are selected and operationalized differently by different instruments. QoL may benefit from an exclusive focus on subjective aspects, which can be measured alongside more normative, objective characteristics of individuals or their environment.

Structural and contextual priors affect visual search in children with and without autism.

Bayesian predictive coding theories of autism spectrum disorder propose that impaired acquisition or a broader shape of prior probability distributions lies at the core of the condition. However, we still know very little about how probability distributions are learned and encoded by children, let alone children with autism. Here, we take advantage of a recently developed distribution learning paradigm to characterize how children with and without autism acquire information about probability distributions. Twenty-four autistic and 25-matched neurotypical children searched for an odd-one-out target among a set of distractor lines with orientations sampled from a Gaussian distribution repeated across multiple trials to allow for learning of the parameters (mean and variance) of the distribution. We could measure the width (variance) of the participant's encoded distribution by introducing a target-distractor role-reversal while varying the similarity between target and previous distractor mean. Both groups performed similarly on the visual search task and learned the distractor distribution to a similar extent. However, the variance learned was much broader than the one presented, consistent with less informative priors in children irrespective of autism diagnosis. These findings have important implications for Bayesian accounts of perception throughout development, and Bayesian accounts of autism specifically. LAY SUMMARY: Recent theories about the underlying cognitive mechanisms of autism propose that the way autistic individuals estimate variability or uncertainty in their perceptual environment may differ from how typical individuals do so. Children had to search an oddly tilted line in a set of lines pointing in different directions, and based on their response times we examined how they learned about the variability in a set of objects. We found that autistic children learn variability as well as typical children, but both groups learn with less precision than typical adults do on the same task.

8p21.3 deletions are rare causes of non-syndromic autism spectrum disorder.

A de novo 0.95 Mb 8p21.3 deletion had been identified in an individual with non-syndromic autism spectrum disorder (ASD) through high-resolution copy number variant analysis. Subsequent screening of in-house and publicly available databases resulted in the identification of six additional individuals with 8p21.3 deletions. Through case-based reasoning, we conclude that 8p21.3 deletions are rare causes of non-syndromic neurodevelopmental and neuropsychiatric disorders. Based on literature data, we highlight six genes within the region of minimal overlap as potential ASD genes or genes for neuropsychiatric disorders: DMTN, EGR3, FGF17, LGI3, PHYHIP, and PPP3CC.

Ethics of returning children's individual research findings: from principles to practice.

Little ethical recommendations on returning children's individual research findings are available for researchers in behavioral sciences, especially when compared to genetic research. Anecdotic evidence suggests that since parents are often interested in their child's individual research findings, researchers tend to offer this information as a form of compensation for research participation. Despite good intentions, these practices are not without potential harmful consequences for children. We were confronted with these difficulties and with the paucity of available guidance on this topic, being involved in a longitudinal, infant development study, i.e. tracking infants at risk for autism (TIARA). First, we review current ethical recommendations and discuss their limitations in the light of the TIARA study. Second, we will suggest to revise these recommendations, by identifying and applying the relevant bioethical principles and concepts at hand. Third, as an example of practical implementation, the adopted 'return of research findings'-policy for the TIARA-study is presented. The principles and concepts we engage with are the ancillary care responsibilities of the researcher, non-maleficence and beneficence, the right to an open future of the child, and the avoidance of therapeutic misconception. Ultimately, we present the concrete return of research findings policy implemented in the TIARA-study. Here, we suggest restricting the systematic return of children's individual research findings to cases where findings are considered clinically significant and actionable for the child. We discuss the broader implications for designing and conducting research in behavioral sciences with children.

The complexity of early diagnostic decision making: A follow-up study of young children with language difficulties.

Background & aims: Due to the complexity of early diagnostic decision making, we examined the predictive value of an early diagnostic classification and early abilities on later best estimate diagnosis for 22 clinically referred children with language difficulties. Methods and procedures: Four years after initial evaluation (Time 1), the clinical files of these children were reviewed. A best-estimate (BE) diagnosis of language disorder (LD), intellectual disability (ID), or autism spectrum disorder (ASD) was established, with ASD being most common. Outcomes and results: Early clinical classifications were relatively unstable or difficult to establish at a young age. The magnitude of children's cognitive and receptive language delay was a significant predictor of a later BE diagnosis of ID and LD respectively. A BE diagnosis of ASD, by contrast, could not be predicted from children's early social communication problems nor the presence of restricted and repetitive behaviors and interests. Conclusions: Taken together, the results of this study suggest that language difficulties can be an early marker of a neurodevelopmental disorder which is often not identified at the age of first referral. Implications: Eligibility for treatment should, therefore, be based on biopsychosocial case formulation rather than DSM or ICD diagnostic classification. What this paper adds?: In this study a dimensional approach was used to characterize the abilities of young children referred with mild to profound receptive and/or expressive language difficulties. Later on, a categorical approach was adopted to establish best estimate diagnoses. Our clinical, broadly defined sample reflects the heterogeneous intake of young children referred for diagnostic assessment. Other studies on diagnostic stability often only focus on one diagnostic category (and are explicitly excluding children with specific other diagnoses), not taking into account the difficulties of early differential diagnostic decision making and stability across different categories over time. Investigations of differential diagnosis within a clinical group, instead of only differentiating children with a specific diagnosis from typically developing children, may be more informative for clinicians.

How well are DSM-5 diagnostic criteria for ASD represented in standardized diagnostic instruments?

Five years after the publication of DSM-5 in 2013, three widely used diagnostic instruments have published algorithms designed to represent its (sub-)criteria for Autism Spectrum Disorder (ASD) in children and adolescents. This study aimed to: (1) establish the content validity of these three DSM-5-adapted algorithms, and (2) identify problems with the operationalization of DSM-5 diagnostic criteria in measurable and observable behaviors. Algorithm items of the Autism Diagnostic Observation Schedule-Second Edition (ADOS-2), Developmental, Dimensional and Diagnostic Interview (3di) and Diagnostic Interview for Social and Communication Disorders-11th edition (DISCO-11) were mapped onto DSM-5 sub-criteria. The development and decision-making rules integrated in their algorithms were then compared with DSM-5. Results demonstrated significant variability in the number and nature of sub-criteria covered by the ADOS-2, 3di and DISCO-11. In addition to differences in the development of algorithms and cut-off scores, instruments also differed in the extent to which they follow DSM-5 decision-making rules for diagnostic classification. We conclude that such differences in interpretation of DSM-5 criteria provide a challenge for symptom operationalization which will be most effectively overcome by consensus, testing and reformulation.

Features of Flemish Emerging Adults and their Association with Demographic Markers.

As the Inventory of Dimensions of Emerging Adulthood (IDEA) was developed to assess features of emerging adulthood, international differences have been observed between emerging adults over the world. To assess the IDEA's applicability to emerging adults in Flanders, a Dutch translation was administered to 489 participants between 17 and 26 years old, and exploratory and confirmatory factor analyses were performed. Important latent factors in the version used in the United States of America, such as focus on others, were not observed. Four subscales were created to reflect psychological features of our sample, combining elements of both Arnett's theory of emerging adulthood and neo-Eriksonian theories of identity development. A new subscale, reflecting commitment and responsibility, was more present in older participants and employed participants, and associated with well-being. Finally, results suggested that employment, as well as place of residency, and romantic relationships significantly influence psychological development during young adulthood.

Ventral stream hierarchy underlying perceptual organization in adolescents with autism.

Object recognition relies on a hierarchically organized ventral visual stream, with both bottom-up and top-down processes. Here, we aimed at investigating the neural underpinnings of perceptual organization along the ventral visual stream in Autism Spectrum Disorders (ASD), and at determining whether this would be associated with decreased top-down processing in ASD. Nineteen typically developing (TD) adolescents and sixteen adolescents with ASD participated in an fMRI study where they had to detect visual objects. Five conditions displayed Gabor patterns (defined by texture and/or contour) with increasing levels of perceptual organization. In each condition, both groups showed similar abilities. In line with the expected cortical hierarchy, brain activity patterns revealed a progressive involvement of regions, from low-level occipital regions to higher-level frontal regions, when stimuli became more and more organized. The brain patterns were generally similar in both groups, but the ASD group showed greater activation than TD participants in the middle occipital gyrus and lateral occipital complex when perceiving fully organized everyday objects. Effective connectivity analyses suggested that top-down functional connections between the lower levels of the cortical hierarchy were less influenced by the meaning carried by the stimuli in the ASD group than in the TD group. We hypothesize that adolescents with ASD may have been less influenced by top-down processing when perceiving recognizable objects.

Do Parental Interviews for ASD Converge with Clinical Diagnoses? An Empirical Comparison of the 3di and the DISCO in Children with ASD, a Clinically-Referred Group, and Typically Developing Children.

Two semi-structured parental interviews are available with algorithms developed to measure DSM-5 criteria of ASD, namely the Developmental, Dimensional and Diagnostic Interview (3di) and the Diagnostic Interview for Social and Communication Disorders (DISCO-11). The main aim of this study was to examine the agreement between classification according to both interviews, and their convergence with the clinical diagnosis. Therefore, the 3di and DISCO-11 were administered from three groups of parents of a 4-18 year old. Results showed 75% agreement between both instruments, but in the ASD group only 16% of the children scored above threshold on both instruments. Exploratory analyses suggested that the 3di failed to detect rigid and repetitive behaviors, whereas the DISCO-11 was insufficiently sensitive in detecting socio-communicative problems.

Problem behavior in young children referred with language difficulties: Relations to language and intentional communication.

Background and aims: This exploratory study aims to examine the relative contribution of language and intentional communication to internalizing and externalizing problem behavior. Methods: Twenty-nine Dutch-speaking children (age range 24-46 months) referred with language difficulties participated in this study. For the majority of children, these early language difficulties appeared to be part of a broader neurodevelopmental disorder, mainly autism spectrum disorder. Parent ratings on the Achenbach Child Behavior Checklist 1½-5 were predicted from children's language level and intentional communicative abilities, the latter being assessed by both parent report and direct observation. In all series of hierarchical regression analyses, chronological age and nonverbal mental age were included as covariates. Results: Parents commonly reported withdrawal, emotionally reactive behavior, attention problems, and aggressive behavior. Parent-rated intentional communication was the most important predictor of internalizing problem behavior and played an important role in the prediction of aggressive behavior as well. However, chronological age and/or nonverbal mental age also predicted parent-rated levels of externalizing problem behavior, especially attention problems. Conclusions: The relation between language difficulties and problem behavior may be influenced by maturation and children's ability to communicate intentionally.Implications: Language proficiency should, therefore, be independently assessed from children's intentional communicative abilities which, in turn, may differ across contexts.

Parenting Strategies Used by Parents of Children with ASD: Differential Links with Child Problem Behaviour.

Here, we explored the structure of the 'Parenting Strategies Questionnaire', a new scale designed to measure parenting strategies for problem behaviour in ASD. We then examined links between child behaviour and parenting in a sample of 222 predominantly-UK parents of ASD children exhibiting behaviour found difficult or challenging. Analysis revealed three parenting subscales: Accommodation, Reinforcement Approaches and Reducing Uncertainty. Both Accommodation and Reducing Uncertainty were linked to child problem behaviour. Child factors explained up to 29% of the variance in Accommodation, with Socially Inflexible Non-compliance the strongest predictor, and up to 24% of the variance in Reducing Uncertainty, with Intolerance of Uncertainty the strongest predictor. Child factors were not related to Reinforcement Approaches. Longitudinal studies investigating these relationships are needed.

Describing the Profile of Diagnostic Features in Autistic Adults Using an Abbreviated Version of the Diagnostic Interview for Social and Communication Disorders (DISCO-Abbreviated).

The rate of diagnosis of autism in adults has increased over recent years; however, the profile of behaviours in these individuals is less understood than the profile seen in those diagnosed in childhood. Better understanding of this profile will be essential to identify and remove potential barriers to diagnosis. Using an abbreviated form of the Diagnostic Interview for Social and Communication Disorders, comparisons were drawn between the profile of a sample of able adults diagnosed in adulthood and the profile of a sample of able children. Results revealed both similarities and differences. A relative strength in non-verbal communication highlighted a potential barrier to diagnosis according to DSM-5 criteria for the adult sample, which may also have prevented them from being diagnosed as children.