Source document: https://docs-lawep.s3.us-east-2.amazonaws.com/1697799914046.pdf (Liberia)
SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 1 Department of Psychology Sex Education for Children with Intellectual Disabilities and Autism Spectrum Disorder May, 2022 Student: Margrét Hera Hauksdóttir ID number: 010294 – 2589 Supervisors: María Jónsdóttir and Þórhildur Halldórsdóttir SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 2 Forewords and acknowledgment Submitted in partial fulfillment of the MSc Clinical Psychology degree requirements, Reykjavik University, this thesis is presented in the style of an article for submission to a peer-reviewed journal.
This thesis's research is the culmination of work over three semesters.

In the first semester, a literature review was written about sex education for children with developmental disabilities, and the blueprint for the research was drafted.

The second semester involved collecting participants and getting informed consent from parents and guardians and the thesis’s first draft of the method section.
Data collection took place over the second and third semesters, along with writing the final draft of this thesis.

This research was a part of a larger project conducted by my advisor, María Jónsdóttir.

She is composing a new specialized sex education material for children with developmental disabilities, who need more specific and graphic sex education material than their neurotypical peers.

The study's primary purpose is to evaluate the effects of this new educational material.
I want to give my gratitude to my advisors, María Jónsdóttir and Þórhildur Halldórsdóttir.

I want to thank María for igniting my interest in the subject and giving me endless encouragement and guidance throughout the study.

The idea for the research material came from her, and for that I am very grateful.

I want to thank Þórhildur for her admirable skills in research and guidance throughout the study.
Furthermore, I want to thank the children who participated in the study, showing patience throughout the study and interest in the sex education material.

I want to give thanks to the teachers participating in the study, for giving their time and knowledge to the study.

At last I would like to thank my parents, partner and classmates for showing me support throughout this project.
SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 3 Abstract Sexual health is an essential part of general health and well-being.

Research has shown that children with developmental disabilities, such as intellectual disability or an autism spectrum disorder, need more thorough sex education than their neurotypical peers.

This pilot study evaluated a new sex educational material designed specifically for children with developmental disabilities.
Participants included twelve 11-14 year-old children recruited from schools with special education departments in Reykjavik.

The sex education intervention comprised approximately 24 sessions spread over 12 weeks and was administered by each participant’s homeroom teacher.

A non-concurrent multiple baseline design was used in this study.

Two baseline assessments in which knowledge of sexology was measured were conducted prior to the intervention, followed by an assessment one week after the intervention.
No significant differences in knowledge of sexology were observed between the first and second baseline assessments.

However, a significant increased understanding of sexology was observed after the intervention compared to the first baseline assessment.

Teachers participating in the study valued the material as beneficial for them and their students.
The current study supports previous literature, showing that children with developmental disabilities need more specific sex education material than what is currently used in public schools.

Keywords; Sex education, developmental disabilities, puberty, sexuality.
SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 4 Sex Education for Children with Intellectual Disabilities and Autism Spectrum Disorder Sexual health is an essential part of general health and well-being (World Health Organization, n.d.).

Adolescents have described a need for proper sex education that covers basic safety, sexual health topics, and social and relationship skill-building (Cheak-Zamora et al., 2019).
Sexuality and intimacy are essential in children’s development, it influences health and quality of life for all adolescents, also those with developmental disabilities such as autism spectrum disorder or intellectual disability (Cheak-Zamora et al., 2019).

Children and adolescents must receive adequate sex education to be integrated into our society's rules concerning what sexual behaviors are considered appropriate or inappropriate.
Autism spectrum disorder and intellectual disability Autism spectrum disorder (ASD) is a neurodevelopmental disorder that impairs social skills and communication (American Psychiatric Association, 2013; World Health Organization, 2019).

Comorbidities are common for people with an ASD, such as attention deficit hyperactivity disorder (ADHD), anxiety, and intellectual disability.

In Iceland, the prevalence is estimated to be 2.7% (Delobel-Ayoub, 2020; Jónsdóttir & Sæmundsen, 2014).
Intellectual disability (ID) is a term used when a person has certain mental functioning and skills limitations and is characterized by a significantly reduced ability to understand new or complex information and learn new skills (World Health Organization, 2017).

ID is classified as mild, moderate, severe, and profound, depending on various functioning measures and clinical judgment.

Comorbidities are also common for people with ID, such as anxiety, depression, cerebral palsy, ADHD, and ASD.
ID affects approximately 1% of the population worldwide (Amor, 2018).

There are no existing numbers on the prevalence of ID in Iceland.

SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 5 The term children with developmental disabilities will be used in the current study regarding children with ASD and ID.

Puberty and sexuality Puberty is a time of monumental change in every person's life, transferring from childhood to adulthood.
Puberty typically starts around 10 to 16 years old and typically starts earlier for girls than boys (Cummins et al., 2020).

Puberty involves biological changes, as well as cognitive and social maturation.

For most children with developmental disabilities, puberty is on par with typically developing children, involving the same biological changes at the same age as their neurotypical peers.
Even though puberty occurs at a similar time for children with developmental disabilities, physical maturation is often not accompanied by cognitive and social maturation (Corona et al., 2015).

Sexuality includes a wide variety of physical, emotional, and social interactions (Urbano et al., 2013).

Sexuality develops from an early age, and curiosity about sex usually increases with age, and information about it primarily comes from peers.
Due to a lack of social ability and communication skills, children with developmental disabilities often miss out on these conversations and information from peers (Corona et al., 2015; Michielsen & Brockschmid, 2020; Urbano et al., 2013).

Even though teenagers with developmental disabilities often miss out on these opportunities and do not discuss sex with peers, they are interested in their own sexuality.
Research shows that they also have sexual needs and desires and a longing for intimate relationships (Corona et al., 2015; Jónsdóttir, 2010; Urbano et al., 2013).
Sex Education for children with developmental disabilities Research has shown that children with developmental disabilities need more specific sex education material than their peers who follow typical development, given that they do not have the same opportunities to learn the things neurotypical children learn from daily SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 6 experiences (Curtis, 2017; MacKenzie, 2018).
They may have limited understanding and knowledge about the functions of their body, which body parts are private, and what behaviors are inappropriate (Hannah & Stagg, 2016).

It is important to teach girls and boys about the changes that follow puberty, i.e., hygiene, menstrual care, articulating period pains, as well as how to deal with erections and wet dreams (Cummins et al., 2020; Schaafsma et al., 2015).
Children with developmental disabilities can fail to distinguish between private and public behaviors.

They might try to masturbate in public places, remove clothes in public, try to touch others in their private places, make inappropriate comments or show an obsessive interest in another person (McLay et al., 2015).
Appropriate and accepted behavior depends not only on the behavior but also on the social, cultural, and familial context, the time and place, as well as developmental norms (McLay et al., 2015).

Inappropriate behaviors can stem from a lack of understanding and proper sex education (Beddows & Brooks, 2016).

These points highlight the importance of providing people with developmental disabilities with proper sex education.
People with developmental disabilities are at an increased risk for sexual abuse for reasons such as their trusting nature, limited understanding of sexuality, limited understanding of social cues to realize what is acceptable behavior, and lack of sex education (Curtis, 2017; Urbano et al., 2013).
Education and awareness are critical factors for people to identify violations of fundamental human rights, understand appropriate boundaries, and distinguish inappropriate behavior from other people and themselves (Beddows & Brooks, 2016; Urbano et al., 2013).

A few myths might explain why these children are not getting proper sex education.
On the one hand, it is a common myth that people with developmental disabilities are eternal children and are therefore not sexual beings, that they are asexual or cannot give informed SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 7 consent for sexual relations (Ferrante & Oak, 2020; Jónsdóttir, 2010; Memarian & Mehrpisheh, 2015; Menon & Sivakami, 2019).
On the other hand, some people tend to be concerned about people with ID having sexual urges, thinking it will lead to inappropriate behavior, such as masturbation in public, concerning use of pornography, lack of appropriate boundaries, and touching or even pedophilia (Ferrante & Oak, 2020).

There is still a lack of understanding about the sexuality of people with developmental disabilities, and it is often considered taboo.
Even though ideology has shifted away from viewing their sexual behavior as deviant, they still have difficulty expressing sexual behavior in an appropriate time, manner, and place (McLay et al., 2015).

Standard sexual education may not be adequate to address the needs of children with developmental disabilities (Cheak-Zamora et al., 2019).

School is often the primary source of sex education and information for children with developmental disabilities (Nelson et al., 2020).
Therefore, the education needs to be of good quality and portrayed in an understandable way to support their transition into adulthood.

Parents should be informed about sex education at school to support the children’s learning in day-to-day life (Urbano, 2013).

Parents and teachers report wanting more support and cooperation regarding sex education (Jónsdóttir, 2010; Pryde & Jahoda, 2018).
Some parents feel hesitant to discuss matters related to sexual behavior with their children with developmental disabilities (Solomon et al., 2019).

This may be due to many reasons, such as fear of increasing likelihood of sexual behavior, lack of confidence in their own ability to teach this matter, or not realizing that children with developmental disabilities have romantic and sexual desires (Solomon et al., 2019).
A team approach should be used in teaching, with parents and caregivers providing primary instructions while formal sex education is provided by the school (Travers & Tincani, 2010).

Parents need enough information to provide continuity of education at home and reinforce what is taught at school (Beddows & Brooks, 2016).
SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 8 Children with developmental disabilities need more intensive education for a more extended period than typically developing children.

Repetitive and individualized education needs to start from an early age (Corona et al., 2015; Jónsdóttir, 2010; Urbano et al., 2013).

Booster sessions are recommended as the person grows up, to teach additional information or reinforce principles already learned or forgotten (Travers & Tincani, 2010).
Research has shown that children with developmental disabilities need graphic sex education with visual material and pictures (Corona et al., 2015; Jónsdóttir, 2010; Urbano et al., 2013).

The material should be broken down into concrete and comprehensible steps (Corona et al., 2015; Urbano et al., 2013).

The first step should be to teach them appropriate social skills regarding sexual behavior and increase their understanding of social norms.
These aspects are important before more technical aspects of sex education are taught.

Michielsen and Brockschmid (2020) identified the main barriers related to sex education for children and young people with developmental disabilities.

Firstly, they name the social misperceptions of people with developmental disabilities as asexual and that they require protection.

Furthermore, educators have limited support, leading to non- comprehensive and normative sex education.
They also point out that diversity among children and young people with developmental disabilities is broad, so a general approach is challenging.

At last, competing priorities related to the health of children with developmental disabilities may put sex education far down on the list of issues to be addressed.

Study objectives It is undeniable that proper sex education is needed for this group of children.
However, in order to meet this need, an enhanced understanding of evidence-based practice in this area is needed.

In general, programs made for children with developmental disabilities do not have clear outcome objectives, lack theoretical underpinning, have not been systematically evaluated, and relevant groups are not consulted in the development of the SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 9 material (Schaafsma et al., 2013).
This pilot study evaluated new sex educational material for children with developmental disabilities.

A non-concurrent multiple baseline, in which a series of A-B replications with randomized baseline periods and follow up assessment was used to assess the effectiveness of the sex education intervention.
Method Participants The inclusion criteria for this study were as follows: (a) ages 11-14; (b) having an established diagnosis of an intellectual disability and/or autism spectrum disorder; and (c) ability to complete the assessment at baseline.

All participants and their teachers spoke fluent Icelandic.
To recruit participants, the research team contacted ten heads of departments in public schools with special needs departments and two heads of departments in special needs schools in the capital area regarding the study and assistance with recruitment.

Out of 12 contacted, seven schools agreed to participate.

For the schools that expressed interest in the study, the teachers received information regarding the study and a short introduction about the material on Teams.
They received information about the sexual education intervention, what participation entailed and how long the study would take.

Teachers and school officials then contacted parents about enrolling their child in the study.

Informed consent was obtained from parents or guardians of interested families.

Children who met eligibility criteria (n = 19) were then scheduled for an appointment to complete the baseline assessment.

A few participants dropped out (n = 7) due to various reasons (See Figure 1).
The final sample included 12 children.

Participants were either in a special needs school (n = 1) or a special needs department (n = 11).

SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 10 Figure 1 Consolidated Standards of Reporting Trials (CONSORT) flow diagram 19 participants referred to project Excluded (n = 3): Three participants were not able to finish the first baseline assessment.
Excluded (n = 2): Two participants did not finish the intervention 16 participants completed the first baseline assessment Excluded (n = 1): One participant did not finish the second baseline 15 participants completed the second baseline assessment 13 participants completed the intervention 12 participants completed the final measures.

lk Excluded (n = 1): One participant did not finish final assessment Note.
This diagram shows the flow of participants through each stage of the trial and the reasons for dropout.

SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 11 Three participants were not able to finish the first baseline measure due to a lack of understanding or verbal development.

P7 and P9 terminated participation because their teacher had to take sick leave and resigned from the study.
P16 terminated her study because the education program did not align with her other study material, according to her teacher.

P5 finished the intervention but did not want to complete the final assessment.

Measures Sexual knowledge.

A measure to assess the participant’s knowledge of sexology was developed explicitly for this study by one of the researchers (M.

J.

), as no pre-existing instrument for children with developmental disabilities was available in Iceland.
The measure was created from the study materials called Sexual Health, a workbook on puberty (Kynheilbrigði-verkefnabók um kynþroskaárin).

The measure was designed to capture key components of sexology that are typically assessed within this field, based on international models of questionnaires the author took into account when creating this measure General Sexual Knowledge Questionnaire (Talbot & Langdon, 2020).
The assessment contained four sections that give varying amounts of points; (1) The Body, containing 18 points (2) Private and Public Places, containing 18 points (7A) Puberty for Girls, containing 16 points (7B) Puberty for Boys, containing 19 points In total, there are 71 points; the higher the score, the greater the child’s knowledge of sexology.

Survey on acceptability and feasibility of the program.
An electronic survey to assess the acceptability and feasibility of the program was created for teachers participating in the study.

The survey contained 20 questions, divided into four sections: sex education at school and personal experience, general questions about the sex education material, certain elements SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 12 of the sex education material, and the students’ experience of the material.
The teachers completed the survey once all participants had completed the program and the final assessment.

Sex education program The new sex education material is called Sexual health, a workbook on puberty (Kynheilbrigði-vinnubók um kynþroskaárin).

The participant’s homeroom teachers received the sex education material once the student had completed the first and second assessments.
The homeroom teacher administered the psychoeducation in small groups, ranging from one to four participants in each group.

For the initial assessment of the program’s potential effectiveness, it was decided to evaluate the following components of the sex education program: The Body and Private Parts of the Body, Private and Public Places, and Puberty for Girls and Boys.
Content of the sex education program that was not evaluated in this study were: Self Image, Good and Bad Touch, Relationships, and the Cycle of Life.

Study design A non-concurrent multiple baseline was used in this study.

This design is a series of A-B replications with randomized baseline periods.
A non-concurrent multiple baseline was chosen over a concurrent multiple baseline design because it has a degree of flexibility that may allow for their use in studying more complex social contexts, for example, an educational program (Harvey, May & Kennedy, 2004).

Although it is recommended that researchers use three to four baseline measures, Barlow et al.

(2009) noted that theoretically, two baselines are enough.
Procedure The measure was administered at baseline and prior to and following the intervention.

Each item on the questionnaire was administered verbally to the participants, and participants then answered verbally (See Appendix 1-2).

In order to facilitate comprehension, a picture SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 13 accompanied most items (See Appendix 3-5), and participants were encouraged to point to the pictures.
The researcher (M. H. H.) administered the assessment and rated and scored the answers.

The participant’s homeroom teacher also observed the administration and scored the answers in parallel to the researcher for approximately half of the participants (46.15%) in order to enhance reliability and ensure inter-observer agreement.

The teacher received instructions on how to rate and score each answer, and they were not allowed to assist the participant or explain the correct answers.
The researcher conducted the baseline assessments prior to the sex education program.

Each participant was randomized to a baseline condition.

The participant completed the second baseline assessment 1 to sixteen weeks after the initial assessment based on the randomization.

The second baseline measure was a condensed questionnaire.
The reason for using a condensed questionnaire was that the participants are children with developmental disabilities, and they often lack the patience to answer questions for 30 to 50 minutes.

The homeroom teacher conducted the condensed questionnaire.

The homeroom teacher administered the sex education program to groups of one to four participants.

Approximately one week after the intervention was completed, the final assessment occurred to assess the program’s effectiveness.
Statistical analysis In a single-case multiple baseline research, statistical tests are the exception rather than the rule (Bulté & Onghena, 2009).

Therefore, researchers relied more on visual and descriptive statistics.

The independent variable was the intervention in the current study, i.e., the administered sex education materials.

The dependent variable was the change in the children’s knowledge of sexology prior to and after the sex education.
The null hypothesis in the study was that there would be no effect from the lessons.

The results were reported by SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 14 descriptive statistics, i.e., the number of participants, age, and scores.

A visual inspection was conducted.

Data were plotted on a graph in which the y-axis represented the independent variable, and the x-axis represented the dependent variable.
A paired sample T-test was used to evaluate differences in knowledge of sexology between the baseline assessments and the first baseline assessment and the post-intervention assessment.

An evaluation of the reliability or consistency of the intervention effects was based on these graphs and t-test scores.

Results Twelve participants completed the assessments and received the intervention (P1, P2, P3, P5, P6, P8, P10, P11, P12, P13, P14, P15).
Participants were aged 12 to 14 (M = 13.08; SD = .66), where 16.7% were aged 12 years old, 58.3% were aged 13 years old, and 25.0% were aged 14 years old.

The majority of participants were male (n = 10 or 83.3%) and 16.7% were female (n = 2).

A paired sample t-test showed that there is no statistical difference between the first (M = 1.33, SD = 1.23) and the second baseline assessments (M = 1.58, SD = 1.31; t(df) = 11 , p = .191), indicating no change in knowledge of sexology had occurred (see Figure 2).
Conversely, there was a significant difference in the knowledge of sexual education material from the first baseline assessment after the education (M = 2.58, SD = 1.92, t(df) = 11, p = .006, Figure 2).

SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 15 Figure 2 Relative Results from a Condensed Questionnaire.
The Y-axis Displays the Percentage, and the X-axis Displays the Participant’s Relative Total Points In Figure 3, the differences between the first and last assessment on each chapter and the relative total score for each participant are displayed.

In the baseline measure, the points ranged from 21 to 43 (M = 32.91, SD = 6.73).

In the final measure, the points ranged from 32 to 61 (M = 46.66, SD = 8.94) (see Figure 3).
Participants consistently got a higher score on matters regarding private places on the body and private and public places (e.g., the bathroom, living room, etc.)

and puberty at the post-intervention assessment.

SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 16 Figure 3 Relative Data Points for the First and Last Assessments for Participants 1–15.
Data Points are Shown for Each Chapter and the Relative Total Score SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 17 Survey on acceptability and feasibility of the program After the intervention, teachers who administered the sex education (n = 6) completed a survey on the acceptability and feasibility of the program.

Table 1 shows the teachers’ ratings on their experience of providing sex education to youth with developmental disabilities before the study.
SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 18 Table 1 Teacher Experience on Providing Sex Education to Youth With Developmental Disabilities Before this Study Yes No Neither/do not want to answer Were you taught methods of teaching sex education to students with neurodevelopmental disorders in your studies?

83.3% 16.6% Do you feel that you need more support in teaching this subject than any other subject?
50.0% 50.0% Is sex education a fixed program taught at least every other semester in your school?

50.0% 50.0% Is it sensitive to teach students with developmental disabilities sex education?

Do you think it is important to receive training in teaching students with developmental disabilities sex education?

50.0% 33.3% 16.6% 83.3% 16.6% Had your students previously received sex education on similar topics as in this study?
66.6% 16.6% 16.6% Regarding the sex education material used in this study, most teachers had a positive experience teaching the education program (n = 4, 66.6%), even though it was challenging to start using the program initially (n = 4, 66.6%).

Most teachers deemed it valuable to receive specialized sex education material (n = 4, 66.6%) and valuable for their students (n = 5, 83.3%).
All the teachers thought it was useful for their students to learn about each chapter in the sex education material (n = 6, 100%).

Most teachers thought that the student's experience was rather positive (n = 5, 83.3%).

Half of the teachers said that the material was too light for their students, while the other half said it was an appropriate difficulty level.
Discussion The literature has consistently demonstrated the need for a specified sex education material for children with developmental disabilities (Beddows & Brooks, 2016; Cummins et al., 2020; Curtis, 2017; MacKenzie, 2018; Urbano et al., 2013).

Research has shown that SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 19 children with developmental disabilities need visual and graphic material broken down into comprehensible steps (Corona et al., 2015; Jónsdóttir, 2010; Urbano et al., 2013).
This pilot study assessed the effectiveness and feasibility of a new sex education program for children with developmental disabilities.

The material in the sex education program focused on the body, private and public places, and puberty.

An overall increase in knowledge of sexology was observed following the program.

A particular increase in knowledge of private places on the body, private and public places and puberty was observed.

This indicates that the sex education material was effective.
The fact that children with developmental disabilities are at more risk for sexual abuse, and other inappropriate behaviors than other children underlines the need for further education (Curtis, 2017; Urbano et al., 2013).

Teaching children these basic steps can be critical factors for them so they can identify violations, understand appropriate boundaries, and distinguish inappropriate behavior (Beddows & Brooks, 2016; Urbano et al., 2013).
It was notable that the scores from the baseline assessments fluctuated somewhat.

We believe that this may be due to the first assessment taking a long time to complete, or approximately 40 minutes.

It was difficult for some participants to sit through and complete this assessment.

This might indicate that the measure needs to be shorter and more concise.

This group of children can struggle with a long and challenging questionnaire, such as the first one.

That might explain the fluctuation.


The survey for the teachers gave a better insight into the feasibility and acceptability of the program.

According to their answers, they want more support in their work when it comes to sex education for children with developmental disabilities.

This aligns with other studies where teachers generally want more support when teaching sex education to children with developmental disabilities (Jónsdóttir, 2010; Pryde & Jahoda, 2018).
SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 20 The teacher’s experience in this study was primarily positive, and most of them thought it was useful to have specialized sex education material prepared for their students with developmental disabilities.

In addition, they thought the study material was helpful for their students.

Most teachers said that the experience for their students was rather positive.

Limitations First, there were several complicating factors in implementing the study.
Due to dropout, Covid-19 quarantine, and a slow start, it was decided to cut down the material.

As such, the program comprised only four chapters of the eight chapters.

It would be interesting to examine the effectiveness of all of the chapters in future research.

Second, follow-up was not possible due to time limitations.

Originally the plan was to do a follow-up three months after the study.

Third, only two baseline measures were conducted.


It would have been preferable to conduct three or four baseline measures to ensure that no change in knowledge of sexology occurs naturally over time for this age group.

Alternatively, a randomized control trial in which some youth are assigned to receive the sex education program compared to a control group (treatment as usual or waitlist group) would be another option to assess the effectiveness of the program.
Fourth, the study relied heavily on homeroom teachers.

Even though they all got the same sex education material, the same instructions, and an introduction about the material, they possibly delivered it in diverse ways.

It might be more effective to have one or two teachers deliver all the material to minimize diversity in the deliverance of the material.

Furthermore, it was difficult to find teachers who were ready to participate.
Those who declined to participate said that there was too little time to prepare for the study, it was too much commitment to teach the intervention two times a week, and some did not foresee SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 21 being able to finish the materials on time.

One teacher said that the content was too sensitive for their students, i.e., sexuality and conception.
Fifth, ASD and ID manifest in different ways, and some participants had more limiting developmental disabilities than others.

Teachers reported that the material was too easy for some children, while it was very complex for others.

In some schools, the children had already partly covered the material covered in the sex education material, while others had not.

Sixth, researchers did not get a specified diagnosis for each participant.
In future research, it might be helpful to look at their diagnosis to get a more homogeneous group.

This however implicates that the program works for a diverse group.

It would have been interesting to question the parents or guardians of each participant as well.

Parent involvement is crucial in sex education (Urbano et al., 2013).

It could be helpful to give them a survey and see their experience if they see any difference in their child's behavior.
Conclusion The pilot study showed that youth with a disability can benefit and increase their knowledge using the sex education material assessed in this study.

Each participant showed progress in all the topics covered in the program.

This study supports the literature that children with developmental disabilities need specialized sex education material and that teachers need support when it comes to this subject.
Although effective, the study indicates that there are still obstacles to making sex education a vital subject in children's education.

These children need additional education, so it is essential to give sex education space in the classroom.

It is important to prepare these children for adulthood so they can step forward as sexual beings in a diverse society.

SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 22 References American Psychiatric Association.

(2013).
(2013).

Diagnostic and statistical manual of mental disorders (5th ed.).

Washington, DC: American Psychiatric Association.

Amor, D. J.

(2018).

Investigating the child with intellectual disability.

Journal of Pediatrics and Child Health, 54(10), 1154–1158.

https://doi.org/10.1111/jpc.14202 Beddows, N., & Brooks, R. (2016).

Inappropriate sexual behaviour in adolescents with autism spectrum disorder: What education is recommended and why.

Early Intervention in Psychiatry, 10(4), 282–289.


https://doi.org/10.1111/eip.12265 Cheak-Zamora, N. C., Teti, M., Maurer-Batjer, A., O’Connor, K. V., & Randolph, J. K. (2019).

Sexual and Relationship Interest, Knowledge, and Experiences Among Adolescents and Young Adults with Autism Spectrum Disorder.

Archives of Sexual Behavior, 48(8), 2605–2615.

https://doi.org/10.1007/s10508-019-1445-2 Corona, L. L., Fox, S. A., Christodulu, K. V., & Worlock, J.

A.

(2015).
A.

(2015).

Providing Education on Sexuality and Relationships to Adolescents with Autism Spectrum Disorder and Their Parents.

Sexuality and Disability, 34(2), 199–214.

https://doi.org/10.1007/s11195-015-9424-6 Cummins, C., Pellicano, E., & Crane, L. (2020).

Supporting Minimally Verbal Autistic Girls with Intellectual Developmental disabilities Through Puberty: Perspectives of Parents and Educators.

Journal of Autism and Developmental Disorders, 50(7), 2439–2448.
https://doi.org/10.1007/s10803-018-3782-8 Curtis, A.

(2017).

Why Sex Education Matters for Adolescents with Autism Spectrum Disorder.

American Journal of Nursing, 117(6), 11. https://doi.org/10.1097/01.naj.0000520233.91525.1f Delobel-Ayoub, M., Saemundsen, E., Gissler, M., Ego, A., Moilanen, I., Ebeling, H., Rafnsson, V., Klapouszczak, D., Thorsteinsson, E., Arnaldsdóttir, K. M., Roge, B., SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 23 Arnaud, C., & Schendel, D. (2020).
Prevalence of Autism Spectrum Disorder in 7–9- Year-Old Children in Denmark, Finland, France and Iceland: A Population-Based Registries Approach Within the ASDEU Project.

Journal of Autism and Developmental Disorders, 50(3), 949–959.

https://doi.org/10.1007/s10803-019- 04328-y 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 Hannah, L. A., & Stagg, S. D. (2016).
Experiences of Sex Education and Sexual Awareness in Young Adults with Autism Spectrum Disorder.

Journal of Autism and Developmental Disorders 46(12), 3678–3687.

https://doi.org/10.1007/s10803-016- 2906-2 Harvey, M., May, M., & Kennedy, C. (2004).

Nonconcurrent Multiple Baseline Designs and the Evaluation of Educational Systems.

Journal of Behavioral Education, 13, 267– 276. https://doi.org/10.1023/B:JOBE.0000044735.51022.5d Jónsdóttir, M. (2010).
Kynverund fólks með þroskahömlun: Rannsókn um kynfræðslu [MA ritgerð, Háskóli Íslands].

https://skemman.is/handle/1946/5359 Jónsdóttir, S. L. & Sæmundsen, E. (2014).

Litróf einhverfunnar.

Kilja.

Jónsdóttir, S. L., Sæmundsen, E., Guðmundsdóttir, S., Haraldsdóttir, G. S., Pálsdóttir, Á. H., & Rafnsson, V. (2020).

Implementing an early detection program for autism in primary healthcare: Screening, education of healthcare professionals, referrals for diagnostic evaluation, and early intervention.
Research in Autism Spectrum Disorders, 77, 101616. https://doi.org/10.1016/j.rasd.2020.101616 SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 24 MacKenzie, A.

(2018).

Prejudicial stereotypes and testimonial injustice: Autism, sexuality and sex education.

International Journal of Educational Research, 89, 110–118.

https://doi.org/10.1016/j.ijer.2017.10.007 McLay, L., Carnett, A., Tyler-Merrick, G., & van der Meer, L. (2015).
A Systematic Review of Interventions for Inappropriate Sexual Behavior of Children and Adolescents with Developmental Developmental disabilities.

Review Journal of Autism and Developmental Disorders, 2(4), 357–373.

https://doi.org/10.1007/s40489-015-0058-5 Memarian, A., & Mehrpisheh, S. (2015).

Therapeutic and Ethical Dilemma of Puberty and Menstruation Problems in an Intellectually Disabled (Autistic) Female: a Case Report and review of the literature.

Acta Medica Iranica, 53(10), 663-666.


Menon, P., & Sivakami, M. (2019).

Exploring Parental Perceptions and Concerns About Sexuality and Reproductive Health of Their Child With Intellectual and Developmental Disability (IDD) in Mumbai.

Frontiers in Sociology, 4. https://doi.org/10.3389/fsoc.2019.00058 Michielsen, K., & Brockschmid, L. (2020).

Barriers to sexuality education for children and young people with developmental disabilities in the WHO European region: A scoping review.
Sex Education, 21(6), 1-19. https://doi.org/10.1080/14681811.2020.1851181 Nelson, B., Pettersson.

K. O., & Emmelin, M. (2020).

Experiences of teaching sexual and reproductive health to students with intellectual developmental disabilities.

Sex education, 20(4), 398-412. https://doi.org/10.1080/14681811.2019.1707652 Pryde, R., & Jahoda, A.

(2018).

A qualitative study of mothers’ experiences of supporting the sexual development of their sons with autism and an accompanying intellectual disability.
International Journal of Developmental Developmental disabilities, 64(3), 166– 174. https://doi.org/10.1080/20473869.2018.1446704 SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 25 Schaafsma, D., Kok, G., Stoffelen, J. M. T., & Curfs, L. M. G. (2015).

Identifying Effective Methods for Teaching Sex Education to Individuals With Intellectual Developmental disabilities: A Systematic Review.

The Journal of Sex Research, 52(4), 412–432.


https://doi.org/10.1080/00224499.2014.919373 Schaafsma, D., Stoffelen, J. M. T., Kok, G., & Curfs, L. M. G. (2013).

Exploring the Development of Existing Sex Education Programmes for People with Intellectual Developmental disabilities: An Intervention Mapping Approach.

Journal of Applied Research in Intellectual Developmental disabilities, 26(2), 157–166.

https://doi.org/10.1111/jar.12017 Solomon, D., Pantalone, D. W., & Faja, S. (2019).
Autism and Adult Sex Education: A Literature Review Using the Information–Motivation–Behavioral Skills Framework.

Sexuality and Disability, 37(3), 339–351.

https://doi.org/10.1007/s11195-019-09591- 6 Talbot, T., & Langdon, P. (2020).

General Sexual Knowledge Questionnaire.

https://doi.org/10.13140/RG.2.2.16308.60804 Travers, J., & Tincani, M. (2010).

Sexuality Education for Individuals with Autism Spectrum Disorders: Critical Issues and Decision Making Guidelines.
Education and Training in Autism and Developmental Developmental disabilities, 45, 284–293.

Urbano, M. R., Hartmann, K., Deutsch, S. I., Polychronopoulos, G. M. B., & Dorbin, V. (2013).

Relationships, Sexuality, and Intimacy in Autism Spectrum Disorders.

In Recent Advances in Autism Spectrum Disorders, 1, 427-450. https://doi.org/10.5772/53954 World Health Organization.

(n.d.).

Sexual health.


Retrieved April 6th, 2021, from https://www.who.int/health-topics/sexual-health#tab=tab_1 SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 26 World Health Organization.

(2017).

Definition: Intellectual Disability.

Retrieved November 7th, 2021, from https://www.euro.who.int/en/health-topics/noncommunicable- diseases/mental-health/news/news/2010/15/childrens-right-to-family-life/definition- intellectual-disability World Health Organization.

(2019).
(2019).

Autism spectrum disorders.
Retrieved November 7th, 2021, from https://www.who.int/news-room/fact-sheets/detail/autism-spectrum- disorders SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 27 Appendix 1 – Example of the questionnaire – The body Appendix SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 28 Appendix 2 – Example of the questionnaire – Private and public places SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 29 Appendix 3 – Pictures from the questionnaire – The body SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 30 Appendix 4 – Pictures from the questionnaire – Private and public places SEX EDUCATION FOR CHILDREN WITH DEVELOPMENTAL DISABILITIES 31 Appendix 5 – Pictures from the questionnaire – Puberty for boys