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Abstract

Introduction Adolescents with intellectual and/or developmental disabilities (IDD) are at high risk for sexual exploitation, yet there is a paucity of research on their romantic relationships. The objectives of this study were to examine the romantic understanding and experiences of youth with IDD. Methods Thirty‐one adolescents (16–19 years; 21 males and 10 females) with IDD (12 participants with additional diagnosis of ASD) were recruited from a community health clinic. Individual interviews and questionnaires assessed cross‐sectionally these youths’: (1) romantic conceptualizations; (2) romantic awareness (knowledge of: romantic relationships, sexual behaviours, initiating relationships); (3) involvement; (4) social competence; and (5) expectations for autonomy. Parent perspectives on these topics were also captured through questionnaires. Results While 85% reported an immediate desire for a romantic relationship, only 35% were currently in a relationship. Qualitative findings indicated that 14% of youth were unable to differentiate between a romantic relationship and a friendship. Among those who could make this distinction, romantic relationships were conceptualized as serious, commitment for life, and primarily for companionship. Adolescents with ASD, compared to those without ASD, showed weaker social competence and lower romantic awareness. Parents were adolescents’ primary source of information about relationships. Finally, parents and adolescents differed in their perception of the age at which they were ready to date. Conclusions This study contributes to our understanding of the romantic experiences of youth with IDD. Prevention efforts focused on education may be important to help ensure these youth develop safe and healthy relationships.
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Journal of Adolescence
journal homepage: www.elsevier.com/locate/adolescence
Dating and romantic relationships of adolescents with intellectual
and developmental disabilities
Marina Heifetz
a,
, Johanna Lake
a
, Jonathan Weiss
a
, Barry Isaacs
b
, Jennifer Connolly
a
a
York University, 4700, Keele Street, Toronto, Ontario, M3J 1P3, Canada
b
Surrey Place Centre, 2 Surrey Pl, Toronto, Ontario, M5S 2C2, Canada
ARTICLE INFO
Keywords:
Developmental disabilities
Intellectual disability
Adolescence
Romantic relationships
Romantic conceptualizations
Qualitative research
ABSTRACT
Introduction: Adolescents with intellectual and/or developmental disabilities (IDD) are at high
risk for sexual exploitation, yet there is a paucity of research on their romantic relationships. The
objectives of this study were to examine the romantic understanding and experiences of youth
with IDD.
Methods: Thirty-one adolescents (1619 years; 21 males and 10 females) with IDD (12 partici-
pants with additional diagnosis of ASD) were recruited from a community health clinic.
Individual interviews and questionnaires assessed cross-sectionally these youths: (1) romantic
conceptualizations; (2) romantic awareness (knowledge of: romantic relationships, sexual be-
haviours, initiating relationships); (3) involvement; (4) social competence; and (5) expectations
for autonomy. Parent perspectives on these topics were also captured through questionnaires.
Results: While 85% reported an immediate desire for a romantic relationship, only 35% were
currently in a relationship. Qualitative ndings indicated that 14% of youth were unable to
dierentiate between a romantic relationship and a friendship. Among those who could make
this distinction, romantic relationships were conceptualized as serious, commitment for life, and
primarily for companionship. Adolescents with ASD, compared to those without ASD, showed
weaker social competence and lower romantic awareness. Parents were adolescentsprimary
source of information about relationships. Finally, parents and adolescents diered in their
perception of the age at which they were ready to date.
Conclusions: This study contributes to our understanding of the romantic experiences of youth
with IDD. Prevention eorts focused on education may be important to help ensure these youth
develop safe and healthy relationships.
1. Introduction
Research on romantic development of typically developing adolescents is an established and important area for socio-emotional
development and mental health, but there remains a substantial gap in the eld of romantic relationships among adolescents with
intellectual and/or developmental disabilities (IDD). Adolescents with IDD demonstrate limited knowledge of sex and sexual risks
(Baines, Emerson, Robertson, & Hatton, 2018;Brown-Lavoie, Viecili, & Weiss, 2014;Cheng & Udry, 2005;Hannah & Stagg, 2016),
and those with an additional Autism Spectrum Disorder (ASD) diagnosis may also exhibit poor social competence (i.e., inferring
social information; Solish, Perry, & Minnes, 2010), which may further impact their romantic development (Dewinter, Van Parys,
https://doi.org/10.1016/j.adolescence.2019.12.011
Received 2 May 2019; Received in revised form 11 November 2019; Accepted 19 December 2019
*
Corresponding author. Boomerang Health 9401 Jane Street, Suite 211, Vaughan, Ontario, L6A 4H7, Canada.
E-mail address: marinaheifetz@gmail.com (M. Heifetz).
Journal of Adolescence 79 (2020) 39–48Available online 31 December 20190140-1971/ © 2019 The Foundation for Professionals in Services for Adolescents. Published by Elsevier Ltd. All rights reserved.T
... . In fact, clinical research and reports from self-advocates consistently indicate that individuals with ID do experience sexual interest, choose to engage in sexual activity, and desire romantic connections with others. As adolescents, 34% of youth with ID report current participation in a romantic relationship, and 85% desire a romantic relationship in the future (Heifetz et al., 2020). In adulthood, 84% of individuals with ID report past or current participation in a sexual relationship, and 87% desire a sexual relationship in the future (Gil-Llario et al., 2018). ...
... Romantic relationships with others are important attributes of a high quality of life, and individuals with ID express feelings of isolation and loneliness when access to their significant other is denied by caretakers (Turner & Crane, 2016). Adolescents with ID characterize romantic relationships as different from platonic relationships because of their features of companionship and commitment (Heifetz et al., 2020). For all of us, relationships that are "joyful and reciprocal" are associated with thriving, and self-advocates with ID have identified close personal relationships as contributors to feeling fulfilled and included in adulthood (Thompson et al., 2020). ...
Article
Students with intellectual disabilities (ID) have reduced access to sexuality education at school, tasking families with filling the gap. This limited access contributes to persistent health inequities, psychosocial risk, and reduced self‐determination for individuals with ID. To understand the resources that families may encounter when filling this service gap, a naturalistic scoping review and content analysis of ID‐specific sexual health curricula (SHC) was conducted. This analysis found a limited number of SHC available to family members who may seek them out online, and even fewer SHC designed for the specific needs of family‐led delivery. While curricula identified in this study generally include the minimum recommended content areas for comprehensive sexuality education, they less frequently provide actionable guidelines for caregivers tasked with adapting teaching practices and outcomes assessment to the diverse profiles of students with ID. By understanding the SHC available to families of students with ID, school psychologists can improve their partnerships with families, disseminate needed resources, implement collaborative intervention practices, and advocate for inclusive sexuality education practices.
... Moreover, individuals with ASD may find it particularly challenging to establish an affective and sexual relationship, primarily because they may not acquire social skills incidentally [4]. Heifetz et al. [5] found that 85% of people with ASD desired to have a romantic relationship, but fewer than 50% are in one. In addition, they have difficulty detecting the feelings and needs of their partner, which affects the quality of the romantic relationship [6]. ...
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Purpose People with autism spectrum disorder (ASD) require comprehensive sexuality and relationship education (SRE) for healthy sexual development, which refers to the lifelong process of acquiring knowledge, attitudes, and behaviors around sexual health that foster well-being and personal fulfillment. In this emerging research field, our aim is to consolidate scientific literature findings and gain a clear understanding of existing gaps. We plan to achieve this by conducting a systematic integrative review, analyzing the development and design process of interventions for individuals with ASD or Developmental Disorder up to February 2023. Furthermore, we place significant emphasis on evaluating the effectiveness of programs for both participants and their families. This comprehensive approach allows us to analyze the overall impact of interventions and provide a more complete understanding of their effectiveness in practical contexts. Methods: A systematic search was conducted on seven databases: ProQuest Dissertation, Scopus, Web of Science, Dialnet, ERIC, PsycInfo, and Pubmed. 20 articles met the inclusion criteria (1 randomized controlled trial, 7 mixed methods, and 12 non-randomized). The methodological quality of the studies was assessed with Mixed Methods Appraisal Tool (MMAT), version 2018. Results: The low quality of the studies does not allow us to confirm that the programs are effective in increasing the level of knowledge, although most of the studies reflect positive results that suggest that the participants have benefited from the training received. Conclusions: This review has allowed us to discover the existing deficiencies in this field, as well as to detect how they could be improved.
... The concept of "cursing" is not directly linked to sexuality by nature and the expression "going steady" is an outdated one, meaning "(…) continuous dating of the same person over an extended period to the exclusion of all other persons'' (Schnepp, 1960, p. 240). Although the topic of dating may be crucial in the development of sex education programs for people with ID (Healy et al., 2009;Heifetz et al., 2020), the terminology "going steady" may have been what persuaded participants to identify this item for "definite inclusion" significantly less often than in the past. Specifically, meeting and getting to know someone are now most popularly done online and through dating applications (Rosenfield & Thomas, 2012), and the language used to refer to dating and being in a relationship has shifted over time. ...
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Very little is known about the socio-sexual knowledge and attitudes of adults with intellectual disabilities (ID) and tools to measure these constructs are limited. The purpose of the current study was to compare areas of importance in socio-sexual assessment for individuals with ID with those reported approximately twenty (Griffiths & Lunsky, 2000) and forty (Wish et al., 1980) years ago. A total of 42 professionals in the field, including psychologists, clinicians, and staff members who work with individuals with ID completed a questionnaire where they were asked to rate their perceived importance of topics to be included in socio-sexual assessment for individuals with ID. Changes in the importance of topics between years are explored and explained in relation to existing literature on issues of sexuality in society, specifically for individuals with ID. In overall ratings, results suggest that some topics remain valued across years such as inappropriate physical contact, intercourse, body parts, and sexually transmitted infections. Certain changes between years appear to reflect a general increase in the acceptance and understanding of the sexuality of individuals with ID. For instance, topics of sexual orientation, birth control, and adult movies/literature appear to be of much greater importance in 2020. Ultimately, the comparison of topics of importance between years provides an up-to-date portrait of the necessary components of socio-sexual assessment for individuals with ID. The implications of this work highlight that an update in assessment can lead to more current understandings of the needs of this population as well as allow for more tailored approaches to sexual education.
... This raises further concerns and requires further urgent research not just for the Lac but with regards to Lac with a NDD. Children with ASD and ADHD can frequently find difficulties in social communication and developing healthy and safe relationships (Heifetz et al, 2020). Some find challenges in interpreting what is a friendship or a romantic relationship which can be easily manipulated into something riskier placing these children at even more risk (Brown-Lavoie et al, 2014, Brown et al., 2017b. ...
... In the domain of interpersonal relations, most adults with DS were dating and planning to get married while others desired friendships, intimate relationships and becoming a parent, yet caregivers were concerned if adults with DS understood what is involved in having relationships and expressed their own fears. A study with people with IDD revealed that 85% wanted a romantic relationship whereas only 35% were in one [110] linking to societal perceptions of disabled people being perceived as 'asexual' [111]. Research shows that young people with DS face challenges when participating in social roles such as having relationships and community compared to daily activities [112]. ...
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