Sexuality and Disability (2022) 40:503–517

https://doi.org/10.1007/s11195-022-09743-1

ORIGINAL PAPER

The development of a social-sexual education program for

adults with neurodevelopmental disabilities: starting the
discussion

Kathryn Pedgrift1 · Nicole Sparapani2

Accepted: 18 May 2022 / Published online: 6 July 2022

© The Author(s) 2022

Abstract
People with neurodevelopmental disabilities, including intellectual disabilities and autism,
want to have relationships but few are given the tools and opportunity to create those rela-
tionships in a safe and meaningful way. This strong desire to have relationships, coupled
with reduced access to information, puts people with neurodevelopmental disabilities at
high risk for being targets of sexual abuse and exploitation, as well as demonstrating
social-sexual behavior that is unexpected or offensive to others. Research has long dem-
onstrated that people with intellectual disabilities are sexually assaulted at much higher
rates than the general population. In addition, it is common for people with intellectual
disabilities and autism to miss out on employment, housing, and social opportunities due
to unexpected social-sexual behaviors. To address this need, the research team developed
the social-sexual education (SSE) program to teach people with neurodevelopmental dis-
abilities how to create safe and meaningful relationships while also giving them informa-
tion about sexual abuse and coercion. We recruited licensed professionals to pilot test the
SSE program, and then we evaluated the tool using quantitative and qualitative methods.
Our findings provide preliminary support for the SSE program. Implications and future
directions are discussed.

Keywords Neurodevelopmental disabilities · Intellectual disabilities · Autism ·

Relationships · Sexuality · Social-sexual education, United States

People with neurodevelopmental disabilities, including intellectual disabilities and autism

spectrum disorder (autism) are sexually assaulted and exploited at grossly higher rates than
their neurotypical peers (Brown-Lavoie et al. 2014; Sevlever et al. 2013). Although people

Nicole Sparapani
njsparapani@ucdavis.edu
1
North Bay Regional Center, Napa, United States
2
Davis, School of Education and the MIND Institute, University of California, 95616 Davis,
CA, United States

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504 Sexuality and Disability (2022) 40:503–517

with neurodevelopmental disabilities want to have relationships, few are given the tools
and opportunity to create those relationships in a safe and meaningful way. Research has
consistently suggested that people with intellectual disabilities are at a greater risk of being
targets of sexual abuse than the general public—in both childhood (Jones et al., 2012) and
adulthood (Hughes et al., 2012). Shakeshaft (2004) estimated that students with intellec-
tual disabilities experienced sexual abuse three times more frequently than their neurotypi-
cal peers. Sullivan and Knutson (2000) found that people with intellectual disabilities had
records of sexual abuse four times more than their neurotypical peers. To date, the literature
is unclear whether children with autism are sexually abused at disproportionately high rates
(Sullivan and Knutson 2000). That clearly changes, however, when people with autism
become adults. The research literature is quite clear that adults with autism are sexually
abused and exploited at much higher rates than their neurotypical peers (Brown-Lavoie et
al. 2014). In fact, people with both autism and intellectual disabilities maintain an extraordi-
nary vulnerability to sexual abuse and exploitation throughout their adulthood. When inter-
viewed, 64% of adult females and 50% of adult males with intellectual disabilities report
being targets of sexual exploitation (Zemp 2002). National Public Radio (NPR) completed
a yearlong investigation in 2018 and found that adults with intellectual disabilities are sexu-
ally assaulted seven times more often than adults without intellectual disabilities; Females
with intellectual disabilities are sexually assaulted 12 times more often. They called it the
“Sexual Assault Epidemic No One Talks About.”
The literature suggests that people with neurodevelopmental disabilities are more likely
to experience sexual assault due, in part, to limited access to effective interventions as well
as disability-related barriers (i.e., lack of control over decisions, limited communication
skills) that could potentially be minimized with targeted instruction (Hughes et al. 2020).
Although people with neurodevelopmental disabilities develop sexual desires and interests
in relationships much like their neurotypical peers, they are often excluded from main-
stream education that address sexual health and social development (Cheak-Zamora et al.,
2019). It has long been acknowledged that people with neurodevelopmental disabilities
have unique needs that include learning differences, social inexperience, and social naiveté
that could lead to vulnerability, and warrant education programs that address these unique
needs. Such programs have been developed, yet most have targeted only basic knowledge
of sexuality and safety skills (Sala et al. 2019) for young adults (e.g., Sevlever et al., 2014).
Nevertheless, these programs are not widely accessible, may have costs that exceed local
budgets, and do not appear to be in actual hands of providers who serve people with neuro-
developmental disabilities (Thompson et al. 2014).
Unfortunately, when people are not provided with accurate and accessible informa-
tion about social-sexual behavioral norms, they are at risk for demonstrating unexpected
social-sexual behavior. Many behaviors that are legal sex crimes are commonly reported
as behavioral challenges by staff who support people with neurodevelopmental disabilities
(McConkey and Ryan 2001). Behaviors including public masturbation, touching people’s
private body parts without permission, and interacting in a sexually inappropriate manner
with children are common behaviors reported by social service staff who work with people
who have neurodevelopmental disabilities. Unfortunately, service providers report a lack
of adequate support to handle serious sexual behavior problems with confidence (Ward
et al. 2001). A lack of professional expertise and a lack of accessible education programs
are severe service gaps for social service providers. Due to this lack of support, people

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with neurodevelopmental disabilities who exhibit sexual behavior problems are routinely
referred to highly restrictive living arrangements and excluded from participation in the
community (Sevlever et al., 2014). In fact, sexual behavioral concerns may be the leading
reason that people with neurodevelopmental disabilities are less able to maintain employ-
ment or live independently, and they are more likely to become involved in the criminal
justice system (Allely & Creaby-attwood, 2016; Quinlan 1992; Reitman et al. 1999). These
phenomena likely contribute to the high rates of depression and anxiety observed in people
with neurodevelopmental disabilities (Hollocks et al. 2019; Maiano et al. 2018). They also
leave people vulnerable to isolation, feelings of hopelessness, and an inability to access
meaningful relationships.

Targeted Interventions

The current evidence base centered on targeted interventions for preventing violence against
people with neurodevelopmental disabilities is limited but growing. Until recently, the lim-
ited number of available interventions primarily included small, homogeneous samples,
often limited to females with intellectual disabilities (Hickson et al. 2015; Hughes et al.
2010; Lund 2011). Program feasibility, accessibility, cultural sensitivity and quality were
rated low across studies (Mikton et al., 2104). Mikton and colleagues (2014), for example,
synthesized the literature in order to identify and evaluate the effectiveness of interventions
developed to help prevent violence against people with disabilities. The search found only
eight relevant studies, none of which were judged to be high quality or effective.
Recent studies have begun to address these limitations by utilizing experimental designs
to improve rigor, community-based approaches to ensure inclusion, and internet-based
modules to improve program feasibility and accessibility (Hickson et al. 2015; Lund et al.
2015). Studies have also included women and men with neurodevelopmental disabilities
more broadly (Hickson et al. 2015). Hickson and colleagues (2015), for example, developed
and empirically tested the ESCAPE-DD curriculum, an abuse prevention program targeting
self-protective decision making for women and men with intellectual and developmental
disabilities. Furthermore, Hughes and colleagues developed and tested the feasibility of
The Safely Class, an interactive comprehensive curriculum targeting interpersonal violence
prevention against people of all genders with intellectual disabilities. The authors utilized
a participatory design, working in partnership with the intellectual disability community to
improve inclusion and accessibility of the program. They also developed the program to
address and align with the needs of the intellectual disability community (i.e., repetition of
key topics, use of pictures).
This emerging literature base is promising overall, as it addresses many of the previous
limitations within the field and highlights the importance of including the community when
designing educational programs for the community. Future work extending on this body of
literature is needed to ensure that people of all genders and with a range of neurodevelop-
mental disabilities have access to high quality, effective education and prevention programs.
In addition, an affordable and accessible program that teaches people with neurodevelop-
mental disabilities about laws of sexual behavior, developing consensual sexual relation-
ships, and one’s right to live without sexual exploitation and abuse is needed. Because
people with neurodevelopmental disabilities appear to be overrepresented both as targets of

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sexual abuse and as culprits of inappropriate social-sexual behavior, any program that aims
to address sexuality and relationship development among people with neurodevelopmental
disabilities needs to address both of these phenomena. With this in mind, we developed the
Social-Sexual Education Project (SSE).

The SSE Project: purpose and objectives

The Social-Sexual Education (SSE) project was designed to teach people with neurode-
velopmental disabilities about healthy and safe relationships and how to recognize sexual
abuse and coercion. We use the broad term neurodevelopmental disabilities within our study
to include people who have been identified with intellectual disabilities, autism spectrum
disorder (autism), and people who have related disabilities receiving services through North
Bay Regional Center (NBRC) regional center. The purpose of the SSE project was to cre-
ate an education tool that is developed directly from feedback of people with disabilities,
reflects the sexual and gender diversity that is exists in the community, and empowers peo-
ple to be their own decision makers regarding relationships. The material was developed to
be an easily accessible, affordable, and effective tool for professionals to use with their adult
clients with neurodevelopmental disabilities. Hence, this study explores the process of what
it takes to bring this type of education tool to light. The three primary objectives of the SSE
project were to; (1) Make use of research, community collaboration and evidence-based
practices to develop a teaching protocol designed to decrease risk factors associated with
sexual abuse and increase prosocial sexual behavior, (2) Make use of community collabora-
tion and local partnerships to create a teaching protocol that is accessible and user-friendly
for local professionals and beyond, and (3) Establish a research and clinical partnership
to begin evaluating the utility of the SSE tool for providers to use with individuals with
neurodevelopmental disabilities. The SSE project was carried out across three Phases. The
Development Phase (Phase 1), Teaching Phase (Phase 2), and Evaluation Phase (Phase 3).

Overview of the SSE Project: phases 1–3

Phase 1. In Phase 1 (2018), The Development Phase, the research team associated with
NBRC developed an education tool called Relationships Decoded, a 25-lesson program
designed to teach people with neurodevelopmental disabilities how to create safe and mean-
ingful relationships while also giving them information about sexual abuse and coercion.
Relationships Decoded is divided into two programs, an Introductory Program and an
Advanced Program. The Introductory Program focuses on foundational concepts, such as
differentiating between public and private places, identifying wanted/unwanted touches,
and practicing the use of assertive communication. The program also provides foundational
information on attraction, dating, expected behaviors on public dates, and sexual abuse. The
Advanced Program explores signs of healthy and unhealthy relationships, it gives students
an opportunity to explore their own values and boundaries, and discusses dating safety
(including online safety). The program also addresses consent, coercion, sexual abuse, con-
traception, and sexual health.

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Every lesson includes two parts: lesson plans for facilitators and visual supports for learn-
ers. Lesson plans are only viewed by facilitators, whereas, the visual supports are presented
to the participants. The first page of every lesson plan includes goals, teaching tips, learning
objectives, and any necessary materials. Lesson plans guide facilitators by providing icons
on the left margin that correlate with the visual supports (i.e., photos and videos). The right
hand column provides verbal prompts for facilitators. Bolded sentences are recommended
to be spoken verbatim by the facilitator. All other language includes suggested prompts and
discussion starters through the use of gender inclusive language.
During Phase 1, a panel of 46 consumers, all adults with neurodevelopmental disabilities,
reviewed the SSE tool and made recommendations about the inclusion or exclusion of pho-
tos and videos. They also participated in focus groups, providing information on whether
they felt the tool was helpful. The research team then modified the curriculum based on this
feedback.
Phase 2. In Phase 2 (2019), The Teaching Phase, professionals including credentialed
special education teachers, school psychologists, board certified behaviorists, and licensed
mental health providers, served as facilitators to pilot test the SSE Introductory or Advanced
Programs with the clients they serve. These facilitators were recruited by word of mouth and
expressed interest in the education content. We recruited 10 facilitators from diverse agen-
cies within four counties in California (CA). Facilitators were paid a stipend to participate
in pilot testing for a one-year period and meet monthly as a group to share their experiences
throughout the year with the research team. As part of the SSE program, the facilitators
also completed seven eLearning training modules outlined on the Autism Focused Inter-
vention Resource and Modules website (AFIRM; https://afirm.fpg.unc.edu/afirm-modules).
The modules included, technology-based instruction, video modeling, cognitive-behavioral
interventions, social narratives, social-skills training, antecedent-based interventions, and
scripting. These evidence-based practices were adopted based on the National Professional
Development Center on Autism Spectrum Disorder 2014 Report (Wong et al. 2014).
During Phase 2, the facilitators reviewed and provided feedback on each lesson plan they
administered, and again, the research team made revisions and modifications based on their
feedback. Some facilitators also administered pre- and post-tests to measure how well their
clients with neurodevelopmental disabilities were learning the SSE content.
Phase 3. Phase 3 (2020), The Evaluation Phase, was a collaborative effort between
NBRC and the University of California, Davis (UC Davis). In Phase 3 we reviewed and
examined the consumer focus group feedback collected in Phase 1, and pre- and post-tests
and lesson plan evaluations collected in Phase 2. We also gathered feedback from the pro-
gram facilitators via interviews to better understand successes and barriers to using the
SSE tool with their clients. Institutional Review Board (IRB) approval was granted at UC
Davis prior to the start of Phase 3, and verbal consent was obtained from each participant
prior to participating in phone interviews. The participants were aware that the interviews
were audio recorded. Finally, in addition to evaluating the quantitative and qualitative data
sources, during this phase the research team developed and launched a website to make the
SSE material (including the web application) free and accessible to interested professionals
over a two year period (www.relationshipsdecoded.com).

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Methods

Measures and procedures

Consumer Panel Feedback. Consumer feedback from panel sessions with adults with neu-
rodevelopmental disabilities was collected during Phase 1. Feedback was collected using
the researcher-developed, Consumer Panel Feedback Form, which included a series of
eight yes/no questions related to the usefulness of the SSE content. Panelists were asked
yes/no questions orally and answered with verbal or nonverbal responses (e.g., hand raising,
head nodding, etc.). Ratings on the form were examined to better understand the consumers’
perceptions of the tool’s usefulness and accessibility.
Client Descriptive Information. Research suggests that the intersection between gen-
der, race, and disability have significant implications for how people are targeted for sexual
violence and exploitation (Brown 2017). With this in mind, facilitators completed a ques-
tionnaire outlining descriptive information about their clients’ age, gender, race, and dis-
ability. They also gathered the following information from their clients: (1) Their experience
with employment; (2) Their experience with relationships; (3) Whether they experienced an
emotional reaction to the program’s content. No identifying information about the clients
was collected.
Lesson Plan Evaluations. The facilitators completed lesson plan evaluations after each
lesson they administered during Phase 2. They reported information on the size of their
group and the lesson number they completed. In addition, the facilitators rated each of their
lessons using a 5-point scale (Excellent, Very Good, OK, Needs Improvement, and Not So
Good). The facilitators also indicated whether they felt the SSE materials were effective in
addressing the overall goal(s) of the lesson.
Pre-Tests/Post-Tests. Researcher-developed pre- and post-tests were administered
during Phase 2 to gauge clients’ understanding of the SSE content. The assessments were
designed for individuals with neurodevelopmental disabilities and included simplified sen-
tence structure, straightforward terminology, and bias-free language (Nicolaidis et al. 2020).
Questions centered on relationships, safety, laws, and signs of abuse. The Introductory (10
questions) and Advanced (20 questions) pre- and post-tests addressed the core learning
objectives of the program. Scores from the pre/post tests were analyzed to evaluate change
in client performance. Minor word changes were made to the Introductory and Advanced
tests after administering them to a small number of clients. Interrater agreement between the
two forms was high (Introductory [ICC = 0.786; CI: 0.652–0.886]; Advanced [ICC = 0.742;
CI: 0.550–0.878]).
Interviews. Individual structured interviews were collected during Phase 3 to learn more
about the facilitators’ experiences with the SSE tool. The 15-question interviews were con-
ducted over the phone and audio recorded. The data was then transcribed by two research
assistants affiliated with UC Davis in order to identify and extract themes from the facilita-
tors’ responses. The interview questions are listed in the Appendix.

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Results

Consumer Panel Feedback. The panels of consumers consisted of 46 individuals with

neurodevelopmental disabilities. The consumers were read a series of questions and asked
to indicate “yes” or “no” verbally or by raising their hands to indicate “yes.” See Table 1.
The majority of consumers (82%) expressed an interest in dating, yet most of them (40%)
had never learned about relationships or dating. 80% of consumers indicated a preference
for taking a class with a small group; 70% expressed a preference for a coed class.
Client Descriptive Information. Six of the 10 facilitators completed a questionnaire
outlining descriptive information on their 54 clients. See Table 2. The clients exhibited a
range of disabilities, including intellectual disabilities and autism spectrum disorder. Co-

Table 1 Consumer Panel Total (n = 46) %

Feedback Yes
1. How many people here are interested in having a boyfriend/ 82%
girlfriend?
2. Have you ever been in a class about relationships? 40%
3. After looking at these pictures, do you think that these 98%
would be useful to have a conversation about relationships?
4. After watching each video, did you find the video 100%
interesting?
5. After looking at the pictures and watching the videos, 83%
would you be interested in taking a class that shows pictures
and videos like these?
6. Did this make you interested in having a class or conversa- 90%
tion about relationships?
7. Would you rather be in a class about relationships that has a 80%
lot of other people in it or a small group of people?

Table 2 Client Descriptive Total (n = 54)

Information
Demographics
Age, M (SD) 24.85 (12.51)
Gender (% male) 52%
Race
White 48%
Latina/Latino 32%
Multiracial 04%
Asian 04%
Black 02%
Other 4%
NR 6%
Experiences (%)
Employment 52%
Relationship 41.20%
Note. Not Reported (NR) Emotional Reaction 29.40%

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occurring mood and specific learning disabilities were high. The majority (82%) of the
clients ranged in age between 18 and 29 years. Three clients were under the age of 18, three
between 30 and 40 years old, and three over the age of 50. They were fairly diverse in terms
of race and ethnicity.
Lesson Plan Evaluations. The facilitators completed a total of 131 entries following
their lessons. See Table 3. Groups ranged in size between 1 and 14 participants (M = 7.35;
SD = 3.52) and were delivered in schools (33%) and clinical settings (65%; day programs,
community agencies, regional centers, private practices). The facilitators completed 5 of
the 12 total lessons (SD = 3.18). The facilitators rated their lessons as “excellent” or “very
good” and felt the lessons were effective overall. We did not observe significant differences
in group size, curriculum use, or the number of lessons completed between schools and
clinical settings.
Pre-Tests/Post-Tests. One-way ANOVAs were then used to examine differences
between pre- and post-test scores from 54 clients who participated in the SSE program.
Scores were dropped for participants who did not complete both pre- and post-tests. When
examining scores from the Introductory and Advanced Programs together, there was a sig-
nificant difference between pre- and post-test scores, F (1) = 17.62; p < 0.001), with clients
who participated in the intervention performing significantly better on the post-test. Scores
from pre to post-tests improved from 8.44 (SD = 4.84; 53.2%) to 12.82 (SD = 3.65; 75.36%)
on average—a 4.38 or 22.16% score difference overall. This significance in score difference
remained when examining differences between pre- and post-test scores from the Intro-
ductory and Advanced Programs separately. Clients who participated in the Introductory
Program performed significantly better on their post-test, F (1) = 13.75; p < 0.001), with
scores improving from 4.77 (SD = 2.98) to 9.00 (SD = 0.97). Clients’ scores also significantly
improved from 11.62 (SD = 3.77) to 14.10 (SD = 3.33) on the Advanced Program.
Structured Interviews. We interviewed the 10 facilitators to gather information about
how they learned and delivered the SSE program. All interviews were completed over the

Table 3 Group Size, Setting, Total

and Lesson Information (n = 131)
Group Size
Average 7.35
(3.52)
01–4 18%
05–9 49%
Note. Average group size and 10–14 33%
standard deviation are reported Setting
as well as the percentage of School 33%
groups with varying sizes. Clinical 65%
Of the sessions that included
four (4) or fewer clients, 9% NR 02%
were delivered in a 1:1 format. Lessons Completed
Average number of lessons Average 5 (3.18)
completed and standard 1–4 51%
deviation are reported as well
5–8 29%
as the percentages for varying
lessons completed 9–12 20%

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phone and ranged between 20 and 50 min. The interviews were audio-recorded and tran-
scribed, and five themes were identified. We outline each theme below.

1. Addressing an important area of need

The facilitators highlighted many notable strengths of the SSE program, but perhaps the
most important was that the program addresses a critical area of need—to teach adults with
neurodevelopmental disabilities about safe and healthy relationships. Many of the facilita-
tors recognized that their clients with neurodevelopmental disabilities were highly vulnera-
ble and more subject to abuse and victimization than other populations. They were surprised
by the lack of social-sexual education offered to them during adolescence and adulthood,
noting that their clients had very little to no education. They recognized that individuals
with neurodevelopmental disabilities were often denied opportunities to access social-sex-
ual education, leaving them unequipped to navigate relationships and make safe decisions.

2. Time, Space, and Tools

The SSE program provided the facilitators with the time, space, and tools they needed to
teach their clients about social-sexual education. They found that the instructional materials
supported awareness for navigating romantic relationships while building understanding of
coercion and sexual abuse. The facilitators noted that their clients were able to both take-
up and generalize the SSE content. For example, one facilitator talked about how a client
recognized someone as underage within the community; another spoke of clients’ use of
“assertive” language. Several of the facilitators noted that conversations about sexual abuse
arose from the lessons. They said that when their clients were given an opportunity to dis-
cuss abuse, they began to differentiate appropriate from inappropriate behaviors.

3. Accessibility, flexibility, and evidence-based

The third theme was related to the strengths of the SSE program. All facilitators felt that the
SSE program was packaged in a manner that was user-friendly, well organized, and easy
to navigate. They felt leaning about evidence-based practices, such as cognitive behavioral
interventions and video modeling, was an important aspect of the program, and that the
embedded photos and videos were “core” to the program as well as an effective means for
introducing and discussing sensitive information. The facilitators also liked having access
to guided questions but appreciated the flexibility of the tool overall. They commented on
how they individualized the content to align with their clients’ strengths and needs as well as
their own instructional approach (i.e., “student-lead,” “collaborative,” “structured”).

4. Understanding barriers and benefits related to age and setting

Another important theme that emerged was understanding the barriers and/or benefits asso-
ciated with age and setting. Although one facilitator stated that embedding social-sexual
content into a high school curriculum felt preventive, many spoke of challenges related to
educating younger clients about dating and relationships. Immaturity, naivety, limited expe-
rience with or desire to date, and living with “protective parents” were common barriers the

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facilitators felt made instruction more difficult and interfered with their clients’ motivation
to learn and connect with the material. In contrast, the facilitators who worked with older
clients indicated that their clients’ experiences with sexual trauma often led to emotional
reactions to the content, which in turn made instruction more difficult. Furthermore, the
facilitators within clinical settings reported barriers related to attendance, consistency, and
transportation. One facilitator stated, “relying on parents and supportive living agencies
to provide transportation to the group had been a struggle.” These barriers may be less of
a concern within educational settings, where attendance is mandatory, daily schedules are
structured, and transportation is provided.

5. Considering sexual and gender diversity

An interesting theme that emerged was centered on sexual orientation and gender diversity.
Several facilitators raised concerns about photos of same sex couples, indicating that the
photos became an “obstacle” to instruction or generated an intense reaction from their cli-
ents. One facilitator stated that, “categorization for individuals whose gender wasn’t clear
made teaching a challenge at times.” Similarly, some facilitators reported that their clients
exhibited strong reactions to “the cultural components of the curriculum materials.” One
facilitator, for example, perceived that he observed “latent racism or homophobia” within
his lessons. More specifically, he noted that his clients assumed two men in a photo must be
father and son or that two Black individuals in a photo must be related. On a related note,
a few facilitators discussed their issues related to teaching the SSE content. One facilitator
said, “If you have any hang-ups or black and white thinking around sexual orientation, don’t
use this curriculum.” Another stated, “The fit of the program depends on an individual’s
internal or value system,” and further, it is important that leaders have a “neutral stance”
when delivering the content. In other words, facilitators expressed discomfort in managing
conversations surrounding human diversity. Their perceptions (real or imagined) involving
reactions that might invite conversations about homophobia, transphobia, or even racism
were viewed as obstacles to teaching.

Discussion

People with neurodevelopmental disabilities and their providers should have access to
effective social-sexual education, yet this is often not the case as both accessible tools and
opportunities are often limited. The SSE project begins to address these significant gaps in
the field. We developed the SSE tool in collaboration with people with neurodevelopmental
disabilities, educators, and clinicians and then pilot tested its utility among local profession-
als and their adult clients with neurodevelopmental disabilities. We gathered information on
the training process (what it takes professionals to learn the curriculum) and the delivery
process (what it takes professionals to implement the curriculum). We also collected initial
evidence on the effectiveness of the tool for people with neurodevelopmental disabilities.
Our study provides preliminary evidence that the SSE tool is a promising program for pro-
fessionals to use with their adult clients with neurodevelopmental disabilities. It is acces-
sible to and available at no cost for providers.

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Contributions and implications

The professionals within our study reported that the materials were well organized and
easy to navigate yet flexible enough to individualize with their clients. They noted that the
embedded videos and photos supported their clients’ engagement, understanding, and gen-
eralizability of the material and felt their lessons were effective overall. In addition, their
clients showed improvement from the beginning to the end of the program on the pre- and
post-tests. Although additional research is needed, these findings indicate that the SSE tool
may provide an effective means for professionals to teach adults with neurodevelopmental
disabilities how to create safe and meaningful relationships while also giving them informa-
tion to keep themselves safe.
Accessibility. Most of the facilitators in this study noted that resources addressing social-
sexual education are not available. They reported that most of their clients had not had any
type of education regarding sexual health and/or relationship development. However, when
we look to the research, we see that such programs have actually been developed, with many
of these programs demonstrating some success (Sala et al. 2019). Nevertheless, this seems
to be out of the awareness of professionals and/or inaccessible to them. Some of the biggest
barriers to sexual health programming for people with neurodevelopmental disabilities have
been; (1) a lack of funding afforded to such programming, and (2) a lack of guidelines to
direct such programming (Thompson el al., 2014). The SSE project addresses these barriers
by making the program available, at no cost, to anyone who has an internet connection and a
device to view the visual supports. Secondly, it conforms to guidelines set forth in BLINED
Assembly Bill 329, so educators can feel confident that they are following state guidelines.
Additional Training. Much of the research involved in sexual health for people with
neurodevelopmental disabilities focuses its attention onto the needs and outcomes of people
with disabilities. Our experience with the SSE project, however, indicate that perhaps the
biggest barriers lie not with the students or the lack of resources, but with the profession-
als who are tasked with delivering the education. Many of our facilitators reported feeling
uncomfortable when confronted with what they described as “homophobia” and/or students
getting “stuck” on pictures when the gender of a person was not clear. They espoused the
belief that instructors had to be extremely “open minded” to deliver the SSE program. Could
it be that these observations speak more to the discomfort of the facilitators rather than
characteristic of their clients?
Dinwoodie (2020) interviewed people with intellectual disabilities who identified as
LGBT and found that these individuals reported experiences of bullying and abuse, a lack
of support regarding their sexual or gender identities, and a variety of difficult coming out
issues. Research has shown that people with autism, especially people who are assigned
female at birth, have greater diversity in their sexual and gender expression (Dewinter et
al. 2017) than their neurotypical peers. Despite a paucity of robust research investigating
people with disabilities who are also gender or sexual minorities, Lund (2021) has found
that people with disabilities who are also gender and sexual minorities may be at particular
risk of sexual violence. There appears to be a very complex relationship between gender,
sexuality, race, and disability that makes gender minorities, sexual minorities, and ethnic
minorities targets of sexual exploitation and violence at higher rates when that person also
has a disability (Brown 2017). Given these facts, any program that is meant to teach people
with neurodevelopmental disabilities about sexual health and safe relationship development

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needs to acknowledge and respect gender and sexual diversity. Perhaps facilitators need
support in how to manage diversity, how to create an inclusive and unbiased environment,
and how to respond to questions/comments that may make the facilitator feel uncomfort-
able. One area of future research might focus on the characteristics and perspectives of the
facilitator, rather than the students themselves. It may be that the characteristics of a facilita-
tor have a strong relationship with student outcomes.

Limitations

Although the SSE project has many notable strengths, there are notable limitations. First,
the information that was collected through consumer feedback panels with adults with neu-
rodevelopmental disabilities was limited. The interviews were conducted in group settings,
so participants’ responses were not confidential, and the group setting may have effected
how people answered questions. In addition, the facilitators were all licensed or certified
healthcare professionals and/or special educators (i.e., licensed marriage and family thera-
pists, certified behavioral interventionists) practicing in the state of CA. They were inter-
ested in learning about social-sexual education and sought out the opportunity to participate
in the project. This limits the overall generalizability of the study findings and raises ques-
tions regarding the utility of the SSE tool for the general public. Future research is needed
to examine the qualifications and level of training necessary for successful implementation
of the SSE program. Furthermore, the measures used were developed as part of the study.
While the findings drawn from this study provide preliminary evidence, studies utilizing
valid and reliable assessments are needed to further understand the efficacy of the SSE tool
for people with disabilities.

Appendix

Interview Questions.
1. How easy was it to learn and implement the SSE curriculum?
2. Do you feel that you could have benefited from training on how to implement the SSE
curriculum with your clients? If so, what lessons do you wish you received training on?
3. How do you feel your lessons went overall?
4. What Evidence-Based Practices did you use? Which ones did you find the most helpful?
5. How would you describe your teaching style?
6. Can you think of one particular success story that you would like to share?
7. Do you feel that your clients were able to understand and apply the content they learned
during the intervention? Did you notice any evidence or signs that they generalized the
material?
8. Did you notice any patterns of behaviors or individual characteristics that made teach-
ing the curriculum more challenging? (e.g., avoidance behaviors, trauma, and external-
izing or internalizing behaviors, verbal ability, level of understanding, sex/gender, etc.)
9. What approaches did you use to handle or address challenging behaviors and issues?
10. Was there any content that you felt was difficult to teach? That was uncomfortable to
discuss?

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Sexuality and Disability (2022) 40:503–517 515

11. Did any sensitive topics arise from the lessons? In other words, did anyone self-dis-
close? If so, how did you follow-up?
12. What do you feel are the overall strengths of the SSE program?
13. Were there any barriers that made the SSE curriculum difficult to complete?
14. Would you use the SSE curriculum again? Why or why not?
15. What advice would you give to a new clinician about implementing the SSE curriculum?

Acknowledgements We would like to thank the co-creators of Relationships Decoded for making this proj-
ect possible: Mary Champion, Georgia Pedgrift, and Maurice Travis.

Authors’ contributions Dr. Pedgrift led the efforts outlined in Phase 1 and Phase 2. Dr. Sparapani led
the efforts outlined in Phase 3. Both authors contributed sufficiently to the writing and reviewing of the
manuscript.

Funding This project is supported by the California Mental Health Services Act and in partnership with the
Department of Developmental Services.

Availability of data and material All data sources are available upon request to the corresponding author.

Code Availability The coding process is available upon request to the corresponding author.

Declarations

Conflict of interest There are no conflicts of interest.

Ethics approval Institutional Review Board (IRB) approval was granted at the University of California,
Davis prior to the start of Phase 3.

Consent to participate Verbal consent was obtained from each participant prior to participating in phone
interviews.

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which
permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give
appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence,
and indicate if changes were made. The images or other third party material in this article are included in the
article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is
not included in the article’s Creative Commons licence and your intended use is not permitted by statutory
regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright
holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.

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