Adolescent boys with an Autism Spectrum Disorder about their sexuality: a mixed methods approach.

Sexuality is a normative part of development in adolescence. Recent scientific
publications on sexuality reflect a shift from a focus on sexual risk (STDs,
early pregnancy, relation between adolescent sexual behaviour and delinquent
behaviours) to a positive view on sexuality (sexual well-being, selfhood and
experience). However, there is a dearth in research on sexuality in adults and
especially on adolescents with Autism Spectrum Disorders (ASDs). Moreover, case
reports and the study of Hellemans and colleagues showed that adolescent with
ASD also experience or demonstrate problems in their sexual functioning. The
paradigm shift towards a positive view on sexuality in people with ASD has only
started recently.
Between 2012 and 2013, the authors of this research proposal conducted an
explorative study on self-reported sexual experience in a group of high
functioning (TIQ>70) adolescent boys (age 15 to 17) with ASD (Autistic Disorder
or Asperger*s Disorder). The results of the study demonstrated major
similarities concerning the experience of different solo and partnered sexual
behaviours between boys with and without ASD. The age of sexual debut regarding
solo and different partnered sexual behaviours were alike in the ASD
participants and controls. These were the first self-reported data on sexual
experience in adolescents with ASDs. The findings of this study refuted the
hypothesis based on earlier research in adults or studies based on parent and
caregiver report. However, different participating boys with ASD made remarks
or asked questions during data collection reflecting specific needs for
information and support related to sexuality.

This study aims to gain more insight in the sexual development of adolescent
boys with ASDs.The main research question is: How do high functioning boys with
ASD develop sexually? The main research question is worked out in 2 parts/
1. Which sexual experience and opinions related to sexuality are reported by
boys with ASD during their adolescent development?
2. How do adolescent boys with ASD experience their sexuality?

This research project consists of 2 parts: 1) a longitudinal follow-up of the
group of adolescent boys with ASD that participated in the earlier study of
Dewinter and colleagues (2014), 2) an in depth qualitative study in a small
subgroup.
In the follow-up study the aim is to explore the sexual experience and
attitudes of the group of boys that participated in the study of Dewinter and
colleagues (2014) during their adolescent development at two moments (2014 and
2015). Fourty-three of the 50 boys that participated in the first study agreed
to be contacted again. The data of these boys will be compared over time and to
data of a matched control group form the study of de Graaf and colleagues
(2012). There are no longitudinal data available of the control group but a
comparison is made with a group matched on age, ethnicity, educational level
and region. The study is of explorative nature since no longitudinal data on
sexuality in adolescent boys with ASDs exist.
The qualitative study is focused on the lived experience of the phenomenon of
sexuality by boys with ASDs. An Interpretative Phenomenological Analysis (Smith
et al., 2009) approach is selected using semi-structured interviews to collect
data in eight boys with ASD. An inductive approach is used to analyse
experiences of these boys based on their stories. The results of this study are
not meant to be generalized in terms of prevalence of specific experiences or
behaviors however these can add to a deeper understanding of the phenomenon
sexuality in adolescent boys with ASD.

The burden for the participants depends on their participation in one or both
parts of the study.
- The boys that participate in the follow-up study will be asked to complete
the online questionnaire (SO25II) on 2 moments. It takes 20 minutes on average
to complete the questionnaire. Completing the questions can be done at home, in
the child and adolescent department of GGzE or on any other suitable location.
- The eight boys that participate in the IPA-study wil be interviewed
individually for about 60 minutes. These boys will also be asked to participate
in the follow-up study, resulting in a burden of a total of 100 minutes.

There are no risks associated with participation in this study.