The prevalence of autism spectrum disorder (ASD) is currently estimated to be 1 in 36 children. While much is known about the impact of ASD on family and community functioning as well as treatment outcomes, less is known about a relatively new categorization of ASD, called "profound autism."

To describe the types and frequency of developmental and psychiatric conditions (DPCs) in early school-age children who were diagnosed with ASD as toddlers and to compare rates of DPCs in children whose ASD persists ("persistent ASD") versus those in whom it does not ("non-persistent ASD"). Children with a clinical ASD diagnosis at 12-36 months old underwent a research assessment at 5-7 years old. Research assessments included measures of ASD symptoms and cognitive and adaptive functioning. A research psychologist assigned an ASD diagnosis (yes or no) based on the child's current functioning. Information about DPCs was obtained from parent and/or research psychologist report. Intellectual disability was defined as cognitive standard score < 70. Of the 213 children diagnosed with ASD at initial clinical assessment, at the research assessment 134 (62.6%) had persistent ASD and 79 (37%) had non-persistent ASD. Overall, the most common DPCs were ADHD (n = 58; 27.2%); speech disorder (n = 46; 21.6%); and intellectual disability (n = 46; 21.6%). Of children with non-persistent ASD, 29.1% had ≥ 1 DPC, and 19% had ADHD. Children with persistent ASD were over 5 times more likely (OR = 5.72) to have an additional DPC, compared to those with non-persistent ASD. Children with non-persistent ASD may manifest several different DPCs, with an increased rate of ADHD compared to population norms. Children with persistent ASD have higher rates of DPCs than those with non-persistent ASD. Follow-up care for children diagnosed with ASD at a young age should include assessment for other DPCs.

Adults with autism spectrum disorder (ASD) often experience co-occurring physical and mental health challenges throughout their lives. At the same time, they frequently face many barriers to accessing proper care. Strategies to improve communication and understanding can help to mitigate some of these barriers. This study examined the effects of an instructional package, including a video module accompanied by guided notes, the Autism Healthcare Accommodations Tool (AHAT), and behavior skills training (BST) to teach adults with autism to communicate their unique needs and request accommodations to a medical provider. Three participants independently completed a self-guided video module that modeled how to complete the guided notes and AHAT to identify appropriate accommodations and prepare for a doctor's appointment. Once finished, participants were taught to verbalize their needs and accommodations through BST. Results showed that participants' communication skills increased after introducing the instructional package, generalized to a novel provider and maintained once the instructional package was removed. This intervention proved to be an effective and socially valid method to improve communication for adults with autism in medical settings. Implications and suggestions for future research are discussed.

Studies suggest that parents' emotional availability (EA) is associated with children's wellbeing, including in the case of children with autism. Our study extended prior research by examining the role of parents' representations in fostering parental EA and by focusing on fathers and on children with autism and severe behavior problems. We expected that parents' positive representations would be associated with higher EA and compared mothers' and fathers' representations and EA. Participants were 79 mothers and 69 fathers (child age range = 61-173 months, 21.95% girls). Representation assessments included the Reaction to Diagnosis Questionnaire, tapping resolution with respect to the child's diagnosis, and the coherence and positive comments in parents' Five Minute Speech Samples about the child. Parents' EA was coded from parent-child play interactions. Controlling for children's autism symptoms and adaptive functioning, mothers' resolution with respect to the child's diagnosis and positive comments (but not coherence) were associated with their EA, and fathers' coherence (but not positive comments and resolution) was associated with their EA. Mothers expressed more positive comments than fathers, and the resolution and EA scores of mothers and fathers were significantly correlated. Our results highlight the importance of considering both parents' representations and EA when studying and working with families of children with autism and severe behavior problems.

The aim was to investigate trait social anxiety and social evaluative stress in autistic children and adolescents and Specific Learning Disorders (SLD). This was done by evaluating behavioral, subjective, and autonomic responses to the Trier Social Stress Test (TSST). Study 1 included 280 children and adolescents: 60 autistic without intellectual disability (ID), 70 SLD, and 150 non-diagnosed (ND) peers. Study 2 involved 55 participants: 15 autistic without ID, 15 SLD, and 20 ND. The sample was predominantly male. In Study 1, behavioral (quality of public speech) and subjective (valence, arousal, perceived competence, and worries) aspects of social stress were examined. Study 2 expands upon the first study, as physiological responses to social stress were also measured. Trait social anxiety was investigated using both parents' and children's reports in the two studies. Parents of autistic participants and with SLD reported higher trait social anxiety in their children than the parents of ND. No differences emerged from the participants' self-reports, though those autistic and with SLD were assigned lower scores in the public speech quality than ND. Autistic children and adolescents reported lower arousal and higher perceived competence than ND, while those with SLD reported a lower perception of competence. Autistic participants had a decreased cardiac reactivity across the TSST when compared to SLD and ND. Our findings show unique patterns of responses within each group, confirming that the combined investigation of trait anxiety and social stress responses could be a valuable insight in research and clinical practice.

Currently there are no instruments designed to assess parents' acceptance and understanding of their autistic child. We aimed to develop and evaluate the reliability and validity of a parent-report scale assessing parents' acceptance and understanding of their autistic child - the Parental Acceptance and Understanding of Autistic Children Scale (PAUACS). A total of 158 parents (74 non-autistic, 42 autistic, 42 questioning; mean age 42.69 years) of autistic children (mean age 10.80 years) completed an online survey comprising the prototype PAUACS as well as validated measures of parental sensitivity, neurodiversity affirming attitudes, autistic traits, mental health, and child adjustment and family experience. A subsample of participants (n = 97; 61.4%) completed the PAUACS questionnaire a second time, 2 weeks later, to assess for test-retest reliability. The final 30-item scale demonstrated excellent internal reliability (α = 0.89) and test-retest reliability (intraclass correlation = 0.92). Exploratory factor analysis revealed a clean structure comprising four distinct factors: Understanding (α = 0.86), Innate (α = 0.74), Acceptance (α = 0.82), and Expectations (α = 0.73). Overall, the PAUACS demonstrates good construct validity. Preliminary evidence of convergent validity and divergent validity was demonstrated. Preliminary evidence suggests PAUACS is a reliable and valid tool in assessing parents' acceptance and understanding of autistic children.

Autistic adults are at high risk for mental health challenges, yet there has been limited research on mental health interventions for this population. Individual differences in how thoughts and emotions are perceived may directly relate to the success of specific therapy strategies. This study examined whether alexithymia and inner thinking patterns relate to helpfulness and ease of use of mental health therapy strategies among autistic adults.

The COVID-19 pandemic stretched between 2020 and 2021 and witnessed impactful changes in the education system inclusive of the special education sector. The special education sector selected online teaching-learning to continue the studies of their students with the help of the parents. The study aimed to find out the challenges faced by parents of people with autism enrolled in special schools who attended online classes along with their children and supported their teaching-learning. The mixed method study (sequential explanatory design) opted for quantitative phases followed by a qualitative phase for further in-depth exploration of the focus area. The quantitative phase consists of 100 participant parents and the qualitative phase consists of 15 participant parents recruited from phase one of the study through purposive sampling based on the inclusion and exclusion criteria. The data were collected via web forms and online interviews were recorded. The univariate analysis was used for the quantitative phase whereas thematic analysis was used for the qualitative phase. The parents had to manage office work, childcare, assisting in online classes, handling the psychological and behavioral issues of the child. Even challenges like learning new technology, managing additional expenses and personal stress were reported. The enormous efforts of the parents helped to overcome many of the challenges and achieve positive learning outcomes. Nevertheless, some recommendations like arrangement of parental workshops, increase in tech education and occasional hybrid mode of learning is suggested.

Lockdown imposed by the COVID 19 pandemic increased the time families spent together at home. A negative impact of the lock-down on children with autism has been reported. Few studies described the positive impact of parents' presence on the severity of their children's autism symptoms during lockdown. To describe the positive impact of the COVID-19 lockdown on the evolution of Children' Symptoms with autism and parents' emotional status and to determine which variables had a positive or negative impact on the severity of autism features in Kinshasa. From April 15 to July 15, 2020, we analyzed the evolution of core symptoms of 68 children with autism and correlated these findings with the presence of a parent at home during lockdown. We performed multivariate logistic regression to assess the factors associated to autism symptoms improvement after adjustment by sex, age at ASD diagnosis, education, parent occupation, child's occupancy time, presence of parent's depression, and presence of comorbidities and core symptoms in children. Parents reported ASD symptom improvement in 42.6% of children. Factors positively associate with ASD symptoms improvement were presence of a parent for more than 8 h per day, improvement of social communication and autonomy. In contrast, severe to moderate depression in parents and presence of main comorbidities in children were associated with more severe autistic symptoms in their children. The presence of a parent at home, improved child communication and autonomy improved autism symptoms. On the other hand, parental depression and comorbidities in children with ASD aggravated the symptoms during lockdown in Kinshasa/DRC. These findings emphasize the importance of the physical presence of parents as well as the length of time they spend with their children with ASD. In addition, they show that depressive feelings in parents and comorbidities in ASD have a negative impact in the severity of their symptoms during lockdown.

Autism and social anxiety (SA) share behavioral features like reduced eye contact, variable social attention, and differences in social interactions. However, the impact of the co-occurrence of these conditions (e.g., autism with co-occurring SA) on social attention remains unknown. Therefore, we evaluated whether the degree of SA characteristics in autistic youth modulated (e.g., amplified or lessened) a core hallmark feature of autism: social attention, or looking at faces. Fifty-four autistic and 35 non-autistic children and adolescents completed a gaze-contingent eye-tracking (ET) paradigm, in which faces dynamically expressed happy or fearful expressions contingent on participant eye contact. SA characteristics were assessed via standardized self- and parent-report measures. Social attention was measured by calculating the average percent looking time at the face and eye regions of each emotional expression. Autistic participants looked less at faces than non-autistic participants, and higher self-report SA was associated with less looking at eyes in both autistic and non-autistic participants. SA features affect social attention similarly in autistic and non-autistic youth, highlighting the importance of considering co-occurring psychiatric characteristics when assessing social attention and eye contact in autistic individuals.

This study investigated the categorical perception (CP) of linguistic pitch (lexical tones) and nonlinguistic pitch (pure tones), as well as tonal production in Mandarin-speaking children with autism spectrum disorders (ASD). A total of 26 Mandarin-speaking children with ASD and 29 age-matched typically developing (TD) children were recruited for this study. The Mandarin T2-T3 contrast and corresponding pure tones with identical pitch contours were adopted to assess the nuanced pitch processing abilities of the child participants via the CP paradigm. Accordingly, tonal production was focused on T2 and T3 with analyses of the dynamic pitch contours and tonal differentiation. Mandarin-speaking children with ASD exhibited atypical CP for linguistic pitch in comparison with their TD peers. However, the categorization of linguistic pitch exceeded that of nonlinguistic pitch among the ASD participants, indicating a global over local processing pattern contrary to autistic individuals in non-tonal languages. Additionally, despite atypical pitch contours in producing T2 and T3, the ASD group showed comparable differentiable degrees of the two tones in production to the TD group. Findings of this study served as a foray into contesting current theories' claims of local bias and/or global impairment in the autistic population, prompting further inspections on individuals with different language backgrounds and stimuli processing with various complexities. Additionally, findings of this study underscore the necessity of developing tailored assessments and interventions to enhance the perception and production of complex and confusable tones, thereby improving perceptual robustness and communication skills in Mandarin-speaking children with ASD.

The National Institute of Mental Health created the National Database for Autism Research (NDAR) to accelerate autism knowledge through data sharing and collaboration. However, our experience using NDAR reveals systematic challenges across several aspects of data submission, selection, management, and analysis that limit utility of this resource. We describe our NDAR experience in an ongoing project examining autism intervention outcomes among marginalized racial, ethnic, and gender groups. For this study, we planned to gather data from NDAR to conduct an individual participant data meta-analysis. Eighteen studies met inclusion criteria and reported data on participants at more than one point in time on the Vineland Adaptive Behavior Scales (Vineland) and the Autism Diagnostic Observation Schedule (ADOS). The difficulties with submitting, selecting, downloading, and managing data from NDAR posed limitations on data availability and analysis. Of the 3,850 unique participants in the selected studies, data at multiple time points were available for 312 participants on the Vineland and 278 on the ADOS. No participants had data on all assessment domains. To accelerate autism research via data sharing and collaboration with NDAR necessitates improving the processes for submitting, selecting, and managing data.

Although participating in research is often presented as something that can 'help others in the future', research participants may also benefit from accessing and understanding their own research data. However, participant attitudes toward receiving individual data via research reports are under researched. This study examined participant perceptions of research reports within the context of the pilot phase of the Pediatric Autism Research Cohort (PARC) Study. PARC Study participants included caregivers of children with a recent diagnosis of autism, completing questionnaires on their child's symptoms and behaviours at six-month intervals for two years. Following completion of each timepoint, participants received a research summary report with information on their own child's developmental progress. Participants were invited to give feedback on their use of the reports after the pilot study.

The current study evaluates whether college students can identify characteristics of autism as diagnostic for autism, and characteristics of other disabilities as not diagnostic for autism. This study also examines metacognitive awareness of autism knowledge, evaluating whether college students can accurately calibrate their confidence in their beliefs about autistic characteristics. 283 college students completed the Autism Symptomatology Knowledge Assessment (McMahon et al. Research in Autism Spectrum Disorders 71:101499, 2020). In this assessment, participants were presented with characteristics of autism and other disabilities and asked to identify which characteristics could be used to diagnose someone with autism. For each characteristic, participants indicated how certain they were in their response. Participants more accurately categorized characteristics of autism, particularly social interaction and communication challenges, as being consistent with an autism diagnosis. Participants had more difficulty identifying that characteristics of other disabilities, especially anxiety, ADHD, and learning disabilities, were not diagnostic for autism. For autistic characteristics, participants' confidence and accuracy were positively correlated, such that participants who responded accurately were more confident in their response than those who responded inaccurately. For other disability characteristics, confidence and accuracy were typically not correlated or inversely correlated, indicating poor metacognitive awareness. College students confuse autism with other disabilities, which may have important implications in real-world contexts. Furthermore, individuals with poor metacognitive awareness of their autism knowledge may not realize that they are confusing autism with other disabilities, such that they may not seek out additional corrective information about autism.

Licensure is an option for some autistic adolescents and families that increases mobility by enabling independent travel to employment, school, and social activities. The objective of this study was to identify current strategies used by healthcare providers (HCPs) in their guidance to autistic adolescents and families on the transition to independent driving. Semi-structured interviews were conducted with 15 HCPs. The team's previous research, literature review and expert feedback informed the development of the interview guide. A content analysis approach was used in the coding of transcripts, nine of which were double coded. Study team members reviewed coded transcripts, provided and discussed narrative summaries, and identified themes. Interviews were conducted with physicians, social workers, psychologists, therapist and a nurse practitioner. HCP identified their perceptions of autistic adolescents' strengths and weaknesses to be addressed in their individualized approaches. They described using clinical interactions as time to address licensure and driving, but also referred to specialists as needed. HCPs described using existing resources, but also provided a wish list of future resources. HCPs use an individualized approach for guidance in the transition to independent driving, considering the unique needs of autistic adolescent patients and families. These HCPs identified a clear need for tailored resources and guidance they can use in support of independent driving when appropriate for their patients and families.

Autistic adolescents frequently encounter difficulties in managing changes associated with puberty, sexuality, and relationships, and parents may be a useful source of sexual and reproductive health education (SRE) for this population. Despite this, few evidence-based programs exist to support parents in this role. Thus, there is a need for the development of such programs, particularly those incorporating the lived experiences of key stakeholders. The present qualitative investigation aimed to determine the SRE needs of autistic youth and to inform a novel, parent-led SRE program. Data were collected through semi-structured interviews conducted with two rounds of focus groups with two stakeholder groups: parents of autistic children (N = 4) and adult autistic self-advocates (N = 4). Focus groups were recorded and transcribed verbatim. The research team conducted rapid qualitative analysis on all four transcripts, and major findings were summarized and triangulated across groups. Four overarching themes were identified: "Empower parents as educators," "Individualize supports and education," "Consider cultural and intersecting identities," and "Prioritize safety." Parents can serve a primary role in providing SRE to autistic youth and would likely benefit from participating in a tailored program that prioritizes safety and considers the influence of culture and other aspects of identity on content delivery. Future research on the implementation of such a program is needed.

A growing body of research shows that children with autism exhibit selective limitations in their ability to direct their visual attention to social stimuli. The cause of this selective limitation, however, remains unknown. The main purpose of this study is to determine whether the limitations in social attention are influenced by the objects in the environment. Specifically, the study examines the differences in visual attention between children with autism and typically developing (TD) children as they view videos of social interactions under two conditions, with and without objects. The sample consisted of 53 children with autism and 74 TD children, aged between 18 and 36 months. The findings indicated that young children with autism exhibited differences in their social attention compared to their TD peers. The results revealed that the presence of objects did not affect the visual attention differences between the two groups. However, removing objects from the environment positively impacted the social attention of both groups. In the condition without objects, both groups directed more visual attention more toward the Face and Body Areas of Interests (AoIs), whereas in the condition with objects, both groups prioritized looking at the Toy AoI. These findings have important implications for evidence-based decision-making, especially in designing early intervention environments for children with autism.

This study adopts a person-centered approach to evaluate personality diversity as a source of interpersonal variability in autistic children and adolescents, and how personality subgroup membership relates to variability in autistic characteristics, social-emotional presentations, and parenting outcomes. Latent Profile Analysis was used to analyze 569 parent reports on a child-based Five-Factor-Model personality measure (aged 6-18 years; M = 11.8 years, SD = 3.1; 70% boys). Four distinct personality profile groups were identified, showing varying levels in the low to average range of all five personality domains. All groups scored lowest on Extraversion and Emotional Stability. They differed the most in Imagination and the least in Emotional Stability. Group 1 (n = 72) exhibited the lowest mean-level scores on all five domains, whereas Group 4 (n = 90) had the highest domain scores. Group 2 (n = 307) and Group 3 (n = 100) showed more diverse patterns. Group membership was meaningfully associated with variation in characteristics of social interaction and communication, internalizing, externalizing, and attentional problems, psychosocial strengths, and positive parenting strategies. Only modest group differences were found in parenting stress. All groups had similar scores on repetitive and restrictive behaviors. These findings help to better understand and support natural subgroups within the autism phenotype by exploring shared personality attributes.

Common ground (CG)-a pragmatic capability that reflects the construction of shared meaning by two interlocutors during conversation-is widely accepted as crucial for effective communication, but its exploration has been limited in the context of children's peer-to-peer interaction. Specifically, this study aimed to explore CG differences between typically developing (TD) and autistic populations, CG's developmental trajectories, as well as the link between CG and motor coordination skills during peer interactions. Study participants included 148 children (6-16 years), comparing 64 TD and 84 autistic children across three age levels. Fixed dyads matched on IQ, age, sex, and mother's education performed a CG tangram-card task and complementary joint action (JA) tasks to evaluate peer-to-peer movement coordination. Individual motor skills were also assessed. As expected, both autistic and TD groups showed increasing efficacy over the 6-turn CG task (fewer words and shorter duration to communicate), although autistic participants were less efficient than TD participants. Better motor skills and JA synchronization correlated with both groups' more efficient CG performance. Additionally, the indirect relationship between group (TD/autism) and CG was mediated by motor skills and JA, with age moderating the relationship between JA and CG. Specifically, better motor skills and socio-motor coordination were associated with more efficient CG creation, particularly in younger children (under 10 years). These findings suggest potential novel avenues for early interventions targeting motor and language challenges in autism to enhance pragmatic abilities and peer interactions, offering insights into language development in this population.