Abstract
Background:
Even though evidence shows that Relationships and Sexuality Education (RSE) positively impacts personal and social development, different environments and social contexts see it delivered in varied ways. Autism research has shown autistic people experience more adverse life experiences than their neurotypical peers, with fewer and lower quality relationships and higher rates of violence and abuse. Despite this, neurodivergent learners, including autistic individuals, often miss out completely on RSE or are only offered it in response to risk or problematic sexual behavior. As a result, people do not experience the full potential of RSE as a developmental support system.
Method:
This scoping review explored the literature on attitudes and approaches to RSE for autistic individuals, focusing on the voices of autistic individuals, parents of autistic children, and allied health professionals (AHPs) supporting them. Researchers searched key health care and education electronic databases for studies undertaken by high-income countries from 1990 to the present date, where non-school RSE targeting autistic individuals was the study focus. The researchers established review parameters and search terms through a coproduction approach between autistic and non-autistic researchers. They undertook data extraction (including mapping to a socioecological framework) and a quality assessment and used a meta-ethnographic analysis to determine qualitative themes. Themes were synthesized with quantitative findings from the same data and mapped to a socioecological framework.
Results:
The review included 34 studies, with the majority reporting on RSE from the perspective of autistic individuals, and a minority of three studies offering the AHP perspectives. Researchers identified four themes as follows: Know Me, See Me, Hear Me, and Let’s Collaborate. Mapping to the socioecological framework revealed a lack of understanding of autism and variable RSE for autistic individuals across the socioecological levels. There was a strong call for a collaborative approach across socioecological levels to deliver RSE, with training for all those responsible for delivering it.
Conclusion:
Lack of understanding of both autism and RSE (generally) across societal levels results in often sporadic reactive interventions for autistic individuals at the expense of RSE’s purpose for proactive developmental support and health promotion. Effective delivery of RSE requires collaborative and person-centered efforts to achieve optimal quality-of-life outcomes for autistic individuals and their parents. Researchers need to further explore societal barriers to effective RSE, and parents and AHPs need support to fulfill their role in contextualized learning.
Community Brief
Why is this an important issue?
Autism research has shown that autistic people experience poorer life experiences than their neurotypical peers. Relationships can be of a lower quality with higher rates of violence and abuse. Comprehensive Relationships and Sexuality Education (RSE) supports human, sexual, and social development. Autistic people can miss out on RSE, where other people are deciding what is most important for them. It is necessary to understand how autistic individuals and the people supporting them experience RSE to determine how this service can be better delivered.
What was the purpose of this study?
This study aimed to discover the attitudes and approaches to RSE for autistic learners. It considered the perspectives of autistic people and those closest to them, being primary carers and allied health professionals. These people share the responsibility to deliver RSE, along with schools. The study tried to understand autistic people’s experiences in different environments in their daily life, at home or out in the community. This was to identify gaps in knowledge and to show what other studies are needed. The end goal is to create a framework that guides the delivery of RSE to autistic individuals.
What did the researchers do?
The researchers searched several databases to find articles on autism, sexuality, and education. These were read to understand what work has been done so far in the field. The researchers then analyzed the articles to find new themes and ideas relating to autism and RSE. They looked at people’s experiences at each level of society—at an individual level, a family level, a community level, and a broader societal level. The research team included autistic and non-autistic researchers.
What were the results of the study?
The results showed that autistic individuals feel their needs for RSE are not being recognized. They feel that society does not understand autism very well and they feel that their needs for relationships and sexual expression are not seen or heard by others. Parents sometimes provide RSE to their autistic children but not always. Schools are not very good at providing RSE. These are all barriers that prevent autistic individuals from receiving RSE. The results also showed there is a low understanding of how RSE can help people achieve a better quality of life and a better understanding of sexuality and relationships.
What do these findings add to what was already known?
These findings help with understanding how autistic learners and their families experience RSE in their daily lives. RSE is supposed to be taught in schools, so most RSE research looks at how well schools deliver RSE to students. Parents and allied health providers are the informal but most important source of RSE for children. The results of this study help us understand their perspective, and the autistic learners’ perspective. This gives a more comprehensive picture of why autistic people do not receive adequate RSE. It is important because it looks at experiences at all levels of society.
What are potential weaknesses in the study?
Research focusing on participants with co-occurring autism and intellectual disability was not included in this study. Research from schools was not included either. This research would be interesting to complete the full picture. Material could be reviewed for additional insights. The study also only focused on developed nations and lacks cultural considerations from other contexts.
How will these findings help autistic adults now or in the future?
These findings show that the purpose and benefits of RSE are not well understood. These findings increase the understanding of how RSE should be delivered to autistic individuals. It shows how lack of RSE disadvantages the personal and social development of autistic individuals. It also denies their human rights to RSE. Further work is needed to hear more about autistic and carer voices to identify the best ways to deliver meaningful RSE to autistic individuals.
Keywords
Background
Autism’s defining characteristics, including differences in communication and social-emotional reciprocity, 1 can create challenges for autistic individuals’ interpersonal connectedness and sexual literacy. 2 While some autistic individuals receive social skills programs and behavior interventions,3,4 educators do not regularly deliver these through childhood, failing to support the normative trajectory toward sexual awareness and romantic interest. Systems and institutions often fail to provide formal support for this inevitable part of human development, which comprises autistic individuals’ healthy personal and social growth. 5 Early years education generally teaches basic safety concepts (protective behaviors), but there is little subsequent support for understanding different types of relationships and social rules, puberty, sexuality, identity, diversity, and intimate relationships. 6 These are the fundamental aspects of Relationships and Sexuality Education (RSE), which have proven to support optimal outcomes for individuals and, consequently, family, community, and social health.7,8 However, there is little research on how RSE should be delivered to autistic learners. 9 Researchers predominantly focus on autistic individuals’ sexual behaviors or orientations, rather than on RSE delivery and its role in holistic psychosocial development. 10
School RSE curricula are based on UNESCO’s rights-based framework for Comprehensive Sexuality Education, 8 which incorporates Relationships, Values, Rights and Culture, Understanding Gender, Violence and Staying Safe, Skills for Health and Well-Being, Human Body and Development, Sexuality and Sexual Behavior, and Sexual and Reproductive Health. It builds emotional awareness, respect for others, confidence and self-esteem, understanding of differences, skills in decision-making and assertiveness, apart from showing positive outcomes for sexual health management and reduced sexual abuse.11,12 As such, RSE contributes to improved mental health outcomes and quality of life.13,14
With these credentials, it makes sense that RSE would be pivotal in helping autistic individuals meet their personal and interpersonal goals, including intimate relationships (for which they express the same interest as their neurotypical peers).15,16 It would also help mitigate experiences of violence and abuse against autistic individuals,6,16 which occur at much higher levels in the autistic population,17,18 including violence within intimate relationships. 19 Despite this, RSE is generally perceived as irrelevant for autistic people, where educators and others make assumptions about educational priorities, and individual ability or interest regarding sex and relationships.20–22 When educators and others do deliver RSE, it usually focuses reactively on risk management and problematic sexual behaviors9,23 or specific events (e.g., onset of puberty). RSE is rarely delivered comprehensively, proactively, or skillfully to those who would most benefit from it.24,25
Sexuality is cognitively, emotionally, physically, and socially intrinsic to humans with implications for a person’s life experiences across their lifespan as they move through different contexts and cultural norms.7,26 Understanding how systemic forces shape how autistic learners receive and experience RSE is necessary due to the expansive interpersonal, social, and ecological nature of human sexuality. This aligns with Bronfenbrenner’s theory, 27 which seeks to understand human development through an individual’s interactions within their varying environments. Schools (as a central environment for young people) lead formal RSE, although research documents primary carers and health professionals as important providers of RSE in real-world contexts.28–30 However, researchers know little about their experiences with RSE, and even less about autistic individuals’ thoughts and experiences regarding RSE. This review aims to understand this gap by exploring these key stakeholders’ attitudes and approaches to RSE, by placing them in a socioecological framework as follows: micro (individual level), meso (family level), exo (community level), and macro (societal level). 25 This review will lay a foundation to understand influential factors and processes occurring across the system that impact the delivery of RSE to autistic young people and their families.
Methods
The researchers used a scoping review methodology 31 to examine the literature on attitudes and approaches to RSE for autistic young people, drawing perspectives from autistic learners, parents of autistic children, and allied health professionals (AHPs) who support these groups. The researchers mapped the findings to Bronfenbrenner’s 25 framework, categorizing autistic individuals at the micro-level, parents or primary carers at the meso-level, AHPs at the exo-level, and broader societal codes and norms at the macro-level. They used the JBI framework for scoping reviews, 31 following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) protocol 32 (see the PRISMA-ScR checklist, Supplementary Data).
Autistic members of the research team, and a community reference group comprising two autistic adults, two parents of autistic children, and two AHPs working with autistic clients coproduced the research design.
The researchers conducted a search of databases in November 2023, including Google Scholar and health care and education databases (PsycINFO, CINAHL, Scopus, and ERIC), and the Google Search engine to identify gray literature. The Population, Intervention, Context, Outcome and Study Characteristics approach 33 was used to define search terms and exclusions: Population was autism (autis* or asperger* or neurodiver* or “development* disabilit*), Intervention was RSE (“respectful relationships” or “sex* education” or “relationship* education” or “protective behaviours” or “protective behaviors” or “psychosexual education” or “sociosexual education”), with subject headings of Sex education, Relationships and Sexuality Education, Respectful Relationships, Protective Behaviours, Sexual Health. Context was socioecological contexts with primary focus populations being Autistic individuals, parents of Autistic young people, and AHPs, including counselors, psychologists, occupational therapists, speech pathologists, behavior support practitioners, and social workers. No predefined outcome was set. The researchers excluded studies if participants had multiple diagnoses where the results did not point to autism specifically. They also excluded studies if participants had a codiagnosis of intellectual disability, due to the wide variance this would introduce to the findings (based on advice by the study reference group). The researchers also excluded studies focusing on schools, as these would require a different analytic lens due to schools’ formal role as providers of RSE. The researchers examined reference lists of retrieved systematic reviews for further studies. The search included peer-reviewed articles and gray literature records from 1990 to 2023 to capture potential shifts in attitudes and approaches to RSE, with advances in the understanding of both autism34,35 and sexuality. 36 The researchers limited the studies to those conducted in high-income countries 37 to ensure general socio-political context parity. Dissertations were included at the doctoral level, where the findings were not identified in a peer-reviewed article. The researchers exported search results from each database and imported them into Covidence 38 for screening and data extraction.
The researchers created a unique data extraction template and a quality assessment template guided by Kmet et. al 39 within Covidence. 38 They discussed three articles that had lower quality assessment ratings due to their age and format. They extracted data that included first author, study date, country of publication, aim, study design/type, outcome measures, findings, and recommendations made. They also noted if study participants had a formal or self-reported autism diagnosis, and what definition or conceptualization of sexuality was used.
The researchers assessed whether the study complied with the autism research principles of Autism CRC, Australia’s national, cooperative research center focused on autism. 40 These principles include whether research included autistic participants, was oriented to the needs and wants of autistic individuals, and was codesigned with autistic individuals or their service providers. Neurodiversity principles were also noted against a framework compiled from key texts,34,41–43 which included identifying neuroaffirming language and positioning neurodivergence as a natural neuro-variance rather than a deficit. 44 The researchers created both measures for this review (see Supplementary Data).
Two independent reviewers oversaw the screening phases and data extraction. The researchers contacted two authors for clarification of their participant population, and discussed questionable items until they reached consensus. The value of contextual richness over a high methodology rating was acknowledged, in keeping with meta-ethnographic approaches. 45 The researchers exported the final data to Excel 46 and EndNote. 47
The researchers achieved trustworthiness of this study through peer debriefing and feedback, maintaining an audit trail of decisions, and ongoing researcher reflexivity. Qualitative research requires ongoing author reflexivity, where the researcher is developing new theoretical insights, 48 thus essential within meta-ethnographic analysis. The first author, as a sexologist and psychotherapist working with autistic clients, applied continual reflexivity to ensure awareness of potential bias from clinical experience and learning. The researchers conceived and conducted this review within a neurodiversity paradigm. 44 It presents findings using identity-first language, which autistic contributors preferred.
Synthesis of results
The researchers analyzed quantitative studies and quantitative elements of mixed-methods studies in Excel using the Knowledge, Attitude, and Practice model, which they expressed as knowledge, experiences, and behaviors.49,50 They imported qualitative studies and qualitative elements of mixed-methods studies to NVivo 51 for meta-ethnographic analysis. 52 While unusual for scoping reviews, 53 a meta-ethnographic analysis allowed for a richer conceptualization of the phenomena in question.45,54 The researchers then synthesized and grouped all results according to their place within Bronfenbrenner’s 25 framework to facilitate observation of each stakeholder group’s experiences and to identify which stakeholder groups are most studied in relation to RSE. These results were also grouped under “attitudes and approaches” to align with the overarching aim of the review, attitudes comprising beliefs and feelings about RSE based on experiences and approaches being related to actions taken around the delivery of RSE (see Table 1: All Studies—Results).
All Studies—Results
ADOS, Autism Diagnostic Observation Schedule; AKQ, Autism Knowledge Questionnaire; AQ-10, Autism Spectrum Quotient-10; ASCFS, Autism Spectrum Conditions Sexuality and Functioning Scale; ASCFS-OSS, Autism Spectrum Conditions Sexuality and Functioning Scale-Online Sexuality Scale; ASD, autism spectrum disorder; CSA, child sexual abuse; DAPAS, Dating Abuse Prevention Attitudes Scale; FLEQ, Family Life Education Questionnaire; HFA, high-functioning autism; HFASD, high-functioning autism spectrum disorder; KSHQ, Knowledge of Sexual Health Questionnaire; KSOGSCS-R, Kinsey Sexual Orientation Grid Sexuality and Functioning Scale-Revised; NT, neurotypical; PKSHQ, Psychosexual Knowledge and Sexual Health Questionnaire; POES, Parent Outcome Expectations Scale; PRE, Parental Romantic Expectations; PSCI, Parental Sexuality Concerns Inventory; PSEI, Parent Sexual Education Inventory; PSES, Parent Sexual Education Scale; RSE, Relationship and Sexuality Education; SAQ, Sexual Attitudes Questionnaire; SBS, Sexual Behavior Scale; SEQ, Sexual Experiences Questionnaire; SEI, Sexual Experiences Inventory; SESV, Sexual Experiences Survey Victimization; SHQ, Sexual Health Questionnaire; SRE, Sexuality and Relationship Education; SRS, Social Responsiveness Scale; SRS-2, Social Responsiveness Scale-2; SSES, Sexual Self-Efficacy Scale; SVTl, Sexual Violence Trauma Inventory; TTI, Tackling Teenage Training; TTI-R, Tackling Teenage Training-Revised; VMBO, Voorbereidend Middelbaar Beroepsonderwijs (Prevocational Secondary Education); WASI-II, Wechsler Abbreviated Scale of Intelligence-II; WHO, the World Health Organization.
Results
The researchers imported a total of 825 studies to Covidence, 38 including 804 from the database search, 15 from the Google Search for gray literature, and six through snowballing. They retained 34 studies for review following the inclusion and exclusion criteria (see Fig. 1: PRISMA-ScR flowchart).
Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA ScR) flowchart.
The final 34 studies comprised primary research published in 15 different academic journals from the fields of autism, sexuality, health care, and disability, three doctoral theses, and one book. They included 11 qualitative, 18 quantitative, and five mixed-methods studies, nine of which were RSE program evaluations. Studies were published between 1995 and 2023, primarily in the United States (k = 24), followed by the Netherlands (k = 4), Australia (k = 2), and Canada (k = 2) (see Table 1).
Studies defined sexuality in various ways, with only three studies providing an established WHO definition,56,60,64 and 19 studies focusing on sexuality as sex and sexual behaviors.
Neurodiversity paradigm and autism research principles
Overall, studies applied a neurodiversity lens (as per the principles described above) although over half of the studies required autistic participants to have a clinical diagnosis (k = 21). Around a third of studies used an autism measurement scale, primarily the Autism Spectrum Quotient (AQ) 88 (k = 12). Around two-thirds of studies used an inclusive autism research methodology (as per the criteria described above) 40 (k = 26), although only three noted involving autistic individuals in the study design, and two noted engaging an autistic reference group.
Socioecological mapping of all studies
The researchers divided the studies into system-level groups as follows: micro (12 studies), micro–meso (nine studies), meso (10 studies), meso–exo (one study), eco (one study), and micro–meso–exo (one study).
Unique participants across studies totaled the following: 1101 autistic individuals aged between 9 and 58 years (majority male, including one all-male study 60 and one all-female study 56 ; 794 parents of autistic children (majority female), and 29 AHPs (majority female). Authors had noted one transgender autistic participant 61 and one nonbinary participant. 57 Several studies had a small percentage of participants who had not specified gender (see Table 1, All Studies—Results).
Quantitative Results
Quantitative studies comprised 94% of autistic participants, 78% of parent participants (excluding some proxy voices unquantified), and 59% of AHPs. The authors had employed 45 unique outcome measures across 18 quantitative studies, a third of which authors created specifically for the study (k = 17). Of these, researchers used 78% of measures once, 20% in two studies, and the Sexual Behavior Scale-Third edition 70 in three.
The researchers grouped the outcome measures according to their assessment of Knowledge (19 measures), Experience (nine measures), or Behaviors (12 measures) (see Supplementary Data: Quantitative Studies’ Outcome Measures).
Of the 15 studies focused on the autistic voice, 10 used self-reports and five used proxy reports from parents.
Knowledge and experiences (attitudes)
Micro-level
Seven survey studies at the micro-level used comparison groups to find that autistic participants received less RSE than their neurotypical peers, and that neurotypical groups had greater sexual knowledge and experiences despite both groups indicating a similar interest in RSE.55–58,65,67,69,72,75 Kohn et al. 67 suggested that there were similar rates of RSE between typical and atypical groups, but less learning in the autistic group due to lower pragmatic language skills. These studies also explored sexual knowledge in relation to sexual well-being, finding that lower levels of RSE among autistic participants indicated lower self-concept and higher sexual victimization when compared with the neurotypical groups. Crehan et al.57,58 drew on the same data set in two studies of 44 autistic adults (18 years+), which showed a desire by all participants for holistic RSE learning across the lifespan.
Micro–meso level
Two studies compared perspectives within parent–child dyads, 59 showing parents underestimated their child’s sexual knowledge, experiences, and victimization.60,61,71
Meso-level
Three studies compared parental attitudes to RSE based on their perception of their child’s autism, finding that parents’ concern for their child and their romantic expectations for their child mediated their preparedness to deliver RSE62,63,70 (see Table 2).
Synthesis of All Findings
Behavior (approaches)
Micro-level
The authors found that autistic participants had a lower engagement in sexual activity than neurotypical peers, 56 although there was no significant difference in the timing of any sexual activity. 57 The authors observed a mismatch between parent and autistic child reports on sexual behavior, with the latter reporting more sexual engagement and less parental communication than parents reported.61,65
Meso-level
All the 12 studies measuring behavioral outcomes found that parents felt ill-equipped to discuss sex and sexuality with their autistic children. Parents provided greater RSE to children with less “severe” autism, and parental efficacy remained low, hampered by fear for their child’s sexual exploitation.60,62–64,66 Parents also underestimated their child’s sexual interest (Dewinter et al., 2015). Crehan et al. (2021) urged for early RSE for everyone observing no significant differences in the timings of sexual behavior between autistic and neurotypical persons, with Kohn et al. 67 and Stokes and Kaur 70 emphasizing the need to include social skills in RSE.
Exo-level
In one of the few studies making systemic observations, Curtiss and Ebata 73 deduced from their study into training professionals that for RSE to be successful, agencies, schools, parents, and autistic individuals themselves must all be involved.
Program evaluations
Eight quantitative and one qualitative study evaluated the effectiveness of seven different RSE programs, with all finding significant positive outcomes for participants, including improvements in psychosexual knowledge and greater comfort communicating about sexual topics.
Micro-level
Three studies provided evidence of the efficacy of Dekker et al.’s Tackling Teenage Training (TTT) program, 59 including Visser et al.’s (2017) randomized controlled trial, in which half the cohort (n = 95) trialed the 6-month intervention and half a wait-list. The researchers collected pre, post, and 12-month follow-up surveys, including a psychosexual knowledge test for adolescents 59 and the Social Responsiveness Scale. 90 The authors found significant differences between groups on the primary cognitive and behavioral outcome measures at posttest (Cohen’s d = 0.40) and follow-up (Cohen’s d = 0.42). While social functioning improved, they observed no measurable decrease in problematic sexual behaviors. Crehan, Yang, et al. 72 and Dekker 59 found similar successes for TTT, also identifying preferred content (e.g., gender identity and online dating) and delivery methods (e.g., group work and role-play). Rothman et al. 76 also confirmed the feasibility of online RSE for autistic learners (aged 15–19 years).
Micro–meso level
Two 3-month studies educated parents and children (9–18 years) simultaneously and the results showed positive gains in parents’ knowledge and confidence to deliver RSE (via pre- and posttest parental surveys).68,89 Stankova and Trajkovski 86 explored the use of social stories 91 in their parent-report qualitative evaluation, finding success in increasing knowledge and positively influencing autistic learners’ sexual behaviors.
Meso–exo level
Two studies explored delivery mechanisms for RSE to parents and AHPs, proving the feasibility of online training, workshops, and peer collaboration in boosting RSE knowledge and confidence.73,74
Qualitative Findings
The meta-ethnographic analysis 45 of 11 qualitative and five mixed-methods studies revealed four themes as follows: Know Me (understanding both autistic identity and sexual identity), See Me (recognizing autistic person’s human needs), Hear Me (listening to what autistic learners need from RSE), and Let’s Collaborate (request for a systemic collaboration for RSE) (see Table 1).
Theme 1: Know Me
Understanding autistic identity emerged as a key consideration in delivering RSE, both for autistic individuals and the neurotypical people around them. Across the studies, a consistent pattern emerged through which misconceptions about autism created barriers at multiple levels—from individual self-perception to systemic service delivery. This fundamental lack of understanding manifested in two interconnected ways as follows: limiting assumptions about what it means to be autistic in the context of relationships and sexuality, and a heightened awareness among autistic individuals of their particular vulnerabilities in intimate and social situations.
Subtheme 1
Being Autistic
Researchers identified a systemic lack of autism understanding across studies, manifesting as deficit-focused prejudgments about autistic persons’ needs and wants regarding relationships and intimacy. This reductive thinking was exemplified by one AHP who stated: “Their sexual needs are very basic and have not been complicated through social pressures and cues” (AHP) (p.40). 73 Such perspectives fundamentally misunderstand the complexity and depth of autistic individuals’ relational desires. In contrast, autistic participants “talked frequently about [wanting] partners that provided acceptance and kindness and worked to understand them” (Author) (p.2610). 80 Researchers observed this absence of “knowing” autism in the perpetuation of “othering” and autism being perceived as problematic: “I worry about the rest of the community. People are afraid of our kids because of autistic behaviors. Our neighbor called the police and reported that there was a child acting weird on the street” (Parent) (p.79). 85 This fear extended to natural developmental processes, with parents receiving discouraging messages about their children’s maturation. A mother in Ballan’s study 77 said:
“Even when he grew hair under his arm, got muscles, instead of rejoicing that he is on track with his development, another mom said to me this must be a nightmare. He would be better not to hit puberty because he might get too aroused and not know what to do with himself.” (p.679)
Knowing the autistic identity was also about autistic participants’ own feelings toward their identity, where they did not perceive their own strengths: “A barrier identified by youth but not caregivers was that of poor self-image/confidence” (p.98). 82 This lack of self-confidence combined with fear and anxiety around relationships and “difficulty understanding one’s sexuality complicated their relationship desires” (p.2609). 80
Subtheme 2
Being sexually vulnerable
Across studies, autistic participants expressed a strong awareness of their vulnerability in social and intimate contexts, which was often coupled with experiences of exploitation or misunderstanding. The challenge of navigating social cues was described by a 55-year-old autistic participant: “I’ve always been baffled by everything, ‘people.’ I get blindsided. Then I think that I don’t pick up on cues that people think are very obvious about being rejected and/or being interested, both, everything” (p.174). 78 Participants also demonstrated a retrospective understanding of vulnerability: “I’ve been in a bad situation, where … I know now that that person probably was using me. But at the time, I was so head over heels for that person that I didn’t really … think anything other than “He really likes me” (Autistic participant) (p.3686). 75 Parents consistently expressed a fear of the consequences for their child when their actions were misunderstood in social contexts. A parent in a study by Eyres 81 reflected, “what would happen if she was not with him and he exposed himself on a public bus saying, “I am terrified of how the police would handle the situation. It makes me fearful for my son’s safety” (p.224). AHPs also discussed their awareness of how autism is often misunderstood, with one noting: “I have had a client in the past get into trouble at college where he was “flirting” with a female though she felt he was a threat”(p.40) 73 and Barnett and Maticka‐Tyndale 78 finding “… pathologising of “some of the “unusual” sexual behaviors … [that] may be adaptive responses to sensory experiences” (p.177).
Theme 2: See Me
Across the reviewed studies, a pattern emerged by which the legitimate development and human needs of autistic individuals were regularly ignored in the context of RSE. This invisibility operated across systemic levels as a barrier to the provision of RSE, surfacing in the following two subthemes: Inadequate delivery and Societal attitudes as barriers.
Subtheme 1
Inadequate delivery
All stakeholder groups reached a consensus that the RSE delivered to autistic young people does not meet their needs. This inadequacy related to content gaps, relevance, and accessibility. Autistic participants reported that school-based RSE focused disproportionately on fear-based messages while ignoring the relational aspects of intimacy: “I felt as though I was being told that sex was extremely dangerous, and I could contract hellish diseases if I wasn’t careful” and “School talked about the mechanics of sex, but none of the moral or social conventions around sex” (p.175). 78 Educators failed to deliver a nuanced approach concerning the social and safety aspects of RSE that participants most needed to understand: “I only learned about the obvious indicators of sexual assault (physical force, rape, etc.) and not the subtle indicators (grooming techniques)” (Autistic participant) (p.175). 78 Autistic participants also experienced parental approaches as inadequate, reflecting parents’ own discomfort and uncertainty, and illustrated by a 17-year old talking of “[Mom] trying to get [him to go out] with a girl,” but Dad was “too embarrassed” (p.2611). 80 Parents cited limited time and having other priorities as reasons for not delivering RSE, 77 and AHPs identified parental attitudes to sexuality and RSE as a barrier to effective education. 73 Researchers observed that schools lacked the ability to deliver adequate RSE, 10 a problematic institutional barrier observed across studies that emphasized the importance of collaboration: “If the school and the parents can’t work together, it’s done” (Parent) (p.110). 82
Subtheme 2
Societal attitudes as barriers
The studies revealed pervasive systemic attitudes that create barriers to meaningful RSE, at an interpersonal and institutional level. Parents encountered judgment and discomfort around sexuality as it pertained to their autistic child, resulting in a lack of support: “You feel like you can’t talk about it because people are going to automatically be like ‘wow’ my kid doesn’t do that … Your kid’s weird” (Parent) (p.613) 84 and Nichols and Blakeley-Smith: “the public is sometimes fearful of their child, and that their behaviors are misunderstood or misinterpreted” (p.79). 85 Professionals sometimes reflected this attitude in their responses, with service providers demonstrating embarrassment or dismissiveness around autistic sexuality: “I talked to the school nurse, who was no help. She was embarrassed that a kid with a disability was doing this and told us to speak with his psychiatrist or behavior person, basically anyone who dealt with problem behaviors for autism kids” (Parent) (p.679). 77 The system hindered other AHPs from delivering comprehensive RSE, highlighting schools’ reductive approach: “There’s very limited opportunity to … do more of the life skill preparation or relationship type preparation, because it’s the school setting and education is the emphasis” (AHP) (p.30). 79 Some researchers queried the deeper assumptions around autism, wondering if “educators do not entirely believe that individuals with ASD are capable of such a [transformative learning] experience” (p.44). 73
Theme 3: Hear Me
A critical gap emerged from this review regarding the consultation of autistic participants for their RSE needs, contributing to the inadequate content and delivery identified in other themes. Subthemes emerged around a need for comprehensive RSE (“the whole picture”) and for suitable delivery mechanisms.
Subtheme 1
Seeking the whole picture
Autistic participants expressed specific needs from RSE that went beyond basic biology and safety education. Their requests demonstrated a desire for holistic RSE, rather than the redacted version they received: “For me, sexuality education … I have to … understand what the human body is for me, and … why people have pleasure” (Autistic participant) (p.124). 82 Participants highlighted certain topics as necessary: “… the subject of intersex is a fascinating topic, as well as how society and families handle it” (Autistic participant) (p. 2116). 58 Autistic participants stressed a desire for social learning and socio-sexual rules, 82 including “… recognizing good and bad in relationships in general” (Autistic participant) (p.2611). 80 Parents also sought holistic RSE, with an emphasis on safety and inclusion, for example, seeing: “hygiene as a means to foster children’s self-awareness and socialization” and “… preparing him for rejection so it doesn’t destroy his self-esteem” (Parent) (p.681). 77 Bolstering their child’s self-awareness was a part of this also, one parent saying: “I want my daughter to learn to respect her body and teach partners to respect her. She needs to learn how to not be taken advantage of in relationships” (p.79). 85 The need to address online information was raised by parents concerned with the influence of video games in modeling misogynistic relationships, 82 while AHPs reinforced the need for contextualized learning, for example, that biological information is understood within the frame of social relationships. 79
Subtheme 2
Are approaches suitable?
Beyond content concerns, autistic participants and their parents questioned how effectively educational approaches were adapted to accommodate autistic learning styles. Several studies found the conventional school setting to be unhelpful: “… delivery methods were noted to be inadequate (e.g., unengaging school worksheets) and a misfit with needs or developmental level”, (p.615) 84 and “… if I’m working with just a circle of friends it works well. But, if it’s too many people … being loud and rambunctious it sort of stresses me and gets me off track …” (Autistic participant) (p.110). 82 The authors observed the need to consider autistic communication styles and sensory profiles, suggesting literal declaration and awareness of the sensory aspects of topics and how resources are presented. Parents also noted the need to respect individual identity, with one stating “their child was particularly resistant to resources that were labeled as ‘disability’ specific, which caused issues when attempting to access accessible [RSE] and support information (p.247). 83 Parents also acknowledged their own limitations in this regard, raising concern around their “Lack of practical knowledge or explicit direction on how to adapt information and resources for their child or young person’s specific learning needs” (p.248). 74 They felt “at a loss” for the best way to deliver RSE (Parent) (p.613). 84
Theme 4: Let’s Collaborate
The review revealed a strong consensus for a systemically collaborative effort to RSE for autistic learners. This theme recognized that no single party could fully meet the extent and nature of RSE. A collaborative effort was called to achieve multiple sources of support and expertise across contexts, to benefit all participants.
Subtheme 1
Yes, but not alone
All stakeholders expressed a desire for a team approach that recognized RSE as a shared responsibility.81–83 This reflected a desire by autistic learners to have options around educators, and by parents to have peer support as well as expert guidance. Parents clearly embrace their role as RSE providers, and find interaction with like-minded peers invaluable: “Teachers and therapists know a lot, but they don’t share information about sex or birth control … it’s even nicer to talk to moms that have gone through it already” (Parent) (p.680). 77 Donnelly et al. found that “Many parents and carers require continued support in the practical implementation of support strategies beyond a one-off workshop” (p.248). 74 Autistic learners determined that different educators would suit different topics or contexts, reasoning “… parents should be a back-up in case somebody like me misunderstands it and needs more of an explanation” (p.101) and “Teacher or dad … I’m not sure which one will be the best source. I don’t know if my teacher is good enough” (p.103). 82
Subtheme 2
We need expertise
All stakeholders consistently called for specialist expertise and training for RSE providers across the system. Parents expressed frustration at gaps in professional capability to support their autistic child’s sexuality, especially concerning safety: “The experts have an answer for every situation with my child except the one that could land him in jail if he handles it wrong. I just wish they would be trained to ask us the important questions since we don’t know what questions to ask or to who” (Parent) (p.680), 77 and “[needs to be] training for other people to be more understanding, sensitive and appropriate regarding our children’s needs” (Parent) (p.80). 85 Parents emphasized the value of skilled AHPs from their positive experiences, for example: “Dr. Margaret will not let me retreat to my natural tendency to just avoid the fact that puberty will happen. She will make sure we have a plan and prepare for the changes” (Parent) (p.22) 81 (see Table 2: Synthesis of All Studies mapped to the socioecological framework).
The researchers shared the summary results with the study reference group, the members of which concurred with the findings. An AHP said: “I found the comments about experts not providing strategies to avoid the justice system salient”, and “The lack of RSE resources appropriate for people with ASD … resonated with me.” An autistic member said: “Pretty much all of it are things I expected to see, all are very well-done and topics that autistic folks have been discussing for a long time.” Some group members expressed surprise that autistic autonomy was not more prevalent: “Autistic folks know themselves best and are largely encouraged by neurotypical society to mask and conform to fit-in to neurotypical sexual standards.”
Discussion
This review explored attitudes and approaches to delivering RSE to Autistic individuals from key stakeholders’ perspectives. A synthesis of quantitative and qualitative analyses revealed a disconnect between desired, required, and actual RSE provision, characterized by the following four key themes: Know Me, See Me, Hear Me, and Let’s Collaborate. The key themes illustrate an autistic mis/nonrecognition 92 within RSE delivery across the system, where autistic individuals’ and primary carers’ needs are not being honored to a detrimental effect. Autistic participants and parents feel they are misunderstood or not recognized in relation to RSE, with their human rights and needs redacted in response to their autism.
Systematic diminishment of RSE
This review found RSE to be systematically diminished from its intended role as a comprehensive development support program. Rather than purposefully delivering proactive holistic RSE, current approaches focus on immediate needs and risk prevention. This reactive approach denies autistic individuals the opportunity to build an integrated sense of self necessary for self-management, social awareness, relationship skills, and responsible decision-making.8,93 The findings here reveal a concerning narrative of poor self-concept and sexual vulnerability,55,56,65,69,75 highlighting inadequate RSE’s detrimental impact. There is a strong indication here that establishing a healthy autistic identity as a precursor to a healthy sexual identity may generate greater sexual confidence and sexual security, a finding supported by a study by Pearson et al. 18 of autistic adults making sense of their victimization due to their autistic identity. Furthermore, sexual well-being and self-esteem are key protective factors against abuse,55,65,67,75 a critical consideration, with abuse against autistic individuals being considerably higher than against their neurotypical peers.94,95 However, in a socioecological model, environmental and intersectional norms, beliefs, and expectations shape personal identity, including both autistic and sexual identities.27,96–99 That system’s mis/nonrecognition of autism, therefore, influences autistic individuals’ identity formation. 92 Digital culture further complicates this social landscape, including accessible sexual imagery and gendered gaming100–102 that distort relationships and sexual norms that autistic consumers may not recognize as inauthentic.28,103 This sex and gender melee in the real and online worlds combines with a historical ambiguity around sexuality in research104,105 to undermine sexuality as a nuanced quintessence of individual identity.
Stakeholder perspectives and needs
Know Me: Understanding individual needs
Autistic participants expressed a desire for “the whole picture,” including greater information on real-world application and contextual nuance to meet their social goals for friendships and romantic relationships, including understanding consent and assertiveness while exploring gender and sexual identity.57,58,61,68,75,80 In effect, they seek to learn all that comprehensive RSE offers, not just how to stay safe against abuse, which is the common distillation of RSE for autistic learners. However, parents were found to take a reactionary approach to teaching their children RSE, typically responding to immediate needs and risks (e.g., problematic behavior). They often made arbitrary decisions about what RSE to provide, mediated by their own level of concern and romantic expectations for their child.70,85 Parents consistently underestimate their child’s sexual knowledge, experiences, and victimization,60,61,89 which may indicate the occurrence of more social learning than parents are aware of.
See Me: Recognition and visibility.
Autistic individuals, parents, and AHP all reported that current systems render them invisible, and do their best without RSE leadership, specific training, or expert support. All stakeholders agreed that schools failed to deliver adequate RSE or consider unique autistic factors such as masking, sensory sensitivities, low interoceptive awareness, or autistic attitudes and expectations of sexual intimacy.106–108
Hear Me: Valuing voices.
Researchers have conducted limited studies with autistic participants, parents of autistic children, and AHPs in relation to RSE. Parent and autistic voices are often dismissed, and while AHPs often have an influential role in autistic communities, their thoughts regarding RSE delivery are rarely sought (represented by only three articles in this review).73,79,87 These studies showed that AHPs feel constrained to deliver adequate RSE due to systemic barriers, including prevailing culture, organizational policies, parental beliefs, and their own lack of training.
Let’s Collaborate: Working together.
All stakeholder groups called for a systemically collaborative approach to RSE delivery. Parents seek support from empathic peers and proactive guidance from schools and health providers.58,73,74,76 AHPs also seek expertise and institutional leadership. It is clear that all providers, informal and formal, must build their capacity to deliver RSE, and the nine RSE program evaluations in this review show the feasibility of training to enable this. Programs improved knowledge, comfort levels, relationship quality, and child recipients’ sexual behavior. They demonstrated the criticality of understanding the learning preferences of autistic participants.76,82,86 This sits well with evidence supporting the efficacy of broader parent-focused interventions for autism families.109,110
Systemic considerations
This review revealed pervasive societal misconceptions about both autism and RSE that significantly impact RSE delivery. The prevailing mis/nonrecognition of autism, including the othering and judgment seen in broader autism research also, 111 is particularly troublesome where it interacts with RSE, the very tool that can help dismantle stigma and increase the quality of life and inclusion. The two phenomena collide in a wholly inadequate way in a diminishment of both.
The findings overall reinforce the need for a person-centered approach to RSE for autistic learners and their supports. Person-centered approaches are foundational to contemporary health and social care, yet this review reveals that systems do not incorporate them in relation to RSE. Person-centered thinking requires an empathic understanding of an individual’s lived experiences in different contexts, enabling meaningful collaboration in service design and delivery.112,113 While AHPs working with autistic individuals and their families may engage person-centered principles, they are hindered by systemic challenges and lack of training in RSE; parents have their child’s best interests at heart yet may be guided by their own concerns and comfort levels. This review suggests that attention must be paid to the ongoing and changing interactions autistic individuals experience within different contexts. These proximal processes 114 illuminate tensions and inconsistencies that create barriers to RSE access and delivery. Research has already shown that individualized approaches with a person-centered and strengths-based core lead to optimal outcomes for autism interventions 115 and suit the nuanced aspects of RSE.
Reynolds 116 places individuals’ sense of self and self-determination at the foundation of their “hierarchy of sexual health learning needs,” followed by a sense of respect for others, friendships and social contacts, and physiological knowledge, and only then, intimate or sexual relationships. This approach supports this review’s findings that understanding autistic identity is a prerequisite for a healthy sexual identity and meets the staged concept of RSE. RSE may be usefully framed within a quality-of-life model, such as Nussbaum’s Capabilities Framework. 117 Nussbaum’s framework encourages consideration of individual and systemic contextual factors as a pathway to equitable and quality life experiences, which would help illustrate how comprehensive RSE for autistic learners contributes to personal autonomy, social integration, and overall well-being. Pellicano et al.’s 118 translation of the general autistic experience to this framework indicates its viability in supporting the RSE framework 8 across each dimension. A quality-of-life framework may afford a clear route to address the key findings of this review: a systemic autistic mis/nonrecognition, a diminishment of RSE to arbitrarily delivered elements, and a call for collaborative person-centered RSE delivery with clear leadership.
Limitations
This review considered socioculturally similar contexts, which limits the generalizability of findings across different cultural settings. It excluded studies that involved autistic participants with intellectual disabilities, which may imply that there is less research in this space than does exist more broadly. The works of Pedgrift and Sparapani 16 and Torralbas-Ortega et al., 119 for example, did not meet the inclusion criteria but are invaluable for the ongoing study of which this review is the initial step. This review highlights that AHP voices are underrepresented regarding RSE, much as they are in broader autism research, 120 and it did not acquire an objective macro-level understanding of policy and attitudes to RSE and autism, which would be highly valuable.
Future directions
The use of Bronfenbrenner’s ecological framework 27 highlights areas for further research, including macro-level policy for an improved understanding of systemic barriers and facilitators for RSE, and the exploration of framing RSE to a quality-of-life framework. Greater attention to key stakeholder voices is required, and leaning further into Bronfenbrenner’s systems theory via his Process-Person-Context-Time model 114 to better understand autistic individuals’ developmental and RSE needs. Continuing to build an understanding of neurodiversity and autism within neurotypical populations and public services is critical, in tandem with multilevel training in person-centered RSE delivery to meet autistic needs. This requires a shift from formal/informal providers of RSE to an intentionally collaborative model, building capacity across the system while lifting the veil of shame over sexuality.
Greater empirical evidence for RSE programs is required, 6 including the role of sexualized digital content as unauthorized sexuality education. While the strengths of online engagement were noted here, with technology seen as advantageous to social belonging and learning, 84 other studies show that pornography serves as an unreliable sex educator for some, challenging key concepts such as respect and consent (Figs. 1–2).101,103,121
Future directions.
Conclusion
This review is unusual in seeking and synthesizing the voice of autistic learners, parents of autistic children, and AHPs in the delivery and receipt of RSE, and by aiming to understand the contextual factors and foci at play regarding RSE for autistic learners. This review of 34 studies found that systems are hindering the personal and social development of autistic individuals through an arbitrarily delivered and poorly understood RSE in the context of autistic mis/nonrecognition. It suggests that ignorance and fear at all levels of the socioecological system render RSE discretionary, problem-focused, and restricted despite available tools and programs. The system must establish clear leadership to assert holistic RSE through collaborative and person-centered approaches, including autism and sexuality training for all RSE providers. The systemic reduction of RSE to some of its component parts results in a highly underperforming RSE for autistic individuals and their families, in defiance of global evidence and human rights. The pivotal role of parents and AHPs in delivering RSE in a real-world context is emphasized, and stakeholders must assert RSE as a holistic program to support individual growth and quality of life.
Footnotes
Acknowledgments
The authors thank the members of the consumer steering group for their time and involvement.
Author Disclosure Statement
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding Information
This study was funded by the Australian Government through Curtin University, Western Australia.
Authorship Confirmation Statement
All authors contributed to the study conception and design. M.S. collected data and analyzed them. The article was written by M.S. with guidance from all the authors, and all authors read and approved the final article. This article has been given solely to this journal and is not published, in press, or submitted elsewhere.
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