Sexuality in high-functioning boys with autism .

The amount of research publications on the development of the sexual and
relational functioning of people with autism is limited but growing. The
available results of research learn us that a major part of the people with
autism show an interest in sexuality, display sexual behaviours and are
interested in person-orientated sexual activities and relationships. On the
other hand it seems that there are adolescents who reacted anxious on the
physical changes during puberty, that there*s only a minority who has
experience with a relationship and sexual contact and that some people with
autism are frustrated because of this. Parents and caregivers of people with
autism report inappropriate sexual behaviours (e.g. a lack of privacy, touching
others without consent), distinct behaviour such as the use of objects during
masturbation and bizarre sexual preferences. There seems to be growing
attention on sex-education and the way it should be delivered.
The existing research offers important insights but shows inevitable
shortcomings. Challenges for future research are to include enough people to
obtain statistical power. This population should not only be living in
residential facilities, but should represent the population of people with HFA.
Other important aspects: obtain data from an adequate comparison-group, valid
instruments to diagnose autism and to use multiple information sources.
Research based on direct reporting by adolescents and young adults is very
limited (Mehzabin & Stokes, 2011) but important, because of the assumed greater
complinace to privacy-rules by the HFA-population. Apart from this, direct
reporting by HFA-adolescents and young adults will offer the opportunity to
compare with data form the general population ('sex under 25'years II' by RNG).

This study focuses on collecting data on knowledge, attitudes, skills,
experiences and needs related to sexuality and relational functioning in
high-functioning Dutch boys with autism between 15 and 18 years old (up to and
including 17). Data are collected by asking the boys and their parents to
complete a questionnairre. To improve the conclusions on this data, they will
be compared with data collected in the general population during a study of the
Rutgers-Nisso-group. The objective is to clarify the influence of autism on the
relational and sexual functioning, and on influencing factors.

This study is cross-sectional with one moment for data-gathering for each
participant. Data are gathered using a questionnairre and an interview in 4
centers in the northern part of Brabant, the Netherlands.
By using this computer-based questionnairre ('seks onder je 25ste II': the
second version of 'sex before 25') in our sample of boys with HFA between the
age of 15 and 18 years old, comparison will be possible with the results of a
group without autism in the same cultural context. The questionnairre is
hierarchiccaly constructed, in a way that there are first questions to screen
for behaviours that a youngster recognizes. Only those behaviours are
questioned further. The questions concern experiences, behaviours, thoughts and
wishes about sexuality and relationships. Apart from this, the parents of the
boys will be asked to complete a questionnairre (Sexual Behaviour Scale - Dutch
Version) and some supplementary questions. The SBS is developed earlier to
investigate the social and sexual functioning of children with autism and their
need for specialized sex-education. The additional questions concern sexual
behaviours and are meant to compare with the adolescent-data. In this way it
will be possible to compare information from multiple sources and to compare
the results of the HFA-group with the results of the larger survey in the
normal population.

Inclusion is possible based on the following data:
- ADI-R conducted with the parents (max. 180 minutes)
- ADOS conducted with the youngster (within 6 months before inclusion, duration
60 minutes) and an intelligencetest (WISC-III or WAIS-III) (120 minutes)
These instruments are part of the clinial guidelines for diagnosing autism and
are expected to be present. If not, they can be done for this project.
The time needed to complete this interview, test and observation can be a
burden for the adolescent and/or his parents, but they include no risks.
The actual research-instruments are
- an web-based questionnaire to be completed by the adolescent (45 - 60 min)
(seks onder je 2ste II)
- a questionairre to be completed by the parents (SBS-Dutch version and
additional questions).
The time needed to complete this interview, test and observation can be a
burden (time) for the adolescent and/or his parents, but they include no risks.
Major developments on the domain of sexuality and relational functioning take
places during adolescence. Direct questionning of adolescents and their parents
is relevant in the HFA-group because of the assumed greater adherence to
privacy-rules in this group. Comparison of the information of the parents and
the information of their sons will clarify this. Direct reports are also the
best way to explore knowledge, expectations and attitudes of the adolescents.
Burdens are limited to the time needed to complete the questionairres and
interviews. The are no risks related to this research.