Alcohol Use Patterns Among Underage Autistic and Non-Autistic Youth.

PURPOSE: We explored factors predicting repeated or hazardous alcohol use among autistic and non-autistic U.S. youth ages 16 to 20 years. METHODS: Autistic (n = 94) and non-autistic (n = 92) youth completed an online survey. By design, half of each group reported past-year alcohol use. We compared drinking patterns for autistic and non-autistic youth, and within each group between abstinent or infrequent drinkers (0-1 drinking episodes in past year) versus those who drank 2 + times in past year. RESULTS: Autistic (vs. non-autistic) youth who drank did so less frequently and consumed fewer drinks per occasion. However, 15% of autistic youth who drank in the past year reported heavy episodic drinking and 9.3% screened positive for AUDIT-C hazardous drinking. For autistic youth only, a diagnosis of depression, bullying or exclusion histories were positively associated with drinking 2 + times in the past year. Autistic youth who put more effort into masking autistic traits were less likely to report drinking 2 + times in the past year. As compared to non-autistic youth, autistic participants were less likely to drink for social reasons, to conform, or to enhance experiences, but drank to cope at similar rates. CONCLUSION: Repeated and hazardous underage alcohol occur among autistic youth. Targeted prevention programs designed to address the specific drinking profiles of autistic youth are needed.

Reductions in Depression and Anxiety Among Autistic Adults Participating in an Intervention to Promote Healthy Relationships.

IMPORTANCE: Some autistic adults experience depression and anxiety related to their social relationships. There is a need for evidence-based occupational therapy interventions that decrease depression and anxiety and improve the health of social relationships for autistic adults. OBJECTIVE: To determine the feasibility and preliminary effectiveness of the Healthy Relationships on the Autism Spectrum (HEARTS) intervention, a six-session, group-based psychoeducational intervention for the improvement of relationship health. DESIGN: One-group pretest-posttest design with a 3-mo follow-up after baseline. SETTING: United States; online intervention through community organization. PARTICIPANTS: Fifty-five adults, ages 20 to 43 yr, with a professional or self-diagnosis of autism and the capacity to independently participate in an online, group-based, participatory class. INTERVENTION: Participants received 6 90-min weekly sessions that addressed healthy relationship topics, including recognizing abuse, meeting people, maintaining relationships, setting interpersonal boundaries, neurohealth for relationships, and ending relationships. A psychoeducational approach that provided education and involved guided discovery and strategy acquisition was used. OUTCOMES AND MEASURES: All measures were self-administered through an online survey. Depression and anxiety were assessed using instruments from the Patient-Reported Outcomes Measurement Information System. RESULTS: Fifty-five participants completed the intervention. Postintervention scores revealed statistically significant improvements in depression and anxiety. CONCLUSIONS AND RELEVANCE: HEARTS is a promising intervention for improving depression and anxiety among autistic adults and should be investigated further. What This Article Adds: HEARTS offers a potentially effective, nonpharmacological, psychoeducational group-based intervention option to promote healthy relationships for autistic adults. Positionality Statement: This article uses identity-first language (autistic person) in accordance with the preference of autistic self-advocates (Autistic Self Advocacy Network, 2020; Kenny et al., 2016; Lord et al., 2022).

Sexual and reproductive health services for autistic young people in the United States: A conceptual model of utilization.

BACKGROUND: Sexual and reproductive health services promote the ability of people to have safe, satisfying, non-coercive sexual experiences and make informed decisions about pregnancy. Stakeholder input is needed to understand barriers or facilitators to service access for autistic people, who report unmet needs. METHODS: We recruited 18 autistic people, 15 parents, and 15 service providers in the United States to participate in an interview and two surveys. Using their input, we created a conceptual model of sexual and reproductive health service needs, access barriers, and facilitators. RESULTS: Stakeholders rated a variety of sexual and reproductive health services as important for autistic people, including those with intellectual disability or minimal verbal language. Stakeholders identified barriers to sexual and reproductive health service utilization including lack of service availability, lack of service providers with autism or neurodiversity training, lack of accurate information about autism and sexuality, verbal and communication differences that are not accommodated by service providers, and socio-cultural attitudes about sexuality. Stakeholders identified facilitators to service access including person-centered, trauma-informed care, service accommodations such as clear and detailed expectations, and long-enough appointments. We created a conceptual model based on the social ecological model of health to organize these utilization factors and support future research, provider, and policy action. Stakeholders provided feedback and responded favorably on the model's accuracy, utility for spurring research, practice, and policy improvements, and application to diverse groups of autistic people. CONCLUSIONS: The model shows the many feasible ways to support equitable access to services for autistic people.

Using percentiles in the interpretation of Patient-Reported Outcomes Measurement Information System scores: Guidelines for autism.

The objectives of this study were to (1) demonstrate the application of percentiles to advance the interpretation of patient-reported outcomes and (2) establish autism-specific percentiles for four Patient-Reported Outcomes Measurement Information System (PROMIS) measures. PROMIS measures were completed by parents of autistic children and adolescents ages 5-17 years as part of two studies (n = 939 parents in the first study and n = 406 parents in the second study). Data from the first study were used to develop autism-specific percentiles for PROMIS parent-proxy sleep disturbance, sleep-related impairment, fatigue, and anxiety. Previously established United States general population percentiles were applied to interpret PROMIS scores in both studies. Results of logistic regression models showed that parent-reported material hardship was associated with scoring in the moderate-severe range (defined as ≥75th percentile in the general population) on all four PROMIS measures (odds ratios 1.7-2.2). In the second study, the percentage of children with severe scores (defined as ≥95th percentile in the general population) was 30% for anxiety, 25% for sleep disturbance, and 17% for sleep-related impairment, indicating a high burden of these problems among autistic children. Few children had scores at or above the autism-specific 95th percentile on these measures (3%-4%), indicating that their scores were similar to other autistic children. The general population and condition-specific percentiles provide two complementary reference points to aid interpretation of PROMIS scores, including corresponding severity categories that are comparable across different PROMIS measures.

The Autism Intervention Research Network on Physical Health (AIR-P) Research Agenda.

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.

Longitudinal change in parent postsecondary expectations for youth with disabilities.

PURPOSE: Expectations held by parents of youth with disabilities contribute to decision making and planning for adulthood. This study investigated longitudinal stability of parent expectations about the transition to adulthood for youth with disabilities (i.e., likelihood of obtaining postsecondary education, living independently, becoming financially self-sufficient) and how the stability of parent expectations was related to adult outcomes. MATERIALS AND METHODS: Participants were parents of 3640 youth who participated in the National Longitudinal Transition Study-2 (NLTS2) waves 1 and 2 and had available data related to parent expectations. RESULTS: Parent expectations were moderately correlated across waves; however, over one-third of parents changed their expectations across waves, including directional shifts (e.g., changing from thinking they probably will achieve the outcome to probably will not achieve it). Directional shifts in parent expectations between waves 1 and 2 significantly predicted young adult outcomes at wave 5. The children of parents who demonstrated uncertainty, as indicated by directional expectation shifts, were less likely live independently as young adults. Family involvement in the transition process is critical and should continue to be advocated for in both policy and practice. Improved supports may be warranted for families who experience uncertainty.Implications for rehabilitationPractitioners should recognize that parents of youth with disabilities have expectations for their child's transition to adulthood that may change over time and are influenced by factors such as youth age, disability classification, gender, and socioeconomic status.The ways parents' expectations change over time may have lasting implications for their child; specifically, we identified that youth of parents who change their expectations negatively (by shifting to expect less independence) are less likely to attain certain adult milestones.Parents experiencing uncertainty about their youths' postsecondary potential may require additional support and resources to understand their child's strengths and challenges, consider available services, and ultimately to promote more independent outcomes for the youth.

Benefits and Risks: A Systematic Review of Information and Communication Technology Use by Autistic People.

Background: Communication via the internet is a regular feature of everyday interactions for most people, including autistic people. Researchers have investigated how autistic people use information and communication technology (ICT) since the early 2000s. However, no systematic review has been conducted to summarize findings. Objective: This study aims to review existing evidence presented by studies about how autistic people use ICT to communicate and provide a framework for understanding contributions, gaps, and opportunities for this literature. Methods: Guided by the Preferred Reporting Items for Systematic reviews and Meta-Analyses(PRISMA) statement, we conducted a comprehensive review across five databases, searching for studies investigating how autistic youth and adults use ICT to communicate. Authors reviewed the articles for inclusion and assessed methodological quality. Results: Thirty-two studies met the eligibility criteria, including 19 quantitative studies, 12 qualitative studies, and 1 mixed methods study, with data from 3026 autistic youth (n = 9 studies) and adults (n = 23 studies). Ratings suggest that the evidence base is emergent. Underrepresented groups in the sample included autistic women, transgendered autistic people, non-White autistic people, low income autistic people, and minimally speaking and/or autistic adults with co-occurring intellectual disability. Three main themes emerged, including variation in ICT communication use among autistic youth and adults, benefits and drawbacks experienced during ICT communication use, and the engagement of autistic youth and adults in the online autism community. Conclusions: Further exploration of the positive social capital that autistic people gain participating in online autism communities would allow for the development of strengths-based interventions. Additional research on how autistic people navigate sexuality and ICTs is needed to identify mechanisms for reducing vulnerability online. Additional scholarship about underrepresented groups is needed to investigate and confirm findings regarding ICT communication use for gender, racial, and socioeconomic minority groups. Lay summary: What was the purpose of this study?: People use the internet to communicate (talk and connect) with one another. Some research has found that autistic people may prefer to communicate using the internet instead of in person. Over the past 20 years, there has been research about how autistic people use the internet. To understand what research has discovered so far, we collected published research about how autistic youth and adults use the internet to communicate.What did the researchers do?: We used scientific best practices as described in the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines to collect research about how autistic people us the internet to communicate. We included research that uses words (qualitative research) and numbers (quantitative research). First, we searched several places that list research studies to find research on autistic people and the internet. Then, we removed research that did not fit what we were looking for (our criteria). Finally, we then read the full articles, collected their most important findings, and looked for patterns.What do these findings add to what is already known?: Thirty-two studies met our criteria, including 19 studies that used closed-ended survey questions that tested relationships between variables, 12 studies that used open-ended interviews and looked for patterns and connections among participants, and 1 mixed methods study. In total, 3026 autistic youth of ages 10-17 years (number of participants = 9 studies) and adults (number of participants = 23 studies) participated in these 32 studies. We rated each of the 32 studies for quality and learned that the evidence base is preliminary, meaning that more rigorous high-quality studies are needed before we can be confident in the findings. We found three main themes: (1) differences in the ways that autistic youth and adults used the internet to communicate, (2) benefits and drawbacks experienced when using the internet to communicate, and (3) the engagement of autistic youth and adults in the online autism community. Some of the benefits of social media for autistic people include more control over how they talk and engage with others online and a greater sense of calm during interactions. However, findings suggest some drawbacks for autistic people, including continued feelings of loneliness and the desire for in-person friendships. Social media provides opportunities for autistic people to find others on the autism spectrum and form a stronger identity as part of the autism community. The study also showed that there is little research about autistic women, autistic transgender people, autistic racial/ethnic minorities, or autistic people from lower socioeconomic status (SES) groups.What are potential weaknesses of this study?: We only included research in scientific articles, and there may be useful information on this topic in books, student research, or online.How will these findings help young adults on the autism spectrum now or in the future?: This study can help identify gaps and opportunities for new research, support the importance of online autistic communities, and suggest possible training opportunities about how to support autistic people when they use the internet for communication.

INSAR Special Interest Group Report: Stakeholder Perspectives on Priorities for Future Research on Autism, Sexuality, and Intimate Relationships.

The number of empirical studies on sexuality and intimate relationships in autistic people has grown over the last years with the increasing awareness that sexuality and intimate relationships are an important part of life and well-being for autistic people. Further, expression and enjoyment of sexuality is a fundamental, basic human right. This paper reports on needs for future research in this area based on the input of autistic adults, researchers, and other stakeholders (e.g., parents and professionals). Utilizing the nominal group technique, 65 individuals participated in eight groups in which they brainstormed on research questions they deemed most important. Responses were categorized into themes and ranked according to importance based on the level of priority attributed by participants. Findings suggest that future research should focus on developing ways to support sexual and relationship well-being and getting a better understanding of sexuality and relationships in autistic people. Also, attention was drawn to the need for studying the influence of stereotypical societal views, and stigma. Finally, the importance of participatory research to include perspectives of autistic people in research and practice was stressed. LAY SUMMARY: Sexuality and romantic relationships are part of daily life for most people, including autistic people. For this study, groups of autistic people, professionals, and autism researchers discussed which research on autism, sexuality, and relationships is needed and can help autistic adolescents and adults. The group discussions revealed that more research is needed on how to support well-being relating to romantic relationships and sexuality in autistic people and how the people around them can contribute to this. Therefore, we also need to learn more about how autistic people of all ages and throughout their lives experience sexuality and relationships. Finally, the need for attention to the role of stereotypical ideas and stigma about autism, sexuality, and relationships was pointed out. Attention to the experiences of autistic people can help professionals, researchers, and policy makers to offer and organize attuned support and do relevant research. Autism Res 2020, 13: 1248-1257. © 2020 The Authors. Autism Research published by International Society for Autism Research published by Wiley Periodicals LLC.

Family Sexuality Communication for Adolescent Girls on the Autism Spectrum.

Families are critical for supporting healthy sexuality and relationship development for youth with autism. The objective of this study was to describe family sexuality communication for adolescent girls with autism. Participants were 141 parents of autistic daughters who completed an online survey about sexuality development. Most parents relied on discussion alone rather than visual supports or skills-based teaching techniques. Intellectual functioning, child age, race/ethnicity, and whether youth expressed sexual interest in others affected family sexuality communication. We discuss how most parents covered important basics, but many did not cover more nuanced relationship or sexual health topics during family sexuality communication. Few used enhanced instructional techniques (e.g., visual supports, social stories), suggesting potential utilization barriers such as a lack of affordable and available resources. There is a need for research accounting for diverse racial/ethnic backgrounds, sexual orientations including asexuality/demisexuality, and for transgender and gender diverse youth.