Sexuality and personal relationships for people with an intellectual disability. Part I: service-user perspectives.
Adults with ID know their sexual rights; staff discomfort, not lack of knowledge, shuts them down.
01Research in Context
What this study did
Lancioni et al. (2009) talked to the adults with intellectual disability. They asked how the adults felt about dating, sex, and marriage.
The team used long interviews and small groups. All talks happened where the adults lived or went to day programs.
What they found
Every adult knew they had the right to love and to say yes or no to sex.
Still, they said staff and family often say “you can’t” or “that’s not safe.” These attitudes blocked dates more than any rule book.
Adults who got sex-ed classes later in life wished they had them sooner. They said classes helped them feel proud, not scared.
How this fits with other research
Goodwin et al. (2012) asked staff about active ageing. Staff wanted older adults with ID to have fun, but still pushed group plans instead of personal choice. Both studies show staff mean well yet limit choice.
Bowen et al. (2012) gave surveys to health staff. Workers who saw adults with ID every day held warmer views than float staff. Lancioni et al. (2009) heard the same from the user side: familiar staff = more freedom.
Hithersay et al. (2014) hunted for carer-led health programs and found none that work. Their empty list matches E et al.’s story: no one trains carers how to talk about sex, so they stay silent.
Why it matters
Your attitude is the gate. If you blush, change the subject, or say “we’ll talk later,” the client hears “never.” Start by asking, “What do you want in a relationship?” Then listen. One open question can replace a whole policy manual.
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02At a glance
03Original abstract
BACKGROUND: Despite a recent ideological shift towards the recognition of sexual autonomy for people with an intellectual disability (ID), there are continuing social and cultural barriers to sexual expression. Part I of the current two-part study assessed the sexual knowledge, experiences and aspirations of service users through focus groups and also examined their perceptions of impediments to achieving sexual autonomy. METHOD: Thirty-two participants (20 male, 12 female) attending an ID service participated in focus groups delineated by gender and age group (13-17 years; 18-30 years; 31+ years). RESULTS: Analysis of the focus groups showed that service users, especially those over the age of 18 years, had an understanding of their sexual rights but also identified a number of social and cultural barriers that they felt prevent them from achieving sexual autonomy. Those under the age of 18 years had only rudimentary knowledge of sexuality issues, for example pregnancy and sexual anatomy, but aspired to relationships and marriage similar to those over the age of 18 years. Family and staff attitudes appeared to be very influential in the views of respondents. All service users had received some form of sex education, although the benefits of such education appeared most enduring for those over 18 years. CONCLUSION: Service users had an understanding of their sexual rights and the social and environmental barriers that prevent them from fulfilling their rights. The provision of sex education training and promotion of positive attitudes towards appropriate sexual expression is critical to the realization of sexual autonomy for people with an ID.
Journal of intellectual disability research : JIDR, 2009 · doi:10.1111/j.1365-2788.2009.01203.x