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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

Contact us to access this article, or check out the summary below.

  • 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

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  • 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

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  • 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

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  • 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

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  • 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 

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  • 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

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  • 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

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