Affectivity and Sexuality in Adolescents with Autism Spectrum Disorder from the Perspective of Education and Healthcare Professionals: A Qualitative Study
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Design
2.2. Setting and Particpants
2.3. Data Collection
2.4. Information Analysis
2.5. Ethical Considerations
3. Results
3.1. Experiences of Education Professionals
3.1.1. Family Coping
E5 ‘And that’s the difficulty a lot of families have, and they keep putting it off, and by the time we in schools are already dealing with the problem left, right and centre... it’s already a need and they have a lot of pent-up, nervous energy, they have to learn about it. So, you just have to work on it with the family. Many times, we make it something official from the school because they really struggle to wrap their head around the issue.’
E3 ‘Because you can give them resources, but emotionally, if they’re not able to support their child in this process, they don’t [...]. Parents surprise themselves, they really struggle, like, we’ll cross that bridge when we come to it...’
E5 ‘The most interesting thing about the families of students at special schools is that they’re overprotective. Their kids are kept in a bubble, and when that inevitable push comes during adolescence or preadolescence, the family can’t accept it at first.’
E1 ‘sexuality doesn’t exist... when the first problems or maladaptive behaviours come up, or things that haven’t been addressed, the alarm bells start ringing.’
E5 ‘the “de-education” in this sense comes directly from the families. This is one of the most concerning factors because there are people, there are young people who can be easily victimised, which makes them vulnerable.’
E1 ‘then what they do is make them afraid, put limits on them, start forbidding things...’
E3 ‘for them it’s awkward, so it helps having a sibling in the family, but if the mother or father has to step in it becomes even more awkward, and if the parent doesn’t understand the dynamics, then it can be difficult to handle.’
3.1.2. Training for Education Professionals
E5 ‘The training was quite general; it didn’t cover any particular profile of students with ASD.’
E1 ‘I don’t have any training on this topic and I’ve never been offered training on sexuality among students with ASD.’
E4 ‘to be able to do certain things that should be soft skills within a primary or secondary curriculum, adapted or not, because it’s a part of being human, but it’s quite a... neglected topic.’
E1 ‘specific sexual behavioural patterns, how to handle them, and obviously, how to interpret both our role and the family’s role in this whole process.’
3.1.3. Curricular and Collaborative Strategies
E1 ‘our school’s curriculum involves the families in affectivity and sexuality education. We periodically find resources to give talks on these topics.’
E5 ‘with families, we also have quite low participation, and we really struggle to promote talks, whether about sex-affectivity or any other topic, so we also have to take advantage of our trimestral tutorial sessions.’
E3 ‘when we’ve had a dedicated school nurse with previous experience, it’s much more effective than what we could have done as teachers [...], so that’s why we also need support from medical professionals to guide families.’
3.1.4. Profile of Adolescents with ASD with Regards to Their Affective/Sexual Development
E2 ‘in a playground I came across a boy, who started to masturbate as he approached me.’
E1 ‘for example, complex social situations with classmates, uncontrollable verbal outbursts... they don’t know where the limits are.’
E1 ‘the relationships that one boy with high-functioning ASD had with his partners repeatedly followed a pattern of excessive possessiveness.’
E2 ‘Four days after the sweet falling in love stage the possessiveness comes out, you know? The role of the dominated woman that almost all of the female students played.’
E4 ‘Children with ASD don’t communicate with one another, and if they do, they don’t do it explicitly... they use another code... on a different wavelength. It’s not your everyday communication.’
E2 ‘they have less autonomy, express mental needs in a more physical way, with more gestures, fidgeting [...], even self-stimulation.’
E2 ‘Physically they know that things are happening to them, but they don’t know what, what to do in response, or how. They also don’t know how to put a name to the feelings and sensations they are having.’
E5 ‘very vulnerable situations compared to others, which are maybe hypersexualised, you know? They [also] have difficulties with decision-making, they can’t choose between one or the other [...], or they feel the need to masturbate but they don’t know when to stop.’
E4 ‘teenagers with easy, unlimited access to the internet, who discover what they find pleasurable or not, and from that, they start building a sexuality that can be harmful.’
E3 ‘when you have closer contact, you sometimes see an excessive consumption of pornography: I’m talking about a student with high-functioning ASD with very sadistic sexual practices a lot of the time.’
E5 ‘we also work a lot with explicit visual supports: who can touch me, which parts other people can touch, which they can’t, all depending on the type of relationship.’
E3 ‘role-plays really worked for us, social scenarios to help anticipate different situations.’
3.2. Perception of Healthcare Professionals
3.2.1. Experiences with the Family
H5 ‘I don’t know much and I don’t want to talk about it, or I’m too scared, or I don’t know. There’s a gap in my knowledge. And... and so I’m bringing them to you.’
H8 ‘It can also happen that we’re all there sitting down and they start to masturbate because they say they feel comfortable.’
H9 ‘various cultural groups are represented here. The care I provide to a young, Romani girl who is going to get married and doesn’t know what a sexual relationship is... [compared to the care I could give] a girl from Morocco, for example, or a local girl.’
H5 ‘If you talk to an African girl, sexuality doesn’t exist. Sexual affectivity doesn’t exist, it’s just a way to procreate.’
H5 ‘Within that same marriage there is abuse that is tolerated for cultural reasons.’
3.2.2. Specialised Training of Healthcare Professionals
H9 ‘because we can assume things, but in reality, we don’t have a lot of real information or literature on this topic, you know?... Neither quality research nor research on this topic.’
H8 ‘to be able to speak with authority and for studies to discuss sexual conduct of individuals with ASD... I mean, there has to be some kind of model to guide professionals in this field, like there are for other situations.’
H8 ‘Sometimes we ask if they have a partner or not, but we don’t ask if they’re sexually active, even though it’s useful data.’
H3 ‘We work with groups of parents on how they can approach the topic and work on it with their children.’
3.2.3. Profile of Adolescents with ASD
H8 ‘they also don’t know much about, nor accept, things like growing hair, for example in boys... The question is, how do we do this right?’
H10 ‘someone says “I like your jumper” and they take that to mean they’re together now.’
H2 ‘[It’s] especially [necessary] to empower them to say no, [as] that’s closely related to mistreatment, abuse...’
H3 ‘Many times they know it’s not right [their behaviour] but they also don’t have the skills or the confidence to explain it, and they end up with bad experiences.’
H1 ‘You can show them how to prevent what could be invasions of privacy or sexual aggression, you know? But you’re always left thinking what would happen outside of a session? In a group at the community centre? What if one day in a shop somewhere...? You just don’t know.’
4. Discussion
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Professional | Sex | Role | Resource |
---|---|---|---|
Education 1 | M | Headteacher and teacher | Special school for 3- to 21-year-olds |
Education 2 | M | Psychologist | Special school for 16- to 21-year-olds |
Education 3 | F | Headteacher | Special school for 3- to 21-year-olds |
Education 4 | F | Headteacher | Special school for 3- to 21-year-olds |
Education 5 | F | Headteacher | Special school for 12- to 21-year-olds |
Education 6 | F | Teacher and academic tutor | Inclusive resource at non-special school Age range: 12–16 years old |
Education 7 | F | Teacher and academic tutor | Inclusive resource at non-special school Age range: 13–16 years old |
Education 8 | M | Teacher | Hospital classroom for 11- to 18-year-olds |
Healthcare 1 | F | Midwife | Primary and hospital care |
Healthcare 2 | M | Psychiatrist 1 | Outpatient clinic |
Healthcare 3 | F | Social worker 1 | Inpatient care |
Healthcare 4 | M | Clinical Psychologist 1 | Inpatient care |
Healthcare 5 | F | Social worker 1 | Outpatient clinic |
Healthcare 6 | F | Psychiatrist 1 | Outpatient clinic |
Healthcare 7 | F | General adult psychiatrist | Outpatient clinic and inpatient care |
Healthcare 8 | F | Psychiatrist 1 | Outpatient clinic |
Healthcare 9 | F | Nurse 1 | Outpatient clinic |
Healthcare 10 | F | Clinical psychologist 1 | Outpatient clinic and inpatient care |
Dimensions | Questions |
---|---|
Family | What questions does the family ask with regards to situations relating to affectivity and sexuality? What problems do care providers encounter when managing the socio-affective needs of young people with ASD? What role does the family play in sex and affective education, and what implications does it have? |
Training | Is there specific professionals training on affectivity and sexuality? Is there refresher training on affective and sexual behaviours when working with individuals with ASD? |
Sex education | Are there programmes or protocols in place to facilitate sex and affective education among these young people? What support systems do you have in place at your centre to facilitate this type of health education? |
Sexuality of individuals with ASD | Do you think that young people with ASD behave differently on an affective and/or sexual level compared to other adolescent groups? |
Theme | Category |
---|---|
Family coping | -Family beliefs -Family difficulties -Family denial -Fear -Role of siblings |
Training for education professionals | -Training received -Identifying educational needs |
Curricular and collaborative strategies | -Cross-sectional and curriculum-integrated area -Coordination with families -Multidisciplinary collaboration with healthcare staff |
Profile of adolescents with ASD with regards to their affective/sexual development | -Inappropriate social behaviour -Risky behaviour -Communication problems -Problematic and dysfunctional sexuality -Acquiring knowledge |
Theme | Category |
---|---|
Experiences with the family | -Types of consultations -Cultural diversity |
Specialised training of healthcare professionals | -Training -Sexual/affective exploration during consultations |
Profile of adolescents with ASD | -Lack of knowledge among individuals -Interpretation of relationships -Vulnerability |
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Torralbas-Ortega, J.; Valls-Ibáñez, V.; Roca, J.; Sastre-Rus, M.; Campoy-Guerrero, C.; Sala-Corbinos, D.; Sánchez-Fernández, M. Affectivity and Sexuality in Adolescents with Autism Spectrum Disorder from the Perspective of Education and Healthcare Professionals: A Qualitative Study. Int. J. Environ. Res. Public Health 2023, 20, 2497. https://doi.org/10.3390/ijerph20032497
Torralbas-Ortega J, Valls-Ibáñez V, Roca J, Sastre-Rus M, Campoy-Guerrero C, Sala-Corbinos D, Sánchez-Fernández M. Affectivity and Sexuality in Adolescents with Autism Spectrum Disorder from the Perspective of Education and Healthcare Professionals: A Qualitative Study. International Journal of Environmental Research and Public Health. 2023; 20(3):2497. https://doi.org/10.3390/ijerph20032497
Chicago/Turabian StyleTorralbas-Ortega, Jordi, Victoria Valls-Ibáñez, Judith Roca, Meritxell Sastre-Rus, Carme Campoy-Guerrero, Dolores Sala-Corbinos, and María Sánchez-Fernández. 2023. "Affectivity and Sexuality in Adolescents with Autism Spectrum Disorder from the Perspective of Education and Healthcare Professionals: A Qualitative Study" International Journal of Environmental Research and Public Health 20, no. 3: 2497. https://doi.org/10.3390/ijerph20032497
APA StyleTorralbas-Ortega, J., Valls-Ibáñez, V., Roca, J., Sastre-Rus, M., Campoy-Guerrero, C., Sala-Corbinos, D., & Sánchez-Fernández, M. (2023). Affectivity and Sexuality in Adolescents with Autism Spectrum Disorder from the Perspective of Education and Healthcare Professionals: A Qualitative Study. International Journal of Environmental Research and Public Health, 20(3), 2497. https://doi.org/10.3390/ijerph20032497