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.

Updates to the Autism Intervention Research Network on Physical Health (AIR-P) Research Agenda.

INTRODUCTION: Autistic individuals, now representing one in 36 individuals in the U.S., experience disproportionate physical health challenges relative to non-autistic individuals. The Health Resources and Services Administration's (HRSA) Autism Intervention Research Network on Physical Health (AIR-P) is an interdisciplinary, multi-center Research Network that aims to increase the health, well-being, and quality of life of autistic individuals. The current paper builds on the initial AIR-P Research Agenda (proposed in Year 1) and provides an updated vision for the Network. METHODS: Updates to the Research Agenda were made via the administration of a Qualtrics survey, and disseminated widely to all AIR-P entities, including the Research Node Leaders, Steering Committee, Autistic Researcher Review Board, and collaborating academic and non-academic entities. Network members were tasked with evaluating the Year 1 Research Agenda and proposing additional priorities. RESULTS: Within each Research Node, all Year 1 priorities were endorsed as continued priorities for research on autism and physical health. Specific topics, including co-occurring conditions and self-determination, advocacy, and decision-making, were particularly endorsed. Opportunities for exploratory studies and intervention research were identified across Research Nodes. Qualitative responses providing feedback on additional research priorities were collected. CONCLUSION: The updated AIR-P Research Agenda represents an important step toward enacting large-scale health promotion efforts for autistic individuals across the lifespan. This updated agenda builds on efforts to catalyze autism research in historically underrepresented topic areas while adopting a neurodiversity-oriented approach to health promotion.

Sexual, physical, and emotional aggression, experienced by autistic vs. non-autistic U.S. college students.

ObjectiveTo compare rates of aggression victimization for autistic vs. non-autistic U.S. college students. Participants: n = 1,411 autistic and n = 218,430 non-autistic students from 78 colleges. Methods: We used a three-way interaction term to examine moderation of the relationship between autism and sexual, physical and emotional aggression victimization by depression and sense of belonging. Results: Autistic students were nearly twice as likely as non-autistic students to report past-year emotional victimization (44% vs. 26%, p < 0.001), and more likely to report physical victimization (8.4% vs. 5.7%, p < 0.001). Autistic students who experienced sexual assault were 2.23 times more likely than non-autistic students to report it affected academic performance (80.4% vs. 36.0%, p < 0.001). At both low and high levels of depression, sense of belonging was protective against physical and sexual victimization for autistic students more than for non-autistic students. Conclusions: Institutions of higher education should prioritize preventing and responding to interpersonal aggression against autistic students.

Reasons for alcohol use and non-use by underage U.S. autistic youth: A qualitative study.

LAY ABSTRACT: What is already known about the topic? Hazardous alcohol use is when a person's drinking puts them at increased risk for negative events (e.g. health problems or car crashes). Some studies show that autistic people may be at greater risk for hazardous alcohol use than non-autistic people, while other studies have found that hazardous alcohol use is less common among autistic people than non-autistic people. We need to learn why autistic underage youth choose to drink alcohol or not. The goal of this study was to learn from US autistic youth about their attitudes and behavior related to alcohol. Forty autistic youth aged 16-20 years old were interviewed.What this article adds? Youth described several reasons why they choose to drink alcohol, including feeling like non-autistic people are more accepting when drinking, that it puts them in a less irritable or bored mood, helps them cope with problems, and helps them fit in. Reasons for not drinking alcohol include worries about becoming addicted, medication interactions, not liking the taste, fear of experiencing hangover and other health problems, and concern about acting foolish when drunk.Implications for practice, research, or policy Results reveal that hazardous alcohol use in autistic adults could have its roots in underage experiences that give autistic youth temporary relief from social anxiety, feeling lonely, and challenges with sensory processing. Right now, there are no evidence-based alcohol prevention programs in the United States for autistic people. One or more such programs may be needed. The results from this study could be used to adapt existing programs for non-autistic youth to the unique needs and risk factors of autistic youth.

Reproductive Health and Substance Use Education for Autistic Youth.

BACKGROUND: We provide an update on reproductive health education (RHE) and substance use prevention education (SUPE) participation for autistic youth compared with other youth with and without individualized education plans (IEPs) and 504 plans. The 800 000 autistic youth served by the US special education system need education to make informed decisions about reproductive health and substance use. METHODS: Data were from the National Longitudinal Transition Study-2012, a survey designed to yield nationally representative estimates of the experiences of US youth. Autistic youth (n = 390) who received RHE and SUPE were compared with youth with all other IEP classifications (n = 4420), with a 504 plan (n = 350), and with no IEP or 504 plan (n = 980). All youth were ≥14 years old and able to self-report on a survey. Bivariate and multivariate regression analyses were performed for each group to identify characteristics associated with RHE and SUPE receipt. RESULTS: Autistic youth reported a significantly lower rate of RHE (47.4%) and SUPE (49.6%) inclusion versus students with no IEP or 504 plan (59.2% and 57.4%, respectively). Autistic girls were more than twice as likely to report RHE receipt than autistic boys (55.1% vs 45.9%). For autistic youth, no markers for receipt of SUPE were identified. CONCLUSIONS: Autistic youth are underserved when it comes to school-based RHE and SUPE, potentially undermining self-determination and leading to poorer lifespan health trajectories. Research and policy advocacy are needed to ensure that these youth have access to RHE and SUPE.

Healthy Relationships on the Autism Spectrum (HEARTS): A feasibility test of an online class co-designed and co-taught with autistic people.

LAY ABSTRACT: The Healthy Relationships on the Autism Spectrum class is unique because autistic people helped to develop it and co-taught it. It is an online, six-session class. The class was piloted in 2020-2021 with 55 autistic people who were ages 18-44 years old. This feasibility study found that most people who took the class liked it. Surveys filled out by the students before and after the class showed that they became less sensitive to rejection, used more positive thinking skills, and were more interested in being social. However, the class may not have made them feel less lonely. The team that invented the class is using the feedback to improve it. The class holds promise for improving the quality of friendships and dating relationships for autistic adults and should be tested further.

Using formative research to develop HEARTS: A curriculum-based healthy relationships promoting intervention for individuals on the autism spectrum.

LAY ABSTRACT: What is already known about the topic? All people can benefit from education about how to have healthy friendships and dating relationships. But specific interventions on relationship skills-like respecting boundaries, identifying warning signs of abuse, or talking about sexual preferences-are too rare, particularly for autistic individuals. The goal of this study was to collect formative data from autistic emerging adults to help create a new, six-session workshop for autistic young adults to support healthy peer relationships. Twenty-five autistic youth aged 16-22 years old were interviewed.What this paper adds? The participants described a need for more and better information about how to support lasting friendships, deal with their anxiety about relationships, and know when friendships or dating relationships were reciprocal and rewarding versus unhealthy.Implications for practice, research, or policy. The results reveal a need for a new and effective intervention that supports healthy relationship skills for autistic people.

Autistic Narratives of Sensory Features, Sexuality, and Relationships.

Background: Research about the experience of sexuality and intimacy for autistic people has largely excluded the potential influences of autistic sensory features, which are highly common. The aim of this study was to explore how autistic sensory features influence autistic people's experiences of sexuality and relationships, including the impact of low and high neurological threshold sensory patterns and regarding specific sensory modalities. Methods: Utilizing a qualitative approach, we explored autistic people's perspectives about the influences of sensory features on their experiences of sexuality and relationships through existing publicly available narratives (5 books and 13 online forums containing messages from 72 unique usernames) and responses to an open-ended survey question (N = 49). We used deductive coding based on Dunn's model of sensory processing, as well as inductive coding to identify additional themes about autistic sensory features and sexuality. Results: Our findings indicated that sexual and relationship experiences were related to both sensory sensitivity and sensation seeking (i.e., low and high threshold sensory patterns) across several sensory modalities, including touch, sight, sound, and smell. Sensory features influenced autistic people's sexual and relationship experiences in both positive and negative ways. Examined narratives revealed adaptations and strategies used by autistic people to enhance or enable engagement in sexual activity as well as implications for their sexual identity. Conclusions: Sensory features and their impact on the sexuality and relationship experiences of autistic people should be considered in clinical practice and educational programming. More research is needed to further understand the impact of autistic sensory features on experiences of sexuality and relationships, and to develop effective strategies to promote safe and satisfying engagement, when desired. Lay summary: Why was this study done?: Autistic people often respond to sensations differently than other people, including being more sensitive to sensations and/or wanting more intense sensations (called "autistic sensory features" in this study). Many aspects of sexuality and relationships involve sensory input. However, we do not know much about how autistic sensory features influence sexuality and relationships for autistic people.What was the purpose of this study?: The purpose of this study was to explore how autistic sensory features influence autistic people's experiences of sexuality and relationships.What did the researchers do?: For this study, we used two different sources of data. The first was existing publicly available things written by autistic people, including books and posts on online forums. The second was answers provided on a survey question asking about autistic sensory features and sexuality. Overall, we looked at things written by over 120 autistic people. We reviewed all the information to explore what kinds of sensory responses (e.g., sensitivities and sensation seeking) and sensory modalities (e.g., touches, sights, sounds, and smells) they wrote about. We also looked more generally to see how autistic people described the ways that autistic sensory features influenced their sexuality and relationship experiences.What were the results of the study?: Our findings show that in the information we accessed, autistic people did write about how sensory features influence their sexual and relationship experiences. Some people who have sensory sensitivities described confusion, distress, and frustration with sexual experiences. Despite wanting to participate, people with sensitivities described negative reactions to many of the sights, sounds, smells, and textures that were involved in dating and sexual activities. Other people indicated that they avoided sexual activity because of their sensory features. However, we also found that some autistic people seek out more intense sensations in their sexual activities, and others that enjoy intimacy that promotes calming and self-regulation. People wrote about strategies they use in response to their autistic sensory features, such as communication with partners and the use of substances to dull sensations.What do these findings add to what was already known?: There has not been much published research on this topic, so this study is a starting place. In books, as well as in online discussion boards, autistic people have been discussing the importance of sensory features to their sexuality and relationships. We accessed that information, and used theory and clinical experience to analyze their writings and help identify what other research is needed.What are potential weaknesses in the study?: We used text already written by autistic people and responses on one survey question for this study. Therefore, we may not have gained a complete understanding of the ways that autistic sensory features influence sexuality and relationship experiences.How will these findings help autistic adults now or in the future?: This study contributes to greater understanding of how autistic traits affect sexuality and relationships for autistic people. That information can be used to develop effective education and resources for autistic people, families, and service providers.

Social Capital and Autism in Young Adulthood: Applying Social Network Methods to Measure the Social Capital of Autistic Young Adults.

Social isolation is a core challenge associated with autism. Interpersonal relationships and the resources and support embedded in the social networks of autistic young adults could impact key adult outcomes, including quality of life, mental health, employment, and independence. However, little research systematically measures the networks of autistic young adults and network impact on key adult outcomes. This article demonstrates how social network analysis can be adapted for the field of autism to measure young adult networks. We provide examples as to how this approach could be implemented to yield key insights into the amount and quality of interpersonal relationships and the types of resources embedded in the networks of autistic young adults. The network protocol was feasibility tested with autistic adults during the posthigh school transition period (n = 17, 19-27 years). The parents of three of the recruited young adults also successfully completed a complementary network survey, allowing for the inclusion of the parent-reported network using duocentric network analysis, never before applied to parent-child networks. The implementation data collected from the study suggest feasibility of egocentric and duocentric approaches, with several important modifications to adapt the measure for the field of autism. The future potential of social network research for understanding autism in adulthood is discussed.

Sexual and Reproductive Health Service Utilization and Sexuality for Teens on the Autism Spectrum.

OBJECTIVES: Health care providers and educators play critical roles in supporting healthy sexuality development for youth with autism spectrum disorder. There is limited information about the sexual behavior of these youth, especially girls, and about their access to sexuality education or health care services. METHODS: This study addressed these gaps by surveying parents of youth with autism aged 12-18 years (N = 298, 52.7% boys) with a range of intellectual functioning. RESULTS: According to parent report, most youth experienced sexual attraction and were interested in relationships, including same-sex attraction or relationships (13.2%). Girls were more likely than boys to have had a romantic relationship and less likely to have experienced school or legal consequences for sexual behavior. Around one-fifth of youth had engaged in a socially inappropriate sexual behavior, whereas 6.4% had a known sexual abuse history and 14.5% were bullied by peers for lack of sexual knowledge. Almost 40% received no sex education in school or in the community, including 60.9% of youth with parent-reported intelligence quotient under 70. Some parents consulted with school personnel (36.4%) or health care providers (55.9%) about sexuality issues, whereas 19.5% reported taking no action aside from talking to their child about sexuality. Utilization models including predisposing, enabling, and needs-related factors were applied to parent consultation with providers and use of school-based sexuality education programming. CONCLUSION: The results suggest unmet needs for sexual and reproductive health services, particularly among youth who are younger, those who have co-occurring intellectual disability, or those who are homeschooled or who attend private, charter, or therapeutic versus public schools.

A Lifespan Approach to Patient-Reported Outcomes and Quality of Life for People on the Autism Spectrum.

Autistic self-advocates, family members, and community organizations have called for greater emphasis on enhancing quality of life (QoL) for people with autism. Doing this is critical to understand how QoL unfolds across the life course and to clarify whether gender affects QoL, health, and functioning for people with autism. The purpose of this study was to curate and test a lifespan QoL measurement tool using freely available and well-constructed National Institutes of Health Parent-Reported Outcomes Measurement Information System (PROMIS). To develop the PROMIS Autism Battery-Lifespan (PAB-L), we identified PROMIS scales relevant for autism, reviewed each item, consulted with a panel of autism experts, and elicited feedback from autistic people and family members. This battery provides a comprehensive portrait of QoL for children ages 5-13 (through parent proxy), teens 14-17 (parent proxy and self-report), and adults 18-65 (self-report) with autism compared to the general population. Participants and parent informants (N = 912) recruited through a children's hospital and nationwide U.S. autism research registry completed the PAB-L online. Results indicate that compared to general population norms, people with autism of all ages (or their proxies) reported less desirable outcomes and lower QoL across all domains. Women and girls experienced greater challenges in some areas compared to men and boys with autism. The PAB-L appears to be a feasible and acceptable method for assessing patient-reported outcomes and QoL for autistic people across the life course. Autism Res 2020, 13: 970-987. © 2020 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: We developed a survey to measure the quality of life of children, teens, and adults with autism using free National Institutes of Health PROMIS questionnaires. People with autism and family members rated the PROMIS Autism Battery-Lifespan as useful and important. Some reported a good quality of life, while many reported that their lives were not going as well as they wanted. Women and girls reported more challenges in some areas of life than men and boys.

Family Sexuality Communication: Parent Report for Autistic Young Adults Versus a Comparison Group.

Families are a critical context for healthy sexuality development. This study characterized family sexuality communication for autistic adults (age 18-30) without intellectual disability (n = 117) versus a neurotypical comparison group (n = 319). Parent-reported number of sexuality topics covered did not significantly differ by gender or autism/comparison group. Parents of autistic adults who covered few or no topics (31%) reported higher religiosity, lower comfort and self-efficacy, and were less likely to say that the adult expressed attraction or desire for relationships. Parents of autistic adults were more likely than comparison parents to perceive their young person as being uninterested or not ready to learn about sexuality topics. These results suggest that families of autistic people require support to convey sexuality-related knowledge and values.