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Theorizing the Role of Sex Educators in the Resistance and Reification of Epistemic Injustices Related to the Sexual Expression of People with Intellectual Disability

Curtiss, S. L., & Stoffers, M. (2025). Theorizing the role of sex educators in the resistance and reification of epistemic injustices related to the sexual expression of people with intellectual disability. Archives of Sexual Behavior, 54(2), 605-621. https://link.springer.com/content/pdf/10.1007/s10508-024-03039-5.pdf

  • Introduction Sex Education and Intellectual Disability
  • Sex Education Comprehensive sex education includes medically accurate instruction addressing contraception, abstinence, human development, relationships, decision-making and dis- ease prevention (Future of Sex Education Initiative, 2012), and address cognitive, affective, and behavioral learning domains (Sexuality Information Education Council of the United States; SIECUS, 2004). Comprehensive sex education has been proven to support the development of sex positivity, healthy relationships, and the ability to make informed choices, as well as been associated with delayed intercourse, increased contraceptive use, fewer sexual partners, and reduction in homophobia.
  • Intellectual Disability Intellectual Disability (ID): A permanent disability that is present during childhood, and is medically diagnosed through cognitive and adaptive functioning assessments. People with ID often need specialized instruction to learn academic and life skills and some people will always need significant support in these areas. People with intellectual disability have been found to have less knowledge about sex and sexuality than their non-disabled peers.
  • Intellectual Disability & Sex Education individuals with intellectual disability have reported receiving limited sex education information: in the USA, students who have individualized education plans under intellectual disability and autism designations are the least likely to receive sex education of any students (Holmes et al., 2022). On top of already being significantly more at risk for sexual assault already, This lack of access to comprehensive sex education can further increase the risk of experiencing sexual assault for people with ID. When sexual education is provided, it is less likely to be comprehensive and is gendered and heteronormative. Although historically desexualized by society, individuals with ID are a diverse group with varied sexual identities.
  • Introduction Epistemic Injustice, Sexual Knowledge, and Disability
  • Epistemic Injustice Epistemic Injustice: systems of knowledge and educational inequality in the form of hermeneutics and testimony (Fricker, 2007) and provides an important framework through which to explore the unique intersection of power and understanding that applies to sex education and people with intellectual disability. This leads to exclusionary practices, such as preventing individuals from marginalized populations to serve in authoritative positions, restricting expression to those deemed legitimate by the socially privileged population, or assigning a social expectation to an individual that may not align with the individual’s personal interests or needs (Fricker, 2007; Kidd & Carel, 2018).
  • Hermeneutical Injustice Hermeneutical injustice results when a marginalized individual’s or group’s social experiences are not reflected within or understood by the broader majority population (Fricker, 2007; Kidd & Carel, 2018). For marginalized groups, a lack of these hermeneutical resources may prevent access to knowledge and communication of knowledge to those in more socially privileged groups (McKinnon, 2016).
  • Testimonial Injustice The other dimension of epistemic injustice is testimonial injustice: when those in a privileged societal group give less credibility to those in the marginalized group, thus those in the marginalized group are relegated as less able to know. These expectations, therefore, lead to restrictions on sexual expression that mandate that individuals with intellectual disability model behaviors that would not be expected by those without disabilities—such as no engagement in sexual activity (de Wit et al., 2022).
  • Disability and Media Media representation of the sexuality of individuals with intellectual and developmental disability shows the integration of both dimensions of epistemic injustice through the reinforcement of persistent stereotypes and myths regarding disability and sexuality. Stereotypes such as people with autism being cold and unfeeling demonstrate the lack of understanding of the disability experience from people without disability, and leads to those with disabilities unable to see accurate depictions of their experiences, leading of a lack of understanding for all.
  • Current Study
  • Current Study Those who teach sex education to individuals with intellectual disability are in a unique position to resist or reify epistemic injustices related to disability and sexuality. In the process of educating, they are utilizing hermeneutical rules of how credibility is established that can lend credibility to the learner.
  • Current Study Given this complex landscape of sexuality and disability, it is imperative to understand how sex educators approach provision of sex education when supporting individuals with intellectual disability. Thus, the current study seeks to examine the experiences of sex educators of individuals with intellectual disability to understand how educators may perpetuate or resist epistemic injustices that individuals with such disabilities face in the context of sexuality and sex education.
  • Restriction of and Hostility Toward Sex Education and Sexual Expression Restriction of Sexual Expression Reifying Sexual Stigmas Allied in Support of Autonomy Prosocial Sexual Expression Fear of sexual abuse and perpetration, conscription to asexuality, paternalistic service system, complex ethical dilemmas Person-centered Values Expertise, Access to curricular resources, Self advocates as teachers and partners, subversiveness, de-problematizing Normative Sexual Behavior Centralizing capacity to consent Desexualizing Sex Education Emphasizing risk Acknowledging gender identity Figure 1: Grounded theory of how sex educators who teach those with intellectual and developmental disabilities utilize sex education to enable prosocial sexual expression or facilitatre the restriction of it
  • Methods
  • Participants We purposefully recruited adults (over the age of 18) who professionally teach sex education to individuals with intellectual disability in the USA through internet searches, professional networks, and snowball sampling. This yielded 58 sex educators. We used the concept of theoretical sampling to guide participant recruitment, which means we recruited with the goal of finding diversity in the experiences of the sex educators so that we can use these diverse experiences to maximize opportunities to develop concepts.
  • Procedure We emailed potential participants to let them know of our study, and if they were interested and eligible, they scheduled a time to be interviewed and received an electronic copy of the consent form. Once recorded, the interviews, which lasted approximately one hour, were professionally transcribed. Analysis began with the completion of the first interview and lasted until the completion of this manuscript. Analysis was primarily conducted by the authors with some assistance from undergraduate research assistants with whom we met weekly. Interviews The interview covered topics such as the educator’s background, the resources they utilized, their instructional methods, content-specific instruction (e.g., consent), challenges and facilitators of providing sex education, and educators’ personal values. The purpose of the interview was to elicit their stories, thoughts, opinions, and conceptualizations (Charmaz & Thornberg, 2012). The interview is a shared space of meaning making in which the participant must interpret their own ideas that we, in turn, interpret again.
  • Analysis The analytical tools we used to move raw data through our concepts of theory were asking questions, making comparisons, coding (deriving concepts from the data and articulating their properties and boundaries), exploring concepts through a conditional matrix, memoing (growing in understanding through writing), and diagramming (showing visual representations that show relationships between concepts.
  • Results The findings of our grounded theory analysis explicate how those to teach sex education to people with intellectual disability both support prosocial sexual expression and perpetuate the restriction of sexual expression. Thus in our theoretical model, these are the outcomes. Centralizing capacity to consent Emphasizing Risk Desexualizing (through) Sex Education Acknowledging gender identity
  • Restriction of and Hostility Toward Sexual Expression
  • Hostility Towards Sexual Expression Hostility toward the sexual expression of people with intellectual disability ranged from creating policies that restrict sexual expression such as having unattainable standards for consent to encouraging fear of sexual contact through and emphasis on risk. Other examples include desexualizing through ignoring feelings of intimacy and not acknowledging gender identity.
  • Centralizing Capacity to Consent For people without intellectual disability, there are very limited instances of when the capacity to consent was called into question, but for people with ID, it is applied much more generally. While some educators who value person centered education prioritized education on consent because they saw it as foundational to the autonomy of their own students, other educators attempt to use consent as a barrier to sexual expression by classifying students at varying teirs of their ability to consent. This practice is harmful, as it assumes that students are unable to grow in their knowledge on the subject, and restricts them from the very education they need to learn about it.
  • Centralizing Capacity to Consent Seth, a school-based educator with three years of experience, expressed the importance of individualization of instruction and supporting sexual expression: “With some creativity there are a lot of different ways that people can communicate consent and be sexual with each other. We support people with disabilities in many ways, like eating and going to the bathroom and going to work and living independently and all these different things. And then when it’s time for sex, it’s like they either have to do it all by themselves, conceptually and perfectly, even though non-disabled people are not like that, or it just can’t happen.” Seth acknowledged the need to defy current norms related to the care of individuals with disabilities, as well as be thoughtful and student-focused in his instruction.
  • On the other hand, Ashleigh, a BCBA with 11 years of experience, described a new system her agency was preparing to implement to decide an individual’s sex education program: Centralizing Capacity to Consent “Each client will have to be assessed for the ability to give consent, and then from there… we have three different curriculums that we’re going to be using across the agency… There will be a curriculum for each group that would be more appropriate to maybe some of the guys. It’s pretty sophisticated stuff that we need to deal with, but maybe some of the other people are like, they just need to know body parts.” This system assumes the people with ID are stagnant in their knowledge, and if deemed unable to consent, they are never given the tools and education needed to understand consent.
  • Emphasizing Risk SImilar to consent instruction, the fear of sexual abuse and sexual perpetration sometimes led to education content that emphasized risk and did not fully recognize individuals with intellectual disability as sexual beings. These fears could arise from the educator, the family, or service delivery system, and often led to people with intellectual disability being conscripted to asexuality. Notably, some individuals with disabilities are asexual, but conscription of asexuality refers to desexing, or removing someones sexual characteristics.
  • Emphasizing Risk Taylor, a public health-based educator with two years of experience explains the issue: Our state coalition against sexual assault developed a curriculum that’s supposed to be for folks with [intellectual disability]. I had particular issues with it…It definitely wasn’t coming from a person-centered space of recognizing that all folks have wants and needs and desires and we should be respecting those. It very much came from a little patronizing space. And also it felt very limiting in recognizing the full sexual nature of people. I think it was so focused on, like, if a caregiver is abusing you, here are things that you can do instead of also focusing on like, here is how you practice healthy relationships in your life and assert your boundaries.
  • Importantly, self-advocates as teachers and partners recognized instruction emphasizing risk and vulnerability could lead to limitations on information that reduces risk. Brittany, a university-based educator with 12 years of experience who also identified as a self-advocate, suggested that intentions to protect individuals with disabilities often created greater risk: Emphasizing Risk “Basically, trying to protect people does not keep them safe. It makes them at a higher risk. Some people like to use the V word. Do you know what the V word is? Vulnerable. They like saying people with disabilities are vulnerable. I don’t like that word. The only reason we’re more vulnerable is because people don’t give us the information. In my work, I don’t use the word vulnerable.”
  • Desexualizing (Through) Sex Education Like emphasizing risk, desexualizing sex education was another strategy that educators used to provide sex education, given the hostile environment toward sex education and the paternalistic service system. For example, Natalie, a small business-based educator with twenty years of experience said: “And so here’s a group of people that didn’t have any kind of sexuality education. They’re now working in a work site and never had any education around what’s okay to do in the work site around relationships and sexuality. So we took the sexuality education curriculum and cut it down to really focusing on healthy work relationships.” In this excerpt, Natalie explains how she had to edit her curriculum to exclude sex and focus on healthy relationships to be able to teach “sex” education.
  • Natalie links desexualizing sex education to desexualizing through sex education as she was brought in to provide instruction only when a person had inappropriate sexual behavior, as shown in this statement: Desexualizing (Through) Sex Education “And the reason [the employment program] reached out to me is that many people were losing their jobs. Not because they couldn’t do the actual job, but because they were asking coworkers out or hugging someone they weren’t supposed [to], those sorts of healthy work boundaries.” Natalie was asked to teach “sex” education for the specific purpose of using education to teach “healthy” sexual boundaries, such that there were no realistic avenues for sexual expression—conscripting the person to asexuality.
  • Natalie illustrates the two sides of Desexualizing (Through) Sex Education: (1) when sex education lacks instruction on physical intimacy and (2) when sex education is used to address problematic sexual behavior. Regarding the lack of instruction on physical intimacy, some educators intentionally desexualized their instruction as an act of subversion in order to improve access to some level of sex education. Morgan, a disability program-based educator with six years of experience, says: “Usually, the way that we try to work it is, we say, “Well, can they stay for these topics?” They’re like, “Yeah, healthy communication is fine. Healthy decision-making is fine, but I don’t want them to do types of sex.” So, those different negotiations, so that we can at least have the students in some of the topics.” Desexualizing (Through) Sex Education In this example, Morgan has a preset curriculum, and she negotiates with parents to allow students to attend at least some sessions. Though well intentioned, this still reify’s sexual stigma by validating that sexual knowledge is unnecessary.
  • Acknowledging Gender Identity We directly asked educators what areas they saw as being gaps in the education they provided and gender identity was a common response. We also asked some educators how they would teach gender identity or gender expression, and several said they did not teach gender identity, or, like Mabel, struggled to teach it: “I’ve only done one lesson, and I only had three participants in it. It wasn’t the most successful course that I ran. I think some of the information, just given the three clients I had in that particular session, seemed to be a really hard topic for them to grasp. And I think it’s because it was the first time they were hearing any of the information. And I mean, even for me, I’ve heard it, a dozen to a 100 times, and there’s still areas where I’m like, ‘Am I using the right pronoun?’“ The implication was that after the initial poor response, she chose not to teach gender identity again, thereby restricting students’ access to instruction supporting sexual expression.
  • Acknowledging Gender Identity Several educators discussed how discussions of gender identity were embedded within their curricula, for example, Bailey, a public health-based educator with five years of experience said, So, we actually have a whole presentation on identities. We talk about biological sex or what we call “sometimes body parts,” and then we talk about gender identity, we talk about gender expression, and we talk about sexual orientation…we often ask students how they express themselves and reminding students that it’s really important to be really respectful to the way that other people express themselves. We can assume someone’s gender identity or their sexual orientation by the way that they’re expressing themselves This example illustrates how some educators embed gender identity into instruction and also how doing so is a reflection of the value that all gender identities and sexual orientations should be validated and respected.
  • Acknowledging Gender Identity The discrepency between interpreting gender identity as a topic that should be universally taught or taught only if it “came up” seemed to depend on the educators expertise, partnership with people with disabilities, access to curricular resources, as well as the educators interpretation of valuing person-centered education. teaching this topic only if students are wanting or needing gender identity education hinges on the students ability to clearly communicate that they want the education, and assumes that education in of itself does not provide the knowledge to the student of what they need. Even when attempting to be person-centered, this approach is suppressing sex education.
  • Discussion Through our grounded theory analysis of interviews with sex educators, we identified the context under which sex education is provided (hostility toward the sexual expression of people with intellectual disability). The hostility toward sexual expression exists within a broader context of lack of standardization of instruction, and often, broad hostility toward sex education that generally exists in our society and especially for people with intellectual disability.
  • Discussion The hostility that exists towards the sexual expression of individuals with intellectual disability is reified through a variety of means, such as: Emphasizing risk of sexual abuse to the point of making it seem as if that is the only experience of sexual contact for people with disabilities. Desexualizing people with disabilities and conscripting them to asexuality through sex education, teaching only to avoid sexual contact rather than teach how to properly manage sexual encounters. Not centering the education on the lives of people with disabilities, denying them the autonomy over their own lives.
  • Discussion In response, sex educators empowered the sexual expression of people with intellectual disability by: Having person centered values by highlighting the importance of individualized instruction, challenging providers policies, and provided an education that was accessible to those without disabilities. Having self-advocates as teachers or partners or were self advocates themselves such as calling out emphasizing risk and reporting a greater need for instruction that addressed positive sexuality. Using subversiveness to get caregivers and service providers to buy into sex education.
  • Conclusion The mechanisms we identified can be further explored in the literature and utilized in trainings for current and future sex educators. It is not sufficient for individuals with intellectual disability to have access to sex education. They need access to sex education that enables them and that, in and of itself, challenges the hostility to the sexual expression of people with disabilities.

Understanding Appropriate and Applicable Sex Education Instruction for Students with Intellectual Disabilities

Stoffers, M. & Curtiss, S.L. (2024). Understanding appropriate and applicable sex education instruction for students with intellectual disabilities. Remedial and Special Education, Online First. https://doi.org/10.1177/07419325241261055 |

A preprint of the whole article free and a summarized version is below

  • Understanding Appropriate and Applicable Sex Education Instruction for Students with Intellectual Disabilities Sarah Curtiss, Ph.D. School of Education, University of Delaware Orcid Email Melissa Stoffers, M.S. Department of Human Development and Family Sciences, University of Delaware Orcid Email Summarized by Jackson Chandler
  • Abstract Although individuals with intellectual disabilities need sex education, little is known about the instructional practices of professionals who provide this education. After interviewing 58 educators about their instruction, 4 themes were identified: Deciding how to individualize Applicability to real life Conceptualizations of age Strategies and challenges of assessing practice
  • This qualitative study was designed in partnership with an advisory board of autistic adults without intellectual disabilities who provided feedback regarding the study’s research questions and interview protocol to help the researchers be attuned to implicit ableism. After approval from the university’s Institutional Review Board, we began interviews with sex educators who (1) were at least 18, (2) worked in the United States, and (3) taught sex education to individuals with intellectual disabilities. We asked sex educators to refer us to other colleagues within their networks to increase our sample size.
  • Procedure: We obtained participants consent prior to the scheduled interview and reconfirmed consent at the beginning of the interview. We asked questions about general instruction, such as “Walk us through what an educational session looks like?” and “What materials do you use to support instruction?” Identifying information was removed from each transcript, and all names were replaced with pseudonyms. Methods In total, we interviewed 58 sex educators for this study who were an average of 40 years of age (range: 21-78) with an average of 9 years of teaching experience (range: 1-37). All participants had received at least some of a college education, and 74% held a Masters or Doctoral degree. All participants educated students with intellectual disabiliites.
  • Data Analysis To analyze the data, we followed Braun and Clarke’s (2021) guidelines. We developed codes by identifying patterns between our notes. Upon identification of a pattern, we assigned definitions and descriptions that defined the boundaries of the pattern. Read the interview transcripts, and identified parts of each transcript that stood out to us, and wrote down our ideas on the connections between the interviews, as well as any lingering questions we still had. Continued analysis of interviews led to more refined definitions as well as more identified patterns. analysis continues until no new patterns could be observed Finally, we made necessary edits to our existing patterns, and went back and applied our patterns to all the data, allowing us to further establish definitions and boundaries. These patterns were then grouped into 4 main themes.
  • Trustworthiness and Credibility To enhance trustworthiness and credibility of our findings, we utilized several strategies, including peer debriefing, member checks, and triangulation of data (Lincoln & Guba, 1986; Morse, 2015) Investigator Triangulation Member Checks Peer Debriefing We invited a network of peers who are experts in qualitative research and disability to review our finidngs, help identify bias, and detect confusing descriptions or errors We also invited several of our participants to review our initial set of themes. This allowed us to garner their reactions to our interpretation of their experiences. Finally, we utilized having multiple researchers throughout the analysis process. Both authors met regularly to review interviews and important themes, as well as utilized a team of undergraduates who coded the full dataset and reviewed assigned codes and questions.
  • Deciding How to Individualize
  • To ensure students were receiving meaningful and accessible instruction, educators turned to individualization. Individualization: Considering the students disability, learning preferences, personal needs, and communication needs when selecting and designing course content. Deciding How to Individualize
  • When specifically asked whether the student’s disability impacts what is taught, educators were largely divided. Deciding How to Individualize Some educators indicated that the student’s disability had no bearing on the educational content of their lessons, but rather it only affected how they went about teaching it. They used strategies such as: Using simpler language Repetition Frequent review Varied teaching styles Concrete examples
  • Other educators noted a more nuanced relationship between disability and personal history and experience, which might affect educational content. Deciding How to Individualize Alex, and educator with one year experience, said this: “So I wouldn't say, necessarily, that their disability, per se, impacts what gets taught, but it does definitely impact what they've had contact with in their learning history. I think it definitely impacts the behaviors that they're already engaging in, in their environment. And so just centering on what's going to be most meaningful...”
  • While disability was not the sole reason Alex made changes to their educational practice, instructional choices were impacted by disability. The quote is alluding to the societal stigma that exists around individuals with disabilities. For instance, the infantilization of individuals with intellectual disabilities can lead to restrictions preventing access to normative educational or social experiences, which could affect what sex education instruction is applicable. Deciding How to Individualize
  • While educators had varying viewpoints about whether a student’s impairment influenced lesson content, all agreed that it was important to consider the individualized needs of the student when designing instruction. Deciding How to Individualize These instructional design decisions were sometimes made in advance based on what the educator knew about the students, “If they’re a better visual learner, then I’ll bring more visual materials. If they’re better audio learners, I’ll bring a video, to make sure that there’s the audio component.” (Quinn, two years of experience). However, at times, educators individualized instruction in the moment, based on student understanding and reaction to the content. “{Gender identity] is something that doesn't really play by the rules, and so it doesn't feel right to boil it down so much, but at the same time you kind of have to, or some students aren't going to get anything from it.” (Maria, one year of experience)
  • Deciding How to Individualize Individualization for understanding was not the only example of accommodation. For instance, with eight years of experience, Chris discussed how he worked with a student with cerebral palsy to help the student masturbate more successfully: “So I taught him basically to find the parts of his hands that felt good, or soft - because a lot of parts of his hands were calloused… So he had homework where he explored on his own to find which part of the hands to use, came back to session, and then we did that [modeling masturbation] with the model dong [sic].”
  • Deciding How to Individualize Communication was also considered when individualizing content. For students who communicated through assistive technology devices, educators described needing to create a safe classroom space to support these students. “So that looks like having his communication partner with him and having an agreement sort of made before class begins at all about respecting people’s styles and giving people time to communicate” (Mia, two years of experience).
  • Deciding How to Individualize Another strategy that educators described to support students who were nonspeaking was to incorporate activities that allowed choice responses. Deciding How to Individualize For instance, Elena, an educator with five years of experience, described an activity using an eyepiece, “So I will say like, ‘Okay, so this one is public and this one is private,’ and I’ll show them a picture and have them eye gaze for me. And then I’m able to get their answer that way.” Other educators described using manipulatives or visuals to allow students to express their understanding and engage with lessons, “We use choice activities and sorting activities” (Kaylee, 14 years of experience).
  • Deciding How to Individualize Other educators described using manipulatives or visuals to allow students to express their understanding and engage with lessons. “We use choice activities and sorting activities” (Kaylee, 14 years of experience). Choices for responses were also used, “If they don’t want to write, they can say something out loud. Or if they cognitively are not able to communicate an answer, to have someone write it down, they could draw a picture” (Evelyn, two years of experience). To address the communication needs of students, educators emphasized diversity of activities and responses.
  • Deciding How to Individualize Educators also talked about encouraging students to use nonverbal communication to address lesson objectives (Victoria, 32 years of experience):“Okay, I’m coming into your space. What do you do? A lot of my students have receptive skills, but don’t have a lot of verbal skills. I don’t need them verbal. I need you to show me, because perpetrators don’t care if you’re verbal or not. They’re going to perpetuate.” Educators prioritized students being able to communicate understanding of the lesson through whatever means best supported the student.
  • Applicability to Real Life “I Want to Teach Them Behaviors They Can Use”
  • Applicability to Real Life In addition to wanting to individualize instruction, educators described a desire to ensure that educational content was applicable to the lives of the students they supported. To do this, educators reported making decisions about what applied to the life of the student, which were influenced by personal beliefs and values, as well as by the voices of stakeholders, including students, parents, and teachers. Additionally, educators wanted to design instruction that addressed students’ cultural identities to ensure the applicability of content for the students.
  • Applicability to Real Life Educators had different strategies for selecting content they believed would be applicable to the lives of their students. For some, educational content was designed in consideration of what the educator believed the student needed With 10 years of experience, Rachel, described targeting the topic of relationships because she believed her students needed support in this area: People who have maybe PCAs [personal care assistants] or a para or a direct support person. They think, oh these are best friends. So we really talk about, “What’s a professional relationship, a friendship? What does it mean to have a romantic partner?” Your romantic partner has to know they are your romantic partner. We get a lot of, "Taylor Swift is my girlfriend." I'm like, "Oh, she's not."
  • Applicability to Real Life Educators also decided to cover content on topics they valued, such as empowering their students. Although, this means often contending with heteronormative systems. (Amelia, 1.5 years of experience):“The assumption that people with disabilities are asexual and that they don’t ever question their gender and sexuality. So it’s really important to me that I stress to people, ‘If you question X, Y, and Z, that's okay. If you have variations in physical body parts other than what you're seeing in these pictures, that's okay.’” Amelia’s values and understanding of best practices in sex ed instruction were a driving force in how she selected applicable educational content for her students–instruction that normalized human differences
  • Applicability to Real Life To combat systemic discrimination, some educators purposefully selected media content for their instruction that depicted interracial, same-sex couples of different ages to “normalize the fact that not everybody is white and heteronormative” (Grace, three years of experience). Educators viewed the selection of media within their instruction as a critical component of ensuring content was applicable to all students.
  • Applicability to Real Life Sometimes educators select content with the input of other stakeholders. In some instances, this was from the student themself, “Whatever they ask about, whatever they're interested in is important for them to know…I try not to dictate or predetermine what those important topics are.” (Simone, three years of experience). Educators believed that by allowing students to select lessons and topics, the students would be more likely to be able to apply the lessons they learned to their lives.
  • Applicability to Real Life In addition to students helping select content, educators reported that parents, caregivers, or the student’s teachers sometimes requested certain topics be covered because of a concern or problematic behavior. Therefore, educators tried to address these topics within their instruction. For example, Kari, an educator with 1.5 years of experience, described a common parental request, “We've had a lot of parents approach us because they're concerned that their kid is not choosing ethical pornography and they just don't know how to have that conversation.” Elena described a common teacher request, “When it comes to the most requested things that we often get, a lot of times teachers will request that we talk about public versus private places and body parts and understanding what is the difference.” Both Kari and Elena incorporated instruction to address these concerns with their students.
  • Applicability to Real Life While educators did select content using their own personal values and by consulting with other stakeholders, they also sought to make sex education more applicable to the lives of their students by using strategies to make their instruction more culturally inclusive. For example, Mia described her instruction as “values inclusive,” going on to define this as, “Regardless if a family has a different religious background or you have some cultural expectations that may be unique or whatever it is, we accept everybody and we don’t teach values.” Educators like Mia described providing factual content and encouraging students to discuss values, such as sex before marriage, with family members.
  • Applicability to Real Life Additionally, educators reflected on their own practices to enhance accessibility and applicability for all. Emily, who has five years of experience, discussed this reflective practice: “I’m trying to understand how to express and explain the fact that sexuality in the U.S. is predicated on anti-Blackness and anti-indigeneity. How do I do that in a way that is meaningful?” Emily, like other educators we interviewed, believed developing anti-racist instruction to support all students was essential, but wasn’t confident in how to design this instruction to ensure it was applicable to students.
  • Although educators wanted to design instruction applicable to the lives of their students, they sometimes faced barriers. Chris expressed this concern, Applicability to Real Life “We can’t teach people about sex and sexuality, and then not give them access… I want to teach them behaviors they can use.” Later in the interview, Chris provided a specific example of this challenge, “We wanted you to teach him all of that so that he knew to stay away.” And I’m like, “No, no, no, no. No. He didn’t learn this for nothing”… If you’re just going to take this away anyway, why’d you make him learn?
  • Applicability to Real Life Finally, despite a desire to ensure content was applicable and relevant for their students, educators sometimes noted moments when their instructional practice did not achieve this goal. Jeanne, an educator with 20 years of experience, described a story involving one of her students when she realized an error in her instructional method: “I kept saying to an individual–a deaf individual with intellectual disabilities who was preparing to go away for a weekend with his girlfriend, “Always use a condom. Always use a condom.” … He came back the next week, and he was like, “Well, here was the problem. I couldn’t get the condom to stay on… When we were done, it wouldn’t stay on. You said to always leave the condom on.” He was so literal. He thought the whole time, like the whole weekend. And I’m like, “Oh, crap”... That’s on me.”
  • Conceptualizations of Age “Depends on the Age and How Much the Person’s Going to Understand”
  • Conceptualizations of Age Adjacent to the discussion of applicability was the idea of age. As educators considered the design and implementation of sex education instruction, they focused on what was appropriate for the student, which often led to discussion of age. For instance, when Patricia, an educator with three years experience was asked how she would design a consent lesson, she responded, “So, that’s a little bit of an interesting question because it really depends on the age and how much the person’s going to understand.”
  • Conceptualizations of Age A clear delineation for educators was the legal age of majority and the legal age of consent. Thus, sex education content was designed with state and United States laws in mind. For some educators, this influenced the types of images they showed to their students. Sienna, an educator with 12 years of experience, described how the age of majority should be considered when selecting appropriate images, “You can’t use educational porn for somebody under the age of 18. It’s just against the law in the United States.” When offering visuals for students, educators described the need to consider the legality of the provided materials.
  • Conceptualizations of Age The way in which educators approached certain topics or content was also dependent on the student’s age and existing laws. Peyton, who has two years of experience, specifically identified subject matter that might be discussed differently for those above and below the age of majority, “If you’re talking about sexting and everyone’s over the age of 18, that’s a different landscape than if folks are under 18.” Recognizing the potential legal ramifications of sexting under the age of 18, Peyton approached this topic with adults in a different manner than she did with minors.
  • Conceptualizations of Age Additionally, addressing the legality of an individual’s actions and helping students to know the laws was important to educators (Eva, six years of experience): “That’s really the only thing I think of when I think of age, is like, is it legal? Anything else is, in my opinion, just judgment. So if somebody wants to learn about it, I don’t care how old you are. As long as it’s super, super clear what behaviors are legal.”
  • Conceptualizations of Age For other educators, age was not just considered in the context of law. Educators debated whether instruction should be designed based on the individual’s chronological or developmental age–a construct that examines the relationship between one’s intelligence quotient (IQ), skill level, and chronological age to compare individuals with intellectual and developmental disabilities to those without disabilities (Russo et al., 2021).
  • Conceptualizations of Age Proponents of designing instruction to target chronological age suggested that providing age-appropriate instruction is a form of respect (Camille, 20 years of experience): “A lot of people struggle with not seeing people with disabilities as children and so treat them as children, and that we really need to treat them as their age… I think that's a piece that's important, that we treat people with disabilities with that respect and age awareness.” Other educators also emphasized providing education for experiences that happen to everyone relative to chronological age.
  • Conceptualizations of Age Other educators disputed using chronological age, instead arguing that curricula should be modified for the student’s perceived developmental age. Simone described her process for creating lessons for her adult students whom she described as developmentally around middle school age “So, then we develop lessons and activities in a way that we would for middle school students… I can’t talk to someone with a disability as I would a 47-year-old, because cognitively, we’re not 47.”
  • Strategies and Challenges of Assessment “I don’t know how to measure sexuality”
  • Strategies and Challenges of Assessment Assessment occurred through a variety of avenues including through anecdotal assessments, informal and ongoing assessments, and through formal assessments. Although some educators felt quite confident in their ability to assess student learning, other educators felt assessment was challenging and even questioned its validity.
  • Strategies and Challenges of Assessment Many educators used anecdotal evidence to assess instructional practice and student learning. This data was often collected from caregivers, staff, or the student themselves and related to events that occurred outside the classroom settings. Denise, an educator with 37 years of experience, describes a student revealing sexual abuse to her parent as evidence of effective instruction: “A girl who the grandpa actually was touching her inappropriately. And the girl came downstairs and said, ‘Mom, so-and-so touched my private parts and that’s mine and he broke the rules.’” Denise viewed this disclosure as evidence that the student had internalized the sex education instruction she had received.
  • Strategies and Challenges of Assessment In addition to disclosures of abuse, educators also pointed to success stories they heard about their students. Angela, an educator with 30 years of experience, described one such story: “I heard actually from the boyfriend. He was like, ‘You ruined my date… I put my arm around her and she said, Angela told me that you have to ask, otherwise you can’t do that.’ I was like, ‘Okay, it’s working!’” Hearing anecdotal stories of students who referenced course material, like Angela’s student, helped educators feel validated that their instruction was working.
  • Strategies and Challenges of Assessment Other educators pointed to being asked to provide more instruction as an indicator of efficacy. Reese, an educator with 10 years of experience, described organizations inviting her back as a sign of success: “I would say nine times out of 10, people will reach back out to us. So to me, that is at least some measure of success or at least people like what we did enough to call us back.” Educators believed that being asked to provide additional classes or having students continue to attend their classes were signs that their instruction was reaching the target audience.
  • Strategies and Challenges of Assessment Another way educators assessed students was through ongoing and informal assessments which can occur through quick activities within the classroom. “Reading how people are reacting in the discussion - are people saying things that are relevant? Are people saying things that make sense” (Maria). Educators also asked questions to check for understanding. “So with a question or a prompt, if they're able to answer something correctly, that's a really good sign. Also, at the end of our lessons we will have review questions and do it as a group.” (Evelyn).
  • Strategies and Challenges of Assessment Educators also used informal assessments like homework or exit slips to assess student learning. For example, Charlotte, an educator with four years of experience, described how homework assignments were helpful in understanding students’ thought processes: “When they submit their homework assignments, I can see from there, based on their answers, where they are. I can see if they totally get it, if they kind of get it, or if they’re totally off base.” Educators believed these informal assessments provided a clear picture of whether students were grasping the material and if students needed additional support to further develop their understanding of the content.
  • Strategies and Challenges of Assessment In addition to anecdotal and ongoing and informal assessments, educators utilized formal assessments to assess instruction and student learning. For many educators, these formalized assessments were pre- and post-test administered before and after instruction was provided. David, an educator with 10 years of experience, explains this pre- and post-test process: “At the beginning of the course when we kind of ask them all the questions of what do they know about - we have a bunch of things we ask them about. At the end of the course, we go back to those same questionnaires and look at them, and how they may answer again, and compare the answers and see what they think.”
  • Strategies and Challenges of Assessment Other educators utilize quizzes or exams to assess student learning. For example, Jeanne described her final exam: “It was the steps of putting on a condom. And I blew it up and they had to put them in order.” Other educators formally assessed student learning through practical means, such as by connecting with students via social media to assess internet safety, like Chris: “I’m going to go online. I’m going to act like Selina Kyle from Catwoman and I’m going to flirt with Bobby Joe over here. And when I flirt with Bobby Joe, I’m going to see if I can get him to give me his PPI [private, personal information] within three exchanges.”
  • Strategies and Challenges of Assessment The level of confidence educators felt towards assessment of their instruction and student learning largely varied. While some educators believed they knew exactly how to effectively assess students, others were less confident. For example, Jacqueline described the challenge of determining if students experienced lasting change: “We can show that people have increased knowledge… It’s pretty hard for me to say like, ‘Yep, this person got six sessions and in two years they’re still going to be using condoms all the time.’”
  • Strategies and Challenges of Assessment The student’s impairment could also influence the efficacy an educator felt towards their instruction. For example, Rose, an educator with six years of experience, described a time when she struggled to assess student learning: “A group of students that we had a couple times were all nonverbal students. It was never totally clear how much they were retaining from class to class or from week to week.” Multiple educators indicated an uncertainty with how to assess students who did not communicate verbally or who had low literacy skills.
  • Strategies and Challenges of Assessment Some educators questioned the purpose or validity of assessment. For example, Cole, an educator with 10 years of experience, described the limitations of assessing student learning, “Safe sex is easy with I think, maybe doing some pre-teaching or just some role play demonstration, how you do this. Obviously, you can't be there for the act, so that becomes a unique challenge.” Cole recognized that, although he could teach skills to his students, he didn’t necessarily have the ability to assess the implementation of those skills.
  • Strategies and Challenges of Assessment Educators recognized increased student knowledge may not lead to behavioral changes. Additionally, some educators questioned whether it was appropriate to utilize traditional means of assessment within the sex education field. Chloe, an educator with 15 years of experience, expressed this concern: “You could measure it like vagina means A, B or C. It's social emotional stuff. I can measure how many DRs [direct referrals] a kid gets. I can measure that they have gone out to lunch with their friends, but I don't know how to measure sexuality. How would anybody do that? I sure as hell don't want anybody putting any measure up to me on that.”
  • Conclusion Through the 4 themes, deciding how to individualize, applicability to real life, conceptualizations of age, and strategies and challenges of assessing practice, we’ve been able to narrow down the various instructional practices of sex educators with students with intellectual disability. We’ve been able to see how things such as an educators values, perspective on disability, and biases can all affect how sexual education is taught, as well as how respectfully and effectively teach sex education to students with intellectual disability.

Sex Education Incorporating High-leverage Practices for Students with Autism and Developmental Disabilities

Curtiss, S.L. & Stoffers, M. (2026). High leverage practices and sex education for students with disabilities. Intervention in School and Clinic, 61(5), 226-237. https://doi.org/10.1177/10534512261421510    


A preprint of the whole article is free, and the summary is below.

  • Abstract Students with developmental disabilities, including autism, have the right to access age-appropriate sex education being provided to their peers, but often don’t receive the same education due to a lack of specialized instruction, resources, and educator training. This article provides guidance and examples on how to effectively teach sex education to students with developmental disabilities and/or autism, as well as how sex education can be included in an IEP.
  • Students with developmental disabilities and/or autism recieve less sex education Despite calls for inclusive sex education for students with disabilities (Sexuality Information and Education Council of the United States [SIECUS], 2021), students with autism and developmental disabilities have less access to sex education than peers with other disability diagnoses and peers without disabilities When they do have it, it is less likely to be thorough, leading to less knowledge about sex and sexuality (Strnadová et al., 2022) Yet, people with autism and developmental disabilities report the same levels of interest and desire to understand sexual relationships as those without disabilities.
  • Why? Federal laws do not mandate sex education, leaving it up to the states, few of which even require accessible sexual education (Schmidt et al., 2021). Parents and educators may believe that students with certain disabilities will not benefit from sexual education, which can restrict access (Holmes et al., 2022; Strnadová et al., 2022). Educator Training Sexual education educators may not have the training to teach students with autism and developmental disabilities (Hole et al., 2022) Educators who are proficient in teaching students with disabilities may be uncomfortable teaching sexual education topics. (Howard-Barr, 2005; Curtiss & Stoffers, 2024) When students with autism and developmental disabilities are given sexual education, it may come from educators who serve many roles within the school, such as teacher, therapist, board-certified behavior analysts (BCBAs), or a community based agency worker. (Curtiss & Stoffers, 2024)
  • Access to training for sex education Center for Sex Education (CSE) Hosts an annual conference that supports how to teach sex education The American Association of Sexuality Educators, Counselors, and Therapists (AASECT) Provides a certification process. While useful, these resources do not provide support for students within special education, so this paper provides recommendations for teaching sex education to students with autism and developmental disabilities, utilizing high-leverage for both clinical and school based settings.
  • High Leverage Instructional Practice
  • High Leverage Practices are organized into four domains: Collaboration Data-driven planning Instruction in behavior and academics Intensifying and intervening as needed.
  • our practices from instruction in behaviour and academics that we will be applying are: https://ceedar.education.ufl.edu/wp-content/uploads/2024/03/High-Leverage-Practices-for-Students-with-Disabilties-updated.pdf Using strategies to promote active student engagement Providing scaffolded supports Using assisted instructional technologies Teaching students to maintain and generalize new learning across time and settings
  • The following examples are authentic situations documented by the authors with the names changed to provide anonymity.
  • Practice One: Use Strategies to Promote Active Student Engagement - Consent
  • Active engagement is an approach to teaching in which students are given opportunities to interact with one another during learning tasks that expand, apply, or integrate knowledge and think about what they are doing (Bonwell & Eison, 1991). The strategy we will be looking at is role-playing.
  • Role-playing is based on the information being targeted, and provides opportunities to showcase multiple perspectives, involves complex and meaningful situations, and supports students in understanding the meaning behind the activities (McDaniel, 2000).
  • The first example is a therapeutic educator using role-playing to support a student to build confidence to clearly communicate non-consent while keeping in mind the sensitive nature of the topic and the history of the student.
  • Gianna is a therapist who works with teens and adults with autism. One of her clients, Lucy, has shared that she has difficulty expressing non-consent to her partner during intimate situations.
  • Step one: Understand the students' needs and align them to the active engagement practice. To support Lucy in developing this communication skill, Gianna chooses a role-play approach.
  • Step two: be aware of the students background, and if content is sensitive and may cause an emotional reaction, adapt the scenario to gradually build up comfort with the topic by starting with easier, low-stress situations. Gianna recognizes that Lucy has significant anxiety about using the word “no.”
  • Step Three: Build roleplay scenarios that are realistic, considering settings, people, and events that are relevant to the student. Gianna suggests that Lucy’s partner participate in the roleplay.
  • Step Four: consider developing a specific script to illustrate a skill (Wolfe et al., 2019). Gianna develops a script that begins with silly requests such as “Can I paint your toenails?” that Lucy will feel comfortable refusing. Building confidence in asserting boundaries in low-stakes situations is important before practicing in more sensitive environments.
  • Consent is a complex skill that requires communication, decision-making, and self regulation skills. Students with autism and developmental disabilities are at increased risk for sexual abuse and thus explicit instruction on consent is critical (Curtiss & Kammes, 2020).
  • The National Sex Education Standards, which can be found here, provide grade-based guidelines for appropriate sex education topics such as: Consent and healthy relationships Sexual health Interpersonal violence (Future of Sex Education Initiative, 2020).
  • Practice Two: Use Scaffolding - Masturbation
  • Scaffolding: A responsive form of instructor-initiated support in which the amount of support are finely tailored to the learners’s individual needs and progress. The goal of scaffolding is to gradually and intentionally transfer the responsibility from the instructor to the learner (van de Pol et al., 2010).
  • Due to the highly adaptive nature of scaffolding, the types of supports and the speed of transferring responsibility is unique to each learner.
  • The next example is of a clinical sex educator named Sally and how she scaffolds the instruction of masturbation from providing the least amount of support to the most amount of support. Due to the sensitive nature of the topic, the educator first provides non-invasive support through a simple explanation, and gradually increases the support as needed by the patient.
  • Step one: Pre-plan scaffolding type, deciding whether the scaffolding should begin with a high level of support that is gradually faded or minimal support that is gradually increased. Due to the sensitivity of the topic, Sally decides to start with the minimal level of support.
  • Step Two: Pre-plan scaffolding options, prepare for students who do not initially demonstrate proficiency by identifying the different levels of support (auditory instruction, visual instruction, manipulatives, etc.) Sally uses stories that explain masturbation and/or a visual schedule of masturbation.
  • Step Three: Consider scaffolding strategies that include the students' support systems, if needed. Due to the sensitive nature of the topic, she decides whether she or a guardian is best to move forward with more intense instruction.
  • Step Four: Identify when the scaffolded supports have successfully met the students needs, then diminish supports while continuously assessing student understanding. Sally does this by continually assessing the students' understanding as they move through the steps of more and more support.
  • While it is rare to provide instruction on masturbation, this is an important area of need for many individuals with autism and developmental disabilities. For example, in focus groups with young adults with intellectual disabilities, many reported that they primarily learned about masturbation from pornography.
  • A nationally representative sample suggests that pornography is the most commonly used source for the intricacies of sexual behaviour for 18-24 year olds, while younger adolescents more often sought out parents and friends for information about sexuality. These findings suggest that early adolescence may be a critical time to provide instruction on masturbation. Additionally, knowledge of masturbation is part of the National Sex Education Standards (Future of Sex Education Initiative, 2020).
  • Practice Three: Use Assistive and Instructional Technologies: Communicating About Sex Education Topics
  • Assistive technologies: technology that helps students complete tasks Instructional technologies: technology that helps students learn. Both can be either low-tech or high-tech
  • An important area of assistive technology is communication – often called Alternative and Augmentative Communication (AAC). Students with autism and developmental disabilities often use AAc to more clearly and fully express their thoughts and ideas. Low-tech examples include using pictures and different colored paper, and high tech examples including ipads with programmable communication software.
  • The third example will be of a sexual education educator named Florence using assistive and instructional technology to support learning through the use of low and high-tech technologies.
  • Step one: consider the communication needs of all students. Florence does this by consulting with the speech and language pathologist at the school to ensure she has a good understanding of each students communication skills and needs.
  • Step Two: Build in strategies that allow students to communicate their understanding in a variety of ways (visually, orally, through movement, etc).Florence does this by including different colored signs to signal understanding or lack thereof for the students to hold up.
  • Step Three: Ensure students who use an alternative communication device have access to the device and that relevant vocabulary is programmed onto the device so that the student can apply it to the lesson. Florence does this by working with educational teams before the lesson who can program the devices, as well as providing topic boards as a low-tech option.
  • When choosing topics for sex education for students with autism and developmental disabilities, students should receive at minimum the same education as their same-age non-disabled peers. Some of the most critical topics are: Consent and healthy relationships Anatomy and physiology Interpersonal violence Gender identity and expression Sexual orientation and identity Puberty and adolescent sexual development (Future of Sex Education Initiative, 2020)
  • Practice Four: Maintain and Generalize New Learning Across Time and Settings - Dating and Unwanted Touch
  • Generalization of Learning: When a skill is retained across environments. This includes setting, time, and people, beyond where the learning first took place (Sears & Cornelius, 2023) When a skill is taught, it cannot be assumed that it will generalize to other environments; there must be support put into place to allow students to use learned skills in various settings.
  • As knowledge and skills in sex education often require retention and use in private settings outside of the classroom, such as the use of contraceptives, strategies to support generalization are especially important.
  • The last example is of an educator named Ginny who discusses two instances of students who took the content learned in the classroom about a lesson on dating and generalized it into their personal lives.
  • Step one: Consider how students may implement a lesson in a setting outside of the classroom. If possible, practice these skills in alternative settings. Ginny applied this step by doing a role-play of asking somebody out in the lunch room with the students.
  • Step two: Use anecdotal evidence to assess learning. One of Ginny’s students, Bobby, told her about how later that day, Bobby went to another student's house and asked the student out. This story was evidence that Bobby hadn’t generalized the information enough, and used it as guidance on teaching what environments to ask someone out in. Anecdotal evidence from students is a strong assessment of generalization, and provides feedback to the educator for any necessary changes to teaching.
  • Step three: Brainstorm ways students may interpret the lessons or skills taught within their own lives and provide clear examples to ensure they do not overgeneralize. Ginny applied this by describing to a student how an accidental touch during a basketball game was not sexual assault, and told her about situations that were sexual assault.
  • Step four: When students overgeneralize, praise them on the components they got correct and provide specific feedback for what they overgeneralized. Ginny did this step by praising the student for coming to a trusted adult when sexual assault was suspected.
  • Culturally Inclusive Pedagogies and Practices (CIPPs) in Teaching Sex Education
  • Cultural inclusivity is inherent to teaching sex education to people with autism and developmental disabilities due to their historical exclusion from domains of sexual life. Still, it is critical to consider the intersectionality of other identities such as: Sexual identity Gender identity Ethnicity
  • The guidance in high-leverage practices for people with autism and developmental disabilities has critical considerations for CIPPs that should be applied when teaching sexual education. Presume competence Engage in professional reflection Prioritize lived experiences Consider language Analyze through an intersectional lens Connect with disabled communities
  • It is typically encouraged that educators remove their own values from instruction, but there is no clear path in the domain of sex education. Values may include: Gender Equality Abstinence only Abstinence first It is important to consider that values get codified into law (Kaley, 2020), so keep this in mind when planning instruction.
  • Basic steps such as representation within instruction materials are important, but CIPP goes deeper than basics to consider how sex education can cause harm (Curtiss & Stoffers, 2025). Flexibility and a learner-centered teaching approach are essential to CIPP in sex education.
  • Sex Education in the Individualized Education Plan (IEP)
  • One way to ensure students with autism and developmental disabilities are provided with accessible sex education is to write goals in the Individualized Education Plan (IEP) related to sex education. Although IEPs are not used in clinical settings, the goals provide examples of how therapeutic goals in the area of sex education could be written.
  • It is common for students with disabilities to not receive sex education that has been adapted to their learning needs (Holmes et al., 2022; Holmes et al., 2021). In the absence of adapted sex education, some people experience sexually inappropriate behaviour (Curtiss & Kammes, 2020). There are a variety of ways and examples on how sex education can become a part of the IEP. Example a is when sex education becomes a part of the general but may need to be adapted Example b is when sex education is a part of a behaviour intervention plan And example c is when sex education is implemented into related services
  • First, sex education can be implemented into the IEP when the general education curriculum isn’t sufficient to a student's learning needs. This ties into high-leverage practice of data-driven planning which includes enacting an action plan based on student data and analysis. A specialized curriculum may use simplified language to describe biological terms, have more lessons with lesson content covered in each lesson, more opportunities to review and reflect on previously learned content, and use multimodal instructional materials.
  • The goal for adapted sex education is for it to be introduced proactively in an IEP meeting, but still can be used reactively when a student's needs aren’t met. Accommodations, Modifications & Support Specialized curriculum Extra time to complete assignments Check for understanding Visual and verbal prompting Chunking of tasks Flexible seating as needed Use of noise-canceling headphones Self-reflection time- check in/check out Redirection to task Service Type of Delivery Frequency Duration Setting Counseling Services Small Group 1 Time per school week 30 minutes per session Special Education Setting Counseling: Social Skills Domain Sex Education Present Levels of Educational Performance (PLEP) Currently, when presented with a standard sex education curriculum delivered by a public health educator, [child] is able to identify 1 out of 10 changes associated with puberty in 3 out of 4 trials. Counseling: Social Skills Domain Sex Education Present Annual Goal When provided with adapted 5th-grade puberty education, [child] is able to identify 8 out of 10 changes associated with puberty in 3 out of 4 trials for three consecutive sessions.
  • Secondly, sex education can be implemented in a behavior intervention plan (BIP). These plans are designed for students who exhibit problematic behaviours within a classroom that are related to their disability. While problematic sexual behaviour is unlikely to be related to disability, it may be a piece of the behaviour that is a manifestation of disability.
  • In the example, a student is exhibiting the problematic behavior of not understanding bodily autonomy nor the norms associated with touch. Since these norms fall under the domain of sex education, a student may never receive explicit instruction on these areas without it being written into the IEP.
  • Note that this approach is aligned with the high leverage practice domain of intensifying and intervening as needed, as it reinforces the importance of a full continuum of instructional supports (Hayes, et al., 2024). Accommodations, Modifications & Support Explicit instruction on boundaries and bodily autonomy Explicit instruction on privacy including private, public, and semi-public body parts, spaces, thoughts, and activities Communication system for requesting sensory input Communication system for initiating conversations Visual schedule of sensory diet Practice inhibiting touch through play Video self-modeling AAC Device Service Type of Delivery Frequency Duration Setting Counseling Services Individual 1 Time per school week 30 minutes per session Special Education Setting Behavioral: Present Levels of Educational Performance (PLEP) While engaged in whole-class instructional activities or individualized instruction, before [child] uses physical initiation, [child] currently uses pro-social communication strategies taught and modeled in 4 out of 10 trials as measured by weekly data sheets. Behavioral: Annual Goal While engaged in whole-class instructional activities or individualized instruction, with two to three prompts, [child] will utilize the pro-social communication strategies (defined above as target replacement behavior) taught and modeled in 8 out of 10 trials with 75% accuracy for three consecutive sessions.
  • The last example of sex education in the IEP is within the domain of consent, and the goal is focused on communication. This example highlights the role of related services in providing sexual education and is aligned with the high-leverage practice domain of collaboration as it highlights the need to understand a students holistic instructional needs and plan for joint progress, monitoring, and instruction (Billingsley et al., 2024).
  • Related service can provide the additional instruction often necessary when the topic benefits from additional socioemotional support, such as sexual education. Additionally, there may be content areas that are important for a specific student to learn but are outside the sex education that is typically provided.
  • Notably, while this can be applicable to refusal of sexual encounters, the measurement of the skill of refusal was limited to non-sexual, naturalistic opportunities that would exist in the classroom. Accommodations, Modifications & Support Explicit instruction on boundaries and bodily autonomy Explicit instruction on consent Communication system for refusing, which includes multiple strategies Practice refusing touch through role-playing Video self-modeling Authentic opportunities to refuse Service Type of Delivery Frequency Duration Setting Counseling Services Individual 4 Times per school week 15 minutes per session Counselors’ Office Communication: Present Levels of Educational Performance (PLEP) When given opportunities to refuse tasks or activities, [child] currently indicates refusal appropriately using 2 out of 10 trials. Communication: Annual Goal When given opportunities to refuse tasks or activities, [child] appropriately indicates refusal using one of three specifically taught strategies 9 out of 10 trials for three consecutive sessions.
  • Conclusion As exemplified by practicing sex educators as well as portions of example IEP’s, there are numerous high-leverage practices available for educators, such as active student engagement, scaffolded supports, assisted and instructional technologies, and generalization, as well as strategies to utilize when including sex education in IEPs.
    Elevatus Footprints Friendship & Dating Program Sexuality education curriculum designed for people with developmental disabilities. Offers resources for self-advocates, professionals, and families. Evidence-based curriculum designed for individuals with intellectual and developmental disabilities to support healthy relationship building and violence prevention. Workbook designed for individuals with developmental disabilities who exhibit problematic sexual behaviors to develop healthy behaviors and relationships.
  • Additional Resources - Curricula Elevatus Sexuality education curriculum designed for people with developmental disabilities. Offers resources for self-advocates, professionals, and families. Footprints Workbook designed for individuals with developmental disabilities who exhibit problematic sexual behaviors to develop healthy behaviors and relationships. Friendship & Dating Program Evidence-based curriculum designed for individuals with intellectual and developmental disabilities to support healthy relationship building and violence prevention.
  • Additional Resources - Curricula Continued Mike’s Crush Curriculum designed for teenagers with autism and intellectual disabilities to support development of healthy relationships through instruction on social cues and behaviors. Sexuality for All Abilities Inclusive sexuality education curriculum with editions to support instruction in schools or for adults to assist individuals in establishing and sustaining safe and healthy relationships.
  • Additional Resources - Videos and Online Resources Adapted for Individuals with Disabilities The Birds and the Bees A website of resources and materials about human sexuality intended for individuals with autism and developmental disabilities and their educators. National Council on Independent Living A series of videos for and by people with intellectual and developmental disability that covers a variety of sex education topics. Organization for Autism Research A nine-module guide to sexuality and sex education written for and by Autistic individuals.
  • Additional Resources - Videos and Online Resources Adapted for Individuals with Disabilities Continued
    Planned Parenthood of Delaware Video series of sex education topics offered in American Sign Language. Sexual Health Equity for Individuals with Intellectual and Developmental Disabilities (SHEIDD) Sexual Health Equity for Individuals with Intellectual and Developmental Disabilities (SHEIDD) List of sexual health resources to support individuals with intellectual and developmental disability to understand their rights, self-expression, and how to form healthy relationships.
  • Sex Education Incorporating High-leverage Practices for Students with Autism and Developmental Disabilities By Sarah Curtiss & Melissa Stoffers
    Additional Resources – Videos & Online Resources Not Adapted for Individuals with Disabilities Advocates for Youth Provides a variety of educational materials, tools, and resources to support youth activists, professionals, and parents in advancing sexual and reproductive health rights. Amaze Offers age-appropriate animated videos for children and pre-teens to learn about puberty, sexual health, and relationships. National Coalition on Sexual Health Promotes sexual health through provision of resources, information, and tools to educate the public and healthcare providers about sexual health. Teach Consent Offers resources for parents and educators to use to support the understanding and importance of consent among adolescents.

Sex.Ed.Agram: Co-created Inclusive Sex Education on Instagram

Curtiss, S.L., Myers, K., D’Avella, M., Garner, S., Kelly, C., Stoffers, M., & Durante, S. (2023). Sex.Ed.Agram: Co-created inclusive sex education on Instagram. Sexuality and Disability, Online first, https://doi.org/10.1007/s11195-023-09794-y

A preprint of the whole article is free, and the summary is below.

  • Co-created Inclusive Sex Education on Instagram Sarah L. Curtiss, Kaitlyn Myers, Melissa Stoffers, Madison D’Avella, Sarah Garner, Cailin Kelly, & Sarah Durante
  • Introduction
  • Lit Review Sexuality Core component of human experience Encompasses sex, gender identities, roles, sexual orientation, eroticism, pleasure, intimacy, & reproduction (WHO, 2022) Salient during emerging adulthood (Gómez-López et al., 2019) Disability Stigma about sexuality and disability (Pelleboer-Gunnik, 2018) Expressed sexuality is perceived negatively (Kempton & Kahn, 1991) People with disabilities are infantilized and perceived as asexual (de Wit et al., 2022) Leads to repression of sex education (Aunos & Feldman, 2002) Crip Theory Derived from queer theory and critiques normativity (McRuer, 2006) Those with intellectual disabilities inherently deviate from the norm (Löfgren-Mårtenson, 2013) Restrictive scripts discourage curiosity about one's own sexuality (Ferrante & Oak, 2019)
  • Program Description Group comprised of college students with and without disabilities Spreads inclusive and reliable information about sexuality on Instagram Self-directed, inquiry-based learning
  • Research question How do we bring everyone’s different ideas about sex and sex ed together into content for Instagram?
  • method
  • Community-based Participatory Research (CBPR) Community members act as researchers to enact social change and facilitate co-learning (Hacker, 2013; Huffman, 2017) Thematic Analysis Systemic coding of interview transcripts to create conceptually cohesive themes (Terry et al., 2017)
  • Participant Participation 1. undergrad 2 grad student 3 undergrad 4 undergrad 5 faculty advisor 6 undergrad 7 undergrad 8 founder 9 CLSC student
  • Analytic Steps Famiarization Reading and writing analytic memos (~10 per interview) Pattern meeting & member checking Debriefed familiarization, discussed initial patterns, got feedback from other members Initial coding Gave succinct labels to pieces of data we hoped captured important features of the data Intitial theme development Grouped codes together based on similarities Focus coding Returned to the full data set with initial codes and themes Final Theme Development Revised initial themes based on broader ideas from focused coding
  • Findings
  • Three Themes Blurring the Lines Between the Educated and Educating Learning is Dependent on the Strengths and Weaknesses of Our Connections Committed to Inclusivity but Wrestling with Ableism
  • Blurring the Lines Between the Educated and the EducatingAs participants were teaching others through the Instagram posts they created, they were learning themselves through the post development processHow Learning Happens: Co-creation Inquiry Instagram What We Learn: Competence in the Area of Sex Education Facilitation, Research, & Instructional Skills
  • “I like that we can come up with ideas on our own and that we work together, that we give constructive feedback to everyone. I think the large group meetings and the constructive feedback is what really makes our group successful. Because I feel without that, there would've been a lot more mistakes or stuff missed or ideas missed if we didn't do that.” — Participant 4 (four semesters)
  • How Learning Happens: Co-creation Co-creation is the collaboration between people with different backgrounds, ideas, identities, and abilities. Co-creation between the participants of Sex.Ed.Agram allowed for people to learn from each other due to the diversity within the group.
  • How Learning Happens: Inquiry Sex.Ed.Agram is inquiry-based, meaning that the participants are able to research whatever they are curious about in regards to sex education. The program fostered participants’ learning through researching the answers to their own questions or intrigues.
  • What We Learn: Competence in the Area of Sex Education Participants shared how they were educated through their participation in Sex.Ed.Agram in regards to Competence in the Area of Sex Education. Because all of the topics explored were chosen by the group, members of Sex.Ed.Agram learned about sex education topics that were relevant to them as young adults that may not have been covered in more traditional programs.
  • What We Learn: Facilitation, Research, and Instructional Skills The participants shared what they learned though becoming an educator in Sex.Ed.Agram. For instance, participants learned how to coordinate and run a group. Sex.Ed.Agram allowed for various leadership positions throughout the group.
  • How Learning Happens: Instagram is a Digital Learning ToolInstagram is a tool that allowed for information to be shared with others outside of the group. Participants used Instagram for educational purposes other than sex education, and felt it could be a reliable source. Another aspect of Instagram is that the platform and its users value aesthetics and visually appealing things. However, when it comes to education, the visual appearance is not always the top priority over the content. Despite this challenge, the program enabled participants to be educated while creating sex education posts.
  • Learning is Dependent on the Strengths & Weakness of Our Connections In order to educate others, it was necessary for connections to be established and maintainedUnique Perspectives Other People Needed at the Table Feeling Heard Social Features of Instagram Young Adult-Oriented
  • “It's a safe space, I guess. I feel like especially last week we were talking about, I think, the difference between a romantic and sexual attraction and all that fun stuff. I think it's a good place to ask questions because no one's going to be like, ‘Oh, that's ridiculous that you don't know that,’ or, it's not like that big of a deal.” Participant 7 (four semesters)
  • Unique perspective Sex.Ed.Agram is made up of people with varying backgrounds and experiences. Members of Sex.Ed.Agram felt that their connections with others who have unique perspectives strengthened their ability to learn. Being able to collaborate with people who had different experiences and opinions allowed for diverse connections to be made.
  • Other People Needed at the Table In order to ensure that the information we shared was as inclusive and relevant as possible, it was necessary to consider who would benefit from our content and who we could recruit to join the group. We felt it was important to create content that was accessible and relevant to those with intellectual disabilities, and so we focused on recruiting a mix of disabled and nondisabled members. By doing so, we aimed to receive input regarding which topics related to sex education our members felt were undertaught or perhaps not usually considered important lessons for those with disabilities in a traditional education setting. In addition, the process of recruiting new members involved building connections and relying on those we had already created to successfully find new members.
  • Feeling Heard Members of Sex.Ed.Agram are encouraged to share their ideas and ask questions when a concept is unclear. Open communication and lack of judgment have created a safe space where members feel comfortable educating themselves and others. The safe environment allowed for connections to be made among group members as they openly discussed concerns and questions.
  • Social features of Instagram The social features of Instagram allowed us to create connections by ensuring our content was relatable, accessible, and appealing. Instagram has many features that allow accounts to create relationships with their followers. People can send direct messages, comment, and share content. Social media makes it easy to connect with other people who have similar interests and ideas, thus enhancing our ability to educate through the application.
  • Young Adults-Oriented The content created by members of Sex.Ed.Agram is targeted towards young adults who are interested in learning about sexuality and relationships. Participants were excited about working with their peers to create content for people their age. Through Sex.Ed.Agram, people had the chance to build relationships and learn with other young adults who may also have had questions about sexuality. Working with other young adults created a safe space in which participants felt more comfortable sharing their ideas and questions.
  • Committed to Diversity but Wrestling with AbleismThe tension between desiring to create a welcoming space while struggling with potentially ableist group dynamics and practicesFills a Gap Valuing Diversity Accessible Practices Ableism Gaining Cultural Competence
  • “Sort of emphasizing that idea of giving voice to the community that you're trying to reach and sharing that you have people with disabilities within your content creation, and also making sure that you're offering those opportunities without idealizing.” — Participant 2 (four semesters)
  • Fills a Gap Sex.Ed.Agram was created to address what participants identified as a lack of inclusive, sex-positive, non-heteronormative sex education for emerging young adults.By supporting the collaboration of people with and without disabilities in creating accessible sex education content, the program fills the gap in sex education with regards to both the inclusion of people with disabilities. The program also fills the gap in regards to the incorporation of sex-positive content.
  • Valuing Diversity The purposeful inclusion of people with and without disabilities in an effort to fill a gap in current sex education was noted by participants as a positive aspect of Sex.Ed.Agram. The diverse population causing an increase in the inclusivity of our content. With regards to Sex.Ed.Agram, we had active participants with and without disabilities creating the content to ensure that our Instagram posts were relevant to young adults and also not offensive or inaccessible to people of different identities and orientations.
  • Accessible Practices An extension of valuing diversity was seen in the program’s commitment to accessible practices. Participants emphasized a commitment to utilizing inclusionary practices to accommodate people of different processing styles and to develop content that was accessible. In Sex.Ed.Agram, students were able to visit a topic multiple times, reviewing previous information learned and doing further research during each session, thereby ensuring that people of different learning abilities had time to absorb information and contribute their own unique perspective. The program also had an editorial procedure to ensure that anyone would be able to understand the information available within our Instagram posts. When small groups made the posts, they were instructed to use simple and direct language while explaining a topic.
  • Ableism Although Sex.Ed.Agram was dedicated to uplifting marginalized voices via the use of accessible practices that enabled equitable participation, the members still felt ableism at work within the group space. Participants discussed tensions in the form of power dynamics. Further- more, the group members in leadership roles within Sex.Ed.Agram were all nondisabled intellectually. Nondisabled participants expressed the fear of making disabled participants feel tokenized and also the idea that some disabled members may go along with the majority of nondisabled peers’ opinions, as this is the easier option when nondisabled members are the majority.
  • Gaining Cultural Competence The attainment of cultural competence through gained experience working with people with disabilities is one covert way in which ableism worked in the group. Although cultural competence is essential for advocacy work in the realm of increasing sex education for people with disabilities, it is important to acknowledge how the ability to gain experience with people with disabilities is a form of ableism. For example, nondisabled members received benefits to participation that were not necessarily available to the disabled members, such as gaining cultural competence in working with people with disabilities for future careers. Members with disabilities could not put on a resume that they have experience working with people without disabilities and receive the same level of value by employers for such a statement.
  • Discussion
  • Key Findings Theme 1: How and what we learned Theme 2: Relationships (or lack thereof) was a major facilitator (or barrier) of the program’s success Theme 3: The tension between the program’s greatest strength and what we saw as the most critical area of growth Overall: Highlights the importance of sex education by and for individuals with disabilities that affirms their right to sexual expression
  • Limitations No members of the program who identified as having an intellectual disability were part of the analysis team (although they were part of other research activities) IRB limited some of the data we collected and who could conduct the analysis We focused on how group members brought everyone’s different ideas about sex and sex ed together into content for Instagram, not what those who viewed our content thought about our posts
  • Thank you! @includedud curtiss@udel.edu
  • References Aunos, M., & Feldman, M. A. (2002). Attitudes towards sexuality, sterilization and parenting rights of persons with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 15(4), 285-296. https://doi.org/10.1046/j.1468-3148.2002.00135.x de Wit, W., van Oorsouw, W. M., & Embregts, P. J. (2022). Sexuality, education and support for people with intellectual disabilities: A systematic review of the attitudes of support staff and relatives. Sexuality and Disability, 40, 315–346. https://doi.org/10.1007/s11195-021-09724-w Ferrante, C. A., & Oak, E. (2020). ‘No sex please!’We have been labelled intellectually disabled. Sex Education, 20(4), 383-397. https://doi.org/10.1080/14681811.2020.1719479 Gómez-López, M., Viejo, C., & Ortega-Ruiz, R. (2019). Well-being and romantic relationships: A systematic review in adolescence and emerging adulthood. International Journal of Environmental Research and Public Health, 16(13), 2415. https://doi.org/10.3390/ijerph16132415 Kempton, W., & Kahn, E. (1991). Sexuality and people with intellectual disabilities: A historical perspective. Sexuality and disability, 9(2), 93-111. https://doi.org/10.1007/BF01101735 Hacker, K. (2013). Community-based participatory research. Sage Publications. Huffman, T. (2017). Participatory/action research/CBPR. In The international encyclopedia of communication research methods (pp. 1-10). Wilely. Löfgren-Mårtenson, L. (2013). “Hip to be crip?” About crip theory, sexuality and people with intellectual disabilities. Sexuality and Disability, 31(4), 413-424. https://doi.org/10.1007/s11195-013-9287-7 McRuer, R. (2006). Crip theory: Cultural signs of queerness and disability. New York Univerisity press. Pelleboer-Gunnink, H. A., van Oorsouw, W. M., van Weeghel, J., & Embregts, P. J. (2021). Stigma research in the field of intellectual disabilities: A scoping review on the perspective of care providers. International Journal of Developmental Disabilities, 67(3), 168-187. https://doi.org/10.1080/20473869.2019.1616990 Terry, G., Hayfield, N., Clarke, V., & Braun, V. (2017). Thematic analysis. In C. Willig & W.S. Rogers (Eds.) The SAGE handbook of qualitative research in psychology, 2, 17-37. World Health Organiation. (2022). Sexual and reproductive health and research (SRH): Our vision is the attainment by all people of the highest possible level of sexual and reproductive health.

Service Models for Providing Sex Education to Individuals with Intellectual Disabilities in the United States

Curtiss, S.L. & Stoffers, M. (2023). Service models for providing sex education to individuals with intellectual disabilities in the United States. Journal of Intellectual Disabilities, Online first, https://doi.org/10.1177/17446295231164662

A preprint of the whole article is free, and the summary is below.

  • Service models for providing sex education to individuals with intellectual disabilities in the United States
  • Research Questions:What are the service delivery models that sex educators of individuals with intellectual and developmental disabilities use to provide instruction? What are the service delivery models that sex educators of individuals with intellectual and developmental disabilities use to provide instruction? What are the strengths and challenges associated with these models?
  • Comprehensive Sexuality EducationComprehensive sexuality education (CSE) emphasizes the importance of instruction that addresses the cognitive, emotional, physical, and social aspects of sexuality.Individuals with disabilities, particularly those with intellectual disabilities, are at greater risk of negative sexual health outcomes such as sexually transmitted infections and unwanted pregnancies, yet are less likely to receive sexuality education than their typically developing peers.Parents of children with intellectual disabilities report that their children do not receive sex education in school, and the parents do not feel confident to teach sexual education themselves.
  • Barriers to CSE Educator's Lack of ownership Self Efficacy A lack in self efficacy may be due to professionals limited training, uncertainty about of topics are appropriate to cover Preparedness to provide sexual educationProfessionals face difficulty providing instruction that meets the needs of those with intellectual disabilities, especially since sex education curriculum is designed for non-disabled people.Lack of organizational and institutional policies can lead to lack of consistency.Sex education is often delivered reactively in response to problematic behavior
  • Qualitative Study: This is a qualitative interview study of practicing sex educators. We used thematic analysis to develop service delivery models and composite narratives to explain the models. Thematic analysis was also used to identify challenges associated with service delivery models.
  • Service Models Using service models to identify how sex education is provided in terms of who provides it, their qualifications, how they organize their services, who funds it, and how they implement sex education, this research provides insights into how we can build capacity for greater sex education services as there are many individuals for whom this is an unmet need.
  • Disability Programs Community-based agencies offering services to support individuals with disabilities. As one component of these programs, sex education services are provided to consumers, or sometimes the agency is contracted by nearby schools or adult service organizations to provide sex education. Funding: Grants; Donors; agency funds; Medicaid
  • Small Businesses For-profit enterprises that design and potentially market sex education curricula. Schools and organizations often hire these businesses to provide sex education to individuals with disabilities.Funding: Contracts with schools and organizations; Medicaid; out-of-pocket fee; sale of curriculum; consultations and trainings
  • Universty-based Educators University faculty who either provide sex education instruction to students with disabilities in post-secondary programs or offer sex education programs to community partners and conduct. Funding: University-based funds and fees; Medicaid; research grants
  • University-based funds and fees; Medicaid; research grantsClinics that provide behavior services rooted in applied behavior analysis. Some clinic-based BCBAs focus exclusively on sex education, while others offer comprehensive behavior support that may include sex education for individuals who demonstrate this need. Funding: Medicaid or private insurance billing; out-of-pocket fee
  • Public Health Not-For-Profits Organizations that provide education and sexual health services for community members with and without disabilities.Funding: Grants (e.g., Office for Violence Against Women and Department of Health and Human Services)
  • Mental Health Therapists Clinicians who provide mental health services to clients and may support victims and perpetrators of sexual violence. Sex education may be offered as part of these services.Funding: Medicaid or private insurance billing; out-of-pocket fee
  • High School-based Educators Educators based in high school settings who support students with disabilities and provide sex education instruction to these students as part of their job.Funding: School-based funding
  • Themes of Service Models Strengths and Challenges Difficulties with the Short-term, Dropin Approach. Getting on the Same Page. Questioning Who Should Teach Sex Education
  • Difficulties with the Short-term, Dropin Approach Lack background on the educational and cumminactaion support needs of the individuals they would be reaching. Felt constraints on what they felt they could teach based on both logistical and content-related parameters of the contracting organization. Felt constraints of what theu could and could not teach at the policy level. Drop-in educators also discussed how it could be difficult to meet their learning objectives due to the time they had spent with students. Short-term educators used creative strategies to attempt to supplement instruction after their time was complete.
  • Getting on the Same Page Both short-term and long-term educators have difficulty feeling as if the are on the same page as families or adult service providers. Lack of continuity led to several obstacles Getting buy-in to provide sex education. Individuals receiving sex education but being deinied acces to avenues for prosocial sexual expression. Navigating broader bias against sex education. Difficulty being allowed to teach specific topics, and difficulties getting families to buy-in to the need for sex education. Lack of support and access to space for sexuality and sexual expression. Navigating the political climate toward sex education in their localities.
  • Questioning Who Should Teach Sex Education Educators varied in backgrounds and expertise in sex education. Little agreement between service models on the approriate level of training for educators. The American Association of Sexuality Educators, Counselors, and Therapists (AASECT) is described by many educators as the epitome of expertise. But other educators prefer a professional development certifiacte programs, which require less time and finacial resources, but this training has been questioned by other educators.
  • To conclude, this study builds an understanding of the professionals who provide sex education services to individuals with intellectual and developmental disabilities, as well as identifies the implementation strategies and funding mechanisms that professionals utilize to offer sex education. Further allowing for strengths and challenges to be identified through three major themes; Instructional Implications of the Short-term, Drop-in Approach; Getting on the Same Page; and Questioning Who Should Teach Sex Education.
  • Thank you!

Cultural Humility in Youth Work: A Duoethnography on Anti-racist, Anti-ableist Practice

Curtiss, S.L. & Perry, S.C. (2023). Cultural humility in youth work: A duoethnography on anti-racist, anti-ableist practice. International Journal of Qualitative Studies in Education, Online first, https://doi.org/10.1080/09518398.2023.2178756

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  • Cultural humility in youth work: a duoethnography on anti-racist, anti-ableist practice By Sarah L. Curtiss and S. Cole Perry. Retro lines in green, reds, and yellow
  • Research Focus In this study, we used duoethnography to theorize cultural humility as part of our own youth work practice and then explore its relevance for youth-adult partnerships in out-of-school programs. As researcher-practitioners, we considered cultural humility in our own practice and areas of work: (1) at an overnight summer camp and (2) in a social skills group for Autistic adolescents. A narrative mode helped us connect personal experiences with broader political and societal context (Frank, 2002). We propose the necessity of cultural humility for addressing power imbalances and its utility as a means of youth-practitioner engagement, using our own stories to connect to other scholars pursuing transformative social justice through youth work.
  • Duoethnography Duoethnography is an extension of autoethnography in which two people engage in reflective practice both independently and jointly. It is rooted in social constructivism and emerged from curriculum theory as a critical research method and form of practice with the purpose of understanding self in relation to curriculum broadly defined Complements cultural humility because the researcher engages in self-reflection and personal change throughout the process.This project chose to use duoethnography to deepen, problematize, reinforce, and expand our perception of and engagement without practice.
  • The Tenets of Duoethnography Currere–viewing one’s own life as a curriculum or in other wordsunpacking the meaning from one’s own experiences;Polyvocal and diologic–composed of dia-logues between researchers interacting with cultural artifacts;Disrupts metanarratives–by present-ing multiple points of view, we invite readers into the conversation rather than asserting a particular perspective;Difference–examining multiple marginalities and elucidating how the same phenomena can be viewed differently;Dialogical change and regenerative transformation–the researchers are changed through the process of doing research;Trustworthiness found in self-reflexivity, not validity and truth claims–that knowing/truth is not a fixed state, but fluid being reconstructed by both the researchers and the reader;Audience accessibility–stories that are clear and easy to read;Ethical stances–duoethnography is research that is done not on, but with the subjects and thus ethical onus is on caring for one another while giving space to the reader to find their own meaning;Trust–without trust the researchers are not able to disclose their thoughts to an extent that produce a rich and thoughtful analysis
  • Sarah's Positionality I am a White, middle-class, highly educated, heterosexual, cisgender woman. I do not identify as having a disability. Thus, I bring to my partnerships with youth the power afforded to me as an adult as well as power based on my privileges from being situated in an ableist, racist, and heteronormative societyThe group I designed was unique in that my goals were to partner with youth to foster their strengths, self-awareness, self-acceptance, self-expression, leadership, and problem-solving–not make youth seem less AutisticThe program combined didactic instruction on social topics with experiential games designed to provide practice using friendship skills. I hoped to cultivate a sense of community within the group where members could be themselves and have authentic friendships within the group I think it’s important to understand that when I’m using cultural humility, I’m thinking about Autistic people as a cultural group. Autism as cultural identity is an emerging theory in the scientific discourse and often has been central to discussions of language. Language has been centralized in the discourse of autism as a cultural identity as language shapes our reality
  • Cole's Positionality I am a White, middle-class, highly-educated, queer, genderqueer person. Ten years or so ago, the movement for Black lives was making the world pay attention as I was starting to make sense of my own commitments and identity under “imperialist white-supremacist capitalist patriarchy”My own political education over the past decade has been strengthened through organizing locally against mass incarceration and police brutality. The conscientization and relationships I develop through this work changes how I prioritize and conceptualize youth development in my career while my youth work has given me skills and a certain analysis regarding age and power. I see myself as working with (other) marginalized folk to carve out space for ourselves and challenge oppressive power structuresMy camp, for instance, served a largely White, cisgender, and wealthy population, but as in many such institutions there were significant populations of youth of color, LGBTQ þ people, and neurodiversity, while the outdoor camp setting limited access by physical ability and controlled socioeconomic diversity through a scholarship program.
  • Theme 1 Cultural Humility for Transformative Social Justice Cultural humility became a primary tool we used to extend the positive development activities to align with our own social justice agenda.Cultural humility was used to build on seemingly mundane interactions to be more just—not only for the individuals involved but also to contribute to more justice in the structures of our programs.
  • Cole's Vignette There was a group of four children playing 4-square, 3 White children and 1 Black child. A Black child skillfully hit the ball into a corner of another square, meaning he would advance to the next position. The White children clamored about how the ball was out of bounds, and the counselor referee hesitantly called the Black child out. Cole commented on the racial contours of the situation and the counselor quickly interjected to overrule the erroneous call. Over the past few years Cole has developed skills to spot and understand the workings of Whiteness and how it limits the positiveness of BIPOC experiences at camp. Cole is grateful to have been able to exercise reflexiveness collaboratively with someone who intervened purposefully and immediately. Our mutual follow up to this instance was to (1) let the counselor know why we had contested the kids loud and wrong determination and (2) to follow up with the Black child throughout the week, to ensure he was forming connections such that e would enjoy his time at camp
  • Sarah's Vignette Most social skills programs for Autistic youth use didactic strategies to teach social concepts to address core impairments associated with autism, but these strategies can leave youth feeling demoralized.One youth came to our group and loudly said to Sarah, "Why do I need a social skills group? The rest of my school needs a social skills group!" He had recognized the inequality in being targeted to be more amiable to his peers. To validate his feelings, Sarah told him he was right and that other kids at his school should have social skill group. Sarah then asked the rest of the group if being listened to was important to them, and they all said yes. Sarah told the upset youth that the group was focusing on being listened to in the group today, and he returned.In our group, we affirmed and supported youth taking initiative, encouraged their creativity, provided opportunities for leadership, and expected kindness—not through ameliorating impairments, but rather, through fostering their strengths.
  • Theme 2: Cultural Humility and Youth-practitioner PartnershipsCultural humility is centered on the power of authentic relationships to begin to address inequalities.Reflective practice is necessary to understand how social inequalities reverberate through personal relationships and can be exacerbated by professional roles in those relationships.
  • Sarah's Vignette The program consisted of Sarah and a small group of undergraduate students. since it was most of the students first time working directly with Autistic youth, Sarah designed their training to disrupt their assumptions about autism.The students had been taught about autism through a deficit framework, so Sarah taught them how impairments interact with societal norms and structures to create disabling conditions.Sarah used the metaphor of international travel to help introduce this concept. The group watched clips of travelers getting confused by different cultural norms. Then they would discuss the similarities for kids on the spectrum As a facilitator Sarah does teach some social rules but prioritizes providing ma space where youth could have a reprieve from all the pressure they had to conform.
  • Cole's Vignette As part of the camps administrative team, Cole trains and prepares counselors, as well as intervening in the interpersonal crises of the campers. Cole regularly initiates conversations, trainings, and interventions regarding race, gender and sexuality, through this he has found that more marginalized people spoek with him about the oppression found at camp.At one of the camp's diversity trainings, Tara, a Black counselor, commented "There's a lot of White People here", which was a bold statement because the camp has been historically a predominantly White camp. Cole followed up with Tara after that, and it started a friendship that allows both Cole and Tara to discuss experiences and situations regarding race and justice, and for the two to consult and advise each other in challenging situations. Eventually the two were able to work together to address inequality as it ranged from the kid's interpersonal experiences to structural barriers in the camp's administrative policies.
  • Theme 3: Cultural Humility and Engaging Around InequalitiesCultural humility guided how we planned and designed programming as well as how we cultivated meaningful relationships.It also provided us with an avenue for directly engaging with youth around issues of race, sexuality, class, and disability–or, through reflective practice, how we could grow in our own youth development work.
  • Cole's Vignette Cole once overheard a group of 13-year-olds calling a Puerto Rican peer "El Salvador". Cole stepped in asking " Why are you calling him that?" and before he could go any further, a different White person said "Yeah! That's racist." The offenders stopped and dropped the nickname for the rest of the session.Cole wishes that he had done more to follow up to help the youth repair the racist harm, or to make sure the positive relationships and experiences outweighed that incident.Many instances have resembled this one, where any slight disruption to the status quo opened space for others to join a conversation.Cole uses this scenario in staff trainings as a fodder for counselors to imagine how they would respond and to scrutinize racializing nicknames more generally.
  • Sarah's Vignette Not all of the members of Sarah's group knew that they had been diagnosed with autism, and one day one of the group members brought an autism pride banner that she had made, and wanted to start hanging it on the door during meetings. Sarah verbally performed being positive and supportive of the banner, and used her position of trust to minimize its impact. Sarah was uncertain how to talk to the kids about disclosure, especially since not all of the kids knew they were on the spectrum.Sarah believes that it was not only an opportunity missed, but she left the children who were unaware of their diagnosis in the dark The group's silence on autism muted a lens that could help the youth make sense of their experience. Sarah reflects on a moment where shame is operating on two levelsWielding power in such a way that may encourage shame regarding autistic identitySarah's reflective practice, guided by cultural humility helped her to understand her own shame and unpack the layers of embedded ableism so she could act differently in the future.
  • Discussion Through analysis, Sarah and Cole outlined how cultural humility provided a framework by which they could align their youth development programs with transformative social justice, develop authentic youth practitioner partnerships that acknowledge social inequalities, and engage with inequalities that we see being perpetuated in youth programs. This is consistent with how cultural humility has been theorized to be implemented in an educational settings and youth programs. However, unlike previous research, which largely theorizes the benefits of cultural humility , our duoethnography details the lived experience of trying to implement cultural humility, but also using reflective practice informed by cultural humility. It was a useful framework , but there were times when power imbalances were not adequately addressed and thus maintained. Having acknowledged that, the continuous process of self reflection guided by cultural humility made us better at identifying and addressing power imbalances inherent to youth-practitioner relationship
  • Conclusion In this paper, Sarah and Cole trace three ways through duoethnographic methods that cultural humility has guided their personal and professional growth. In order to change both ourselves and our programs, cultural humility led them to a transformative social justice approach. On the basis of critique and reflection, they sought to enact structural changes that made inequality more difficult in their programs. Explicitly addressing matters of oppression such as race and disability strengthened their relationships with youth and led to productive collaborations with youth workers.

A Dialectic of Control and Acceptance: Mealtimes with Children on the Autism Spectrum

Curtiss, S.L. & Ebata, A. (2021). A dialectic of control and acceptance: Mealtimes with children on the autism spectrum. Appetite, Online first. https://doi.org/10.1016/j.appet.2021.105327

A preprint of the whole article is for free, and the summary is below.

Disseminating Resources Online for Teaching Sex Education to People with Developmental Disabilities

Curtiss, S.L. & Stoffers, M. (2021). The birds and the bees: Disseminating resources online for teaching sex education to people with developmental disabilities. Sexuality and Disability, Online first. https://doi.org/10.1007/s11195-021-09703-1    

A preprint of the whole article is free, and the summary is below.

  • Disseminating Resources Online for Teaching Sex Education to People with Developmental Disabilities By Sarah Curtiss and Melissa Stoffers
  • Comprehensive Sex Education: Comprehensive sexuality education (CSE) provides evidence-based, developmentally appropriate and accurate information about cognitive, emotional, physical and social aspects of sexuality. Although adolescents with developmental disabilities are considered to be among the most vulnerable populations, they are frequently excluded from or have limited access to CSE.
  • Dissemination: There appears to be a disconnect between sex education research and the practical implementation of sex education by educators and parents. To reach educators and parents, researchers must consider barriers to access and disseminate resources and information in a way that is practical and convenient to the intended audience such as the internet.
  • asdsexed.org: Asdsexed.org is a website dedicated to disseminating information about how to teach human sexuality to people with developmental disabilities such as autism and intellectual disabilities. The objectives of this study were to examine efforts to disseminate information on how to teach sex education to people with developmental disabilities.
  • Methods. Analytic Data: Analytic data is anonymous and comes from code that is embedded into websites. The code tracks what visitors do while on the website, such as which pages they view, links that they click and time spent on each page. Descriptive Analysis: Asdsexed.org is hosted by WordPress which provides analytic data through a company called Jetpack. Jetpack provides raw numbers that were calculated into percentages for referral sources, content viewed and engagement.
  • Results: Referral Sources. Search Engines: In exploring the remaining referrals, social media sites were the next highest: Facebook (n = 963, 33.39%), Pinterest (n = 588, 20.39%), WordPress (n = 246, 8.53%), Tumblr (n = 146, 5.06%) and Twitter (n = 68, 2.36%). Direct Links: There were 28,724 visitors to the website. The vast majority of referrals (89.96%) came from search engines (n = 25,840). Social Media: Although the majority of the direct links individually accounted for less than 1% of the remaining referrals, there were some that were frequent referrers.
  • Top Search Terms & Content Viewed: The majority of traffic captured by search terms was searching for a variation on the term body parts (n = 800, 36.97%). Other search terms used to access the website were variations on relationship levels pyramid (n = 173, 7.99%), masturbation training (n = 121, 5.59%), social stories (n = 113, 5.22%) and sexuality circles (n = 93, 4.30%). Autism was only used in search terms eight times (1.62%) and some form of the word disability was used 20 times (4.01%). There have been 44,280 views of unique content pages on asdsexed.org. The top views were of The Birds and the Bees lesson plans which were original lesson plans for teaching sex education to youth on the autism spectrum (n = 16,166, 36.51%); Privacy Socal Stories which was a review of the website “Living Well with Autism” (n = 8,024, 18.12%); The Circles of Sexuality which was a review of a framework for understanding human sexuality (n = 2,491, 5.63%); Relationship Pyramid which was a visual support for explaining relationships developed at The Autism Program Affiliate at the University of Illinois (n = 2,136, 4.82%); Explaining Anatomy which was original content that explained reproductive anatomy in plain language (n = 2,037, 4.60%); Masturbation Training which was a review of a masturbation training program (n = 767, 1.73%)
  • Engagement: Links Clicked: There were 6,676 clicks to external content; however, this was widely distributed over many links (n = 177). Some of the top links were Living Well with Autism, The Birds and the Bees Tumblr Site, Advocates for Youth, Vanderbilt's Healthy Body's Toolkit, Circles of SExuality, and How Cast How to Manage a Crush.
  • Discussion: Key Points. Feasibility: The technological features used in the website asdsexed.org require no programming skills and cost approximately $100 annually to maintain. It still requires a considerable degree of time to build and update. Dissemination: Sex education experts should plan their dissemination around internet searches and face-to-face communication about the website, for example, by talking about the website during trainings and public engagement.
  • Pinterest: For asdsexed.org, Pinterest was an important referer, especially considering referrals per post. This may be because all Pinterest referrals link back to asdsexed.org. The effectiveness of Pinterest is consistent with previous research that has found educators to use Pinterest to find resources. Resources: The majority of visitors to the site viewed the original lesson plans developed by asdsexed.org called “The Birds and the Bees” series. Visual teaching supports and social narratives were also among the top viewed content. This is consistent with previous research that suggests that educators look for information online to meet a specific need.
  • Thank you! Contact Sarah Curtiss at curtiss@udel.edu for more information

Autistic Young Adults’, Parents’, and Practitioners’ Expectations of the Transition to Adulthood

Curtiss SL, Lee GK, Chun J, Lee H, Kuo HJ, & Ami-Narh D. (2020). Autistic Young Adults’, Parents’, and Practitioners’ Expectations of the Transition to Adulthood.  Career Development and Transition for Exceptional Individuals, Online First. https://doi.org/10.1177/2165143420967662

A preprint of the whole article is free, and the summary is below.

  • A young man smiling and wearing a striped blue t-shirt.
  • A young man wearing a blue shirt and writing on a notebook. He is sitting and on the the table in front of him there is tea cup and a tablet.
  • A young woman standing in front of shelves that are filled with books. She is wearing a brown shirt and a dark blue one shoulder bag.
  • Three circles: in the first circle there is a man and a woman standing next to each other both dressed in black, there are 2 arms in the forefront of the image. In the second circle there are a young woman and a man setting down and in front of them on the table there are papers, notebook, pens, pencils, and a coffee mug. The young man is wearing a light green t-shirt and he is holdng a paper in his hands and looking at it. The young woman is wearing light purple jacket and a gray t-shirt, she has her left arm placed on the young man's shoulder. In the third circle, there is a young man smiling and wearing a light yellow t-shirt.
  • Four boxes: In the first box there is a wall that says "5 Michigan State University." In the second box there is a woman typing on a laptop, a brown table, a notebook, a pencil, a coffee cup, an image of a folder icon, video icon, music icon, mail icon, and a shopping cart icon. On the image there are mutable light white circles, that have a person figure, creating webs. In the third box there is one woman and three men setting around a white table, all are holding notebooks and smiling. On the table there is a paper, 2 notebooks, and a pen. In the fourth box there is a laptop, a note book, a pen, and tow hands typing on the laptop.
  • A young man, the man has headphones on and wearing a scarf around the nick and a red jacket.
  • An old man setting in front of a house. The man is wearing glasses, a white t-shirt, and a drack blue jacket. The man has a white beard and white hair.
  • A young woman wearing glasses, and black jacket an drack grey shirt. The woman is writing in a notebook using a pen.
  • 2 women sitting facing each other and chatting. One woman is wearing a white sweater, and the other woman is wearing a blue shirt and has a laptop in front of her.
  • A young woman standing holding a black folder. She is wearing a grey blazer and a striped shirt.
  • A young woman in a graduation black cap and gown smiling.
  • A young man wearing a red shirt and putting his hand on top of his nose. A young woman wearing a white t-shirt and a blue jacket leaning toward the man and placing her hand on his shoulder.

Understanding the Risk of Sexual Abuse for Adults with Intellectual and Developmental Disabilities from an Ecological Framework

Curtiss, S. L., & Kammes, R. (2020). Understanding the Risk of Sexual Abuse for Adults With Intellectual and Developmental Disabilities from an Ecological Framework.  Journal of Policy and Practice in Intellectual Disabilities,  17(1), 13-20. https://doi.org/10.1111/jppi.12318

A preprint of the whole article is free, and the summary is below.

  • A young man wearing a red shirt and putting his hand on top of his nose. A young woman wearing a white t-shirt and a blue jacket leaning toward the man and placing her hand on his shoulder.
  • An image of a magnifying glass.
  • A graph that consists of 5 circles inside each other, 3 long 2 way arrows: the first top arrow connects the first outer circle to the last inner one, the remaining bottom 2 arrows connect the box surrounding the first circle to the fifth one. Surrounding the bottom of the circle there is half box that reads: Chronosystem: Sociocultural events and life course transitions. Around the circle there are 3 boxes: the top box on the right has the word actions, the top box one the lift has the word risks, the last box at the bottom reads system level. The first circle (outer circle) reads the following: Macrosystem: Broader culture, Stigmatization of sexual expression, Cultural values that condone sexual violence. The second circle inside the first one reads: Exosystem: Cultural institutions, social structures, policies. Then, Statewide coordinated effort, Precluding the employment of sexual perpetrators, Functional surveillance & regestry system, Inadequate legal protection, Lack of comprehensive investigatory systems. The third circle reads: Mesosystem: connections, that is followed by 8 short 2 ways arrows that go all around the third circle. The fourth circle reads: Microsystem: Direct Settings, safety planning, Developing the direct care workforce, Avenues for consensual sexual expression, Lack of comprehansive sex education, sexual perpetrators present. the fifth and last circle reads: Individual: Genes, personal history, & characteristics, Resilience, learned helplessness.
  • An image of a little girl with hands on her head.
  • An image of a little boy setting on the floor with his arms and legs crossed, and his back to a wall. He is wearing a white t-shirt and blue jeans.
  • A young girl holding her hands up protecting her head. She is wearing a white shirt and black pants.
  • A young boy holding a light brown teddy bear, wearing a white shirt and blue pants. The boy has an upset look.

Integrating Family Ritual and Sociocultural Theories as a Framework for Understanding Mealtimes of Families With Children on the Autism Spectrum

Curtiss, S. L. (2018). Integrating family ritual and sociocultural theories as a framework for understanding mealtimes of families with children on the autism spectrum.  Journal of Family Theory & Review,  10(4), 749-764. https://doi.org/10.1111/jftr.12298

A preprint of the whole article is free, and the summary is below.

  • A mother with her 2 young children preparing a meal in the kitchen.
  • A graph with 10 boxes and 2 arrows. The 2 top boxes: Parents as a Human Mediator for the Mealtime Ritual, Mealtime Ritual as a Symbolic Mediator. The three boxes bellow that: From family Ritual Family, Routine Enactment of Activity, that is followed by an arrow that has the word Repetition and connecting the previous box to the next one, Ritualistic Meaning: Cohesion & Identity. A thin arrow connects the previous box to the one bellow it that says: Psychosocial Tool. This box is connected by an arrow to the box next to it, the arrow says: Internalization. The next box says Mediated Activity, and this box is connected to the box on top of it by a thin arrow. The box next to it says: From Sociocultural Theory. The last set of boxes bellow say: External, Internal.
  • An image of a male adult wearing a black jacket, smiling and standing behind a young male who is also smiling and is wearing a red shirt.
  • A young boy wearing a gray jacket and a young girl wearing a blue jacket. Both of them are playing with fidget spinners.
  • An adult male wearing a gray t-shirt is smiling and looking at a young girl eating, she is wearing a purple shirt.
  • A young boy wearing an orange jacket and had black headphone on.
  • 2 young girls sitting and drinking milk. One is wearing a black shirt and the other is wearing a red shirt.
  • a male adult wearing a light orange shirt smiling and looking at a young boy eating spaghetti.
  • a male adult eating and looking at a young boy. The young boy has tongs in his hand. There is also an adult female helping a young girl with her food. all four individuals are around a dining table.

The Nature of Family Meals: A New Vision of Families of Children with Autism

Curtiss, S.L. & Ebata, A.T. (2019). The nature of family meals: A new vision of families of children with autism.   Journal of Autism and Developmental Disorders, 49(2), 441-452. https://doi.org/10.1007/s10803-018-3720-9

A preprint of the whole article is free, and the summary is below.

  • A background Image:

Bringing Instructional Strategies Home: Reaching Families Online

Curtiss, S.L., Pearson, J.N., Akamoglu, Y., Wolowiet-Fisher, K., Snodgrass, M.R., Meyer, L.E., Meadan, H., & Halle, J.W. (2016). Bringing instructional strategies home: Researching families online. Teaching Exceptional Children, 48(3), 159 – 167.   https://doi.org/10.1177/0040059915605816     

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Understanding Provider Attitudes Regarding Father Involvement in Early Intervention

Curtiss, S.L., McBride, B.A., Uchima, K.,Laxman, D. J., Santos, R. M., Weglarz-Ward, J., & Kern, J. (2021). Understanding provider perspectives: Father involvement in early intervention. Topics in Early Childhood Special Education, 41(2), 147–159. https://doi.org/10.1177/0271121419844829  

A preprint of the whole article is free, and the summary is below.

  • Understanding Provider Attitudes Regarding Father Involvement in Early Intervention Sarah L. Curtiss, Brent A. McBride, Kelly Uchima, Dan J. Laxman, Rosa M. Santos, Jenna Weglarz-Ward, and Justin Kern,
  • Introduction: Families have an important role in early intervention (EI). Family-centered EI is a philosophy that puts the family at the center of the child’s learning environment; thus the family is integral to the EI process. Despite the importance of family-centered services, many components of service delivery continue to not involve the parents. As such, parents are not always the primary decision-makers in their children’s care.
  • Importance of Father Involvement: Father involvement with young children has a positive impact on early learning outcomes, it improved language and cognitive development, and has a positive impact on peer relationships. Father involvement may prevent negative outcomes such as challenging behaviors and emotional difficulties. Unfortunately, the current father involvement policy efforts and the establishment of family-centered practices do not seem to have increased the participation of father involvement in EI.
  • Fathering practices vary by culture and the United States has a heterogeneous cultural environment marked by economic stratification, an urban-rural divide, a variety of religious traditions, immigrant populations, and a racially and ethnically diverse population.
  • Our Research: There has been no systematic evaluation of providers’ thoughts regarding how to increase father involvement. Their input would be valuable as practitioners are the ones who are directly responsible for building partnerships with fathers. Our study focuses on understanding the attitudes of providers regarding father involvement in EI.
  • we posed the following questions: 1: In what ways do providers value father involvement and consider how EI could be enhanced through father participation in services? 2: How do providers think they could increase father involvement if, in fact, they think they are capable of engaging fathers? 3: What is the role of culture on providers’ philosophies and practices regarding father involvement in EI?
  • The Impact of Increased Father Involvement in EI: Data showed three major themes when it came to increasing father involvement from the providores perspective: more father involvement is better, it affects the entire family, and dads make a difference.
  • Image Showing the Impact of Increased Father Involvement: More is Better (There are more people involved with fathers are involved which is good for the child: Enhanced child outcomes due to father child success, more opportunities, and greater carryover), Affects the Entire Family (Impact to family unit as a whole, specific dyads, or other members of the family: Enriched father-child bond, father empowerment, strengthened marital partnership, support for mom, benefits the family, negative or varied impact)), and How Dads make a Difference (The ways in which child and family outcomes are enhanced through father involvement: father's unique influence, learning about EI, Balanced Approach, Insights for Providers, Getting on the Same Page, and Better Service Planning).
  • Understanding Provider Philosophies: The Impact of Father Involvement in EI: Providers identified many benefits to fathers being involved in EI. Providers believed that father involvement in EI would enhance the child outcomes, and it would benefit the whole family. Providers identified the specific ways in which father involvement can have a positive impact on the child outcomes; for example, providing insights to everyone so the family is on the same page. Providers expressed that since increased father involvement provides further support for the mother, it will also strengthen the marital partnership.
  • How to Increase Father Involvement in EI: The second research question asks how do providers think they could increase father involvement. Three themes were highlighted: it is not in my hands, a systems-level approach, and direct intervention by providers.
  • It's not in my hands: responses that indicate increasing father involvement is not the responsibility of providers (Can't or don't know, access, step up, be present). A systems level approach: proactive responses to getting fathers involved that are not initiated by the provider (equal involvement, mother as the middleman, father-centered programs, professional development, policy initiatives). Direct intervention by providers: the ways in which child and family outcomes (building partnerships, alternatives to face-to-face, different hours).
  • Understanding Provider Practices: How to Increase Father Involvement in EI: With regard to increasing father involvement in EI, responses suggested that providers should vary the hours of their offered services in order to meet the fathers' schedules. Parents have reported that it is important for providers to consider the family needs when scheduling interventions, and fit therapy into family routines.From our data, it is unclear the degree to which cultural or gendered connotations influenced the ways in which providers understood increasing father involvement.
  • The Role of Culture: When it came to culture and how does it influence the providers’ philosophies and practices regarding father involvement, four themes were highlighted: family culture is not a major factor, culture is a barrier to father involvement, culture facilitates father involvement, and the role of culture is ambiguous.
  • Family Culture is not a major factor: not culture, provider culture, who works. Culture is a barrier to father involvement: absent fathers, understanding disability or EI, traditional gender roles, not dad's job, mom's role. Culture facilitates father involvement: dad's involved, hands-off involvement. The role of culture is ambiguous: do not know, it depends or some role, big role, cultural norms.
  • How Culture Is Reflected in Provider Philosophies and Practices: Through the cultural lens, providers were able to see multiple dimensions of father involvement beyond direct involvement during sessions. Participants in our study focused on how culture affects gender roles.
  • In order to increase father involvement providers need to build partnerships with fathers: to communicate, engage, build relationships, and facilitate understanding of EI.
  • Thank you for learning about our study! If you have any questions, feel free to email Sarah Curtiss at curtiss@udel.edu.

The Birds and the Bees: Teaching Comprehensive Human Sexuality Education

Curtiss, S.L. (2018). The birds and the bees: Teaching comprehensive human sexuality education. Teaching Exceptional Children, 51(2), 134-143. https://doi.org/10.1177/0040059918794029

A preprint of the whole article is free, and the summary is below.

  • The Birds and the Bees: Teaching Comprehensive Human Sexuality Education by Sarah L. Curtiss
  • History of Sexual Education: The US has a long, complicated history with sex education There is a movement both nationally & internationally to define sex education comprehensively Comprehensive sexuality education helps individuals to acquire accurate information about sexual and reproductive health, explore and nurture positive values and attitudes toward their sexual and reproductive health develop life skills that encourage sexual health and safety
  • Barriers to Sexuality Education: There are significant barriers to individuals with IDD receiving comprehensive sexuality education Although all sates are involved at some level in providing sex education to public school children, youth with IDD are often precluded from receiving comprehensive sexuality education Special education teachers may not feel they are qualified to teach comprehensive sexuality education Special educators may have difficulty obtaining appropriate resources that are empirically supported and aligned with educational standards for teaching sex education In the absence of adequate training and resources, misconceptions about human sexuality and IDD persist
  • Implications: There are several implications associated with poor or no sexuality education. Without adequate resources and training, when sex education is provided, personal values may dictate the information presented to individuals with IDD A lack of intentional, accurate messages about sexuality can communicate that the sexual expression of individuals with IDD is deviant When individuals with IDD are not supported proactively with sexual expression, it can lead to problematic sexual behavior Individuals with IDD are at risk for sexual violence, manipulation, and coercion, and education can be a powerful self-protective tool
  • Stages for implementing a comprehensive sexuality education curriculum: a. Connect with school boards and district personnel b. Connect with school administrators c. Plan for instruction with general education teachers d. Engage families and caregivers in planning, and e. Engage students in planning and instruction
  • Dimensions of Human Sexuality Instruction: Providing Information (formal lessons on sexuality topics—Make the implicit explicit), Sending Signals (Informal messages that communicate values—make the unintentional intentional), Teaching skills (Intentional strategies that promote pro-social and reduce problematic sexual behavior—make the indirect direct). Goals for healthy sexual development throughout the lifespan: Early Childhood—explore, middle childhood—understand boundaries, adolescence—cope with changes, adulthood—live your story.
  • Goals for healthy sexual development throughout the life span: In early childhood, the goal of healthy sexual development is that children are allowed to explore developmentally appropriate information about sexuality safely. This includes their attitudes, values and beliefs, relationships, and interpersonal skills Adolescents must learn to cope with changes to continue on the path toward being a sexually responsible adult In adulthood, people with IDD live their story: They safely express their sexuality, whatever that may mean for them The goals are additive; exploring, understanding, and coping never stop as adults express their sexuality congruent with their values. Regardless of the age of the child, there are three dimensions of human sexuality instruction that special educators can use to support the development of healthy sexuality for their students: a. Providing information b. Sending messages, c. Teaching skills
  • The language used to express sexual information is often vague and relies on implicit deductions... [this] makes learning about human sexuality difficult for all students but especially those with IDD.
  • Selecting Content: SIECUS (2004) provides guidelines that are available online and cover 39 different topics, which fall under six broad concepts: human development, relationships, personal skills, sexual behavior, sexual health, and society and culture Special educators can use the developmental progression of information for each topic to help target their instruction to meet individual developmental needs. There is no sexuality topic that is inherently inappropriate for individuals with IDD; however, information must be truthful, direct, and relevant.
  • Strategies: Many of the strategies special educators use to effectively differentiate in other academic contexts can be applied to comprehensive sexuality education The following strategies have been reported in studies that found increases in sexual knowledge: The use of anatomically detailed dolls and drawings Individualized instruction Prolonged engagement Direct instruction design Many of the strategies special educators use to effectively differentiate in other academic contexts can be applied to comprehensive sexuality education The following strategies have been reported in studies that found increases in sexual knowledge: The use of anatomically detailed dolls and drawings Individualized instruction Prolonged engagement Direct instruction design
  • Check-list that shows changes that happen during puberty and corresponding pictures
  • Sending signals: Informal messages that communicate values. Although providing information through formal lessons is an important aspect of comprehensive human sexuality education, most of the messages sent about human sexuality are informal. Facial expressions, wording, tone, what is talked about, and what is not talked about all teach human sexuality. Informal communication can be used as an instructional tool by making the unintentional intentional to affirm sexual expression. It is important to use informal communication intentionally to normalize and validate sexual thoughts and feelings. Educators have to stay calm when dealing with sexual expression.
  • How language communicates sexual values. Early childhood: Explore. Young child finds her vulva when using the restroom. Response that communicates shame: "that's yucky. don't touch." Response that communicates affirmation. "That's your vulva. It's special.
  • Teaching Skills: Intentional strategies that promote prosocial and reduce problematic sexual behavior. Youth with IDD need to be taught skills that promote prosocial (e.g., flirting, dating, consent) and reduce problematic (e.g., stalking, staring, harassing) sexual behavior. Teaching skills refers to how educators use routines, intervention strategies, reinforcement, practice, and environmental changes to affect behavior. A stage-based behavior change model can help educators understand how to match an instructional strategy based on the needs of the individuals and make the indirect direct There are five stages of behavior change: precontemplation, contemplation, preparation, action, and maintenance. When an instructional strategy is ineffective, it is often because there is a mismatch between the strategy and the individual’s stage of behavior change.
  • Strategies for safety planning, Name the full range of emotions and give permission to express them (e.g., “It is okay to be sad. I am here with you.”). Practice consent (e.g., ask before you touch a child). Set up opportunities for children to say “no.” Respond to peer-based harassment.
  • Using comprehensive sexuality education to promote sexual safety. Due to impairments related to communication and social isolation, children with disabilities are at greater risk for victimization Sexual perpetrators rely on a culture of shame, guilt, and secrecy around sexuality in order to prevent disclosure. Youth with IDD have additional barriers to disclosure, such as a reliance on caregivers and a lack of sexual knowledge Formal lessons that give information about the names of body parts, sexual rights, and physical intimacy are important for promoting sexual safety. By intentionally sending the message that it is safe to talk about topics of sexuality, the stage is set for disclosure. A safety plan includes: a. deciding who they can call for help b. making sure they have the phone number available c. practicing the call
  • Conclusion: From early childhood through adulthood, special educators play an essential role in the healthy sexual development of individuals with IDD. Human sexuality instruction is multidimensional and encompasses providing information, sending signals, and teaching skills. Formal lessons on sexuality topics make the implicit assumptions regarding human sexuality explicit.

Building Capacity to Deliver Sex Education to Individuals with Autism

Curtiss, S.L., & Ebata, A.T. (2016). Building capacity to deliver sex education to individuals with autism. Sexuality and Disability, 34, 27-47. https://doi.org/10.1007/s11195-016-9429-9

A preprint of the whole article is available for free.