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Ciência & Saúde Coletiva

Print version ISSN 1413-8123On-line version ISSN 1678-4561

Ciênc. saúde coletiva vol.26 no.2 Rio de Janeiro Feb. 2021  Epub Feb 12, 2021

http://dx.doi.org/10.1590/1413-81232021262.40792020 

ARTICLE

“I am not a blue angel”: Sexuality from the perspective of autistic adolescentes

Aline Veras Morais Brilhante1 
http://orcid.org/0000-0002-3925-4898

Leila Maria de Andrade Filgueira1 
http://orcid.org/0000-0002-2210-4498

Samuel Verter Marinho Uchôa Lopes1 
http://orcid.org/0000-0002-1231-7051

Nathalie Barreto Saraiva Vilar1 
http://orcid.org/0000-0003-0512-630X

Lívia Rocha Mesquita Nóbrega1 
http://orcid.org/0000-0002-5077-5723

Ana Juarina Magalhães Verissimo Pouchain1 
http://orcid.org/0000-0002-4713-4626

Luiz Carlos Gabriele Sucupira1 
http://orcid.org/0000-0003-1680-601X

1Programa de Pós-Graduação em Saúde Coletiva, Universidade de Fortaleza. Av. Washington Soares 1321/S-1, Edson Queiroz. 60811-905 Fortaleza CE Brasil. alineveras@unifor.br


Abstract

Despite the difficulties in living their sexualities, the sexual education of autistic people is often neglected. In this sense, this research aims to identify autistic people’s demands on their sexualities, in line with the neurodiversity paradigm. This qualitative research was carried out from September 2017 to October 2018, with 14 autistic children aged 15 to 17 enrolled in regular schools. Data were collected by semi-structured interviews and analyzed according to the thematic content analysis. Two analytical categories were identified: “discursive processes and the ‘blue angel’ imagery”; and “diversity in diversity: the sexuality of autistic people as singular processes”. The results show that, while autistic people grow physically and sexually according to the typical development stages, some singularities should not be ignored. However, the construction of false beliefs encourages the denial of autistic people’s sexuality. We can conclude that the establishment of effective actions of sexual education and support to the sexuality of the autistic person requires a paradigmatic change anchored in the social model of disability.

Key words: Sexual education; Sexuality; Autism

Resumo

Apesar das dificuldades enfrentadas na vivência de suas sexualidades, a educação sexual de pessoas autistas costuma ser negligenciada. Neste sentido, esta pesquisa objetiva identificar as demandas de autistas sobre sua sexualidade, alinhando-se ao paradigma da neurodiversidade. Trata-se de uma pesquisa de natureza qualitativa realizada de setembro de 2017 a outubro de 2018, com 14 autistas oralizados, com idades de 15 a 17 anos, matriculados em escolas regulares. A coleta dos dados foi realizada por entrevistas semiestruturadas e avaliadas segundo a análise temática de conteúdo. Identificaram-se 2 categorias analíticas: “processos discursivos e a imagética do ‘anjo azul’” e “diversidade na diversidade: a sexualidade de autistas como processos singulares”. Os resultados que embora pessoas autistas se desenvolvam fisicamente e sexualmente de acordo com os estágios típicos de desenvolvimento, existem singularidades que não deveriam ser ignoradas. Todavia, a construção de falsas crenças fomenta a negação da sexualidade de pessoas autistas. Conclui-se que o estabelecimento de ações efetivas de educação sexual e de suporte à sexualidade da pessoa autista requer uma mudança paradigmática, que ancore-se no modelo social de deficiência.

Palavras-chave: Educação sexual; Sexualidade; Autismo

Introduction

Despite the growing interest of the scientific literature, autism is still a contentious field permeated by divergences and controversies1. Starting from different paradigms, some researchers have explored the psychosexual sphere of autism and stressing the need to analyze it not only from an external perspective (of parents, caregivers, or specialists) but mainly at a personal level2. In this context, it is salutary to expand research that analyzes the sexuality of this population based on subjective experiences2,3. It is particularly interesting to increase scientific production based on a paradigm coined within the autistic community, as is the case with Neurodiversity3.

The shift from the classic psychoanalytic paradigm initiated by Leo Kanner and the advancement of neurosciences culminated in the emergence of multiple autism interpretation models and, consequently, in several therapeutic approaches. Although they are different in their theoretical bases, most approaches are based on behavioral and psychopharmacological therapies, searching for a cure or control of autistic characteristics, including the so-called “inappropriate sexual behaviors”2,4.

The neurodiversity movement emerges, contrasting this perspective. Contrary to what some critics claim, this paradigm recognizes autism as a disability, although it also considers it a neurodiverse condition3. In line with the social model of disability, Neurodiversity’s principal assumption is that all forms of neurological diversity must be respected3,5. Thus, therapies should not seek a cure but focus on maximizing skills, providing socio-emotional support, and promoting strategies in the face of individual and environmental demands6,7. In this context, one of the permanent claims among Neurodiversity activists refers to the autistic people’s right over their body and sexuality3,8, regardless of the level of limitations, refuting the belief that autistic people are asexual or “eternal children”5.

However, regardless of the paradigm, the literature is scarce in research on autistic people’s needs concerning the sexual sphere8. To a large extent, this vacuum is associated with the understanding of disability as incapacity2,6 and the silencing and disqualification of the autistic people’s statements4,8,9. In this sense, this paper aims to analyze the demands of autistic people on their sexuality, in line with the neurodiversity paradigm.

Methods

This qualitative research was conducted with autistic people from September 2017 to October 2018, whose preliminary data were presented at the Eighth Ibero-American Congress on Qualitative Research (CIAIQ)10. Participants were recruited by a public call on social media that gathers autistic people and relatives. Participation in the research was voluntary.

The inclusion criteria were being oralized autistic or using an alternative communication technique that would allow answering the interview. Adolescents under the age of 18 without authorization from those responsible and those with autism who did not have the communication tools to enable the interview were excluded. Fourteen oralized autists, aged between 15 and 17, attended the invitation; eight were male, five were female, and one participant identified himself as neutral gender. It is noteworthy that all were enrolled in regular schools. While oralized, one of the participants eventually used augmentative and alternative communication technologies through a cell phone application, due to selective mutism episodes. This technology was not needed in this research. Nine participants lived in Fortaleza, three in Maracanaú, one in Caucaia, and one in Eusébio, all municipalities in Ceará, Brazil.

Data was collected through semi-structured interviews that addressed the constraints faced by autistic people in experiencing their sexuality and their sexual education demands. The interviews were conducted by the same researcher who, while being the mother of an autistic child, has features that characterize her as part of the Broader Autism Phenotype (BAP)11. This particularity contributed to the establishment of rapport and is a facilitator in the interview process.

Data were analyzed according to thematic content analysis12,13 based on neurodiversity as a theoretical benchmark. The informants were identified by pseudonyms chosen by them to maintain anonymity. The research project was approved by the Research Ethics Committee of the University of Fortaleza.

Results

Two analytical categories were identified: discursive processes and the “blue angel” imagery, and diversity in diversity: the sexuality of autistic people as singular processes.

Discursive processes and the “blue angel” imagery

The difficulty of parents and teachers in recognizing autistic people as sexed people was recurrent in the statements. Informants believe that this resistance is fostered by the introjection of false beliefs about autism. The fallacy that autistic children are eternal children is contested by Elric (16 years):

I am not a child. I have a girlfriend. However, it is still difficult for people to accept this because they want us to be children forever. It is the mental age legend.

Elric, whose girlfriend is also autistic, considers himself to be a person with limited autonomy: he reports restrictions on leaving home without support, difficulties in school adaptation, and sensory processing disorder, which compromise activities of daily living. In bringing up these questions, Elric states:

I know that I have my limitations. However, that doesn’t give anyone the right to stop me from having a girlfriend. Moreover, my family tried this at the beginning. Even today, they treat it as if it were child’s play.

Sakura (17 years) confirms Elric’s criticism of the mental age concept and the infantilization of autistic people, especially those with cognitive impairment:

I get mad when I hear someone say ‘so-and-so has the mental age of a 5-year-old child’. What is implied here is that this person needs to be protected forever. [...] I have friends with cognitive impairment more severe than mine. They have the same desire, but they are limited because society does not allow them to have a right over their body.

Sakura states that there was never any intra-family dialogue on sexuality and that she was interrupted whenever she tried to approach the topic:

I tried to ask. I tried to talk. However, everyone freaks out and can only say that I have no malice for these things because I am innocent. However, my younger sister, who is not autistic, is dating, and nobody says anything. I am not too fond of this story about autism being innocent.

Autistic people’s stereotype of innocence and the denial of sexuality gains imagery based on a metaphorical construction. The expression “blue angel” is widely disseminated to characterize autistic people and acts as a discursive process, standardizing their infantilization and contributing to female autism’s invisibility, as illustrated by Jasmin’s (15 years) statement:

I am not a blue angel. I wasn’t born to be an angel. I’m not asexual. Moreover, I’m a girl. This blue came about because people think autism is more prevalent in boys, and it is not. We, girls, take much longer to get the diagnosis. Moreover, the story of this blue angel makes it even more difficult.

From the same perspective, Kalel (17 years) adds that the “blue angel” imagery contributes to the autistic people’s sexuality denial:

We are people. We desire, feel things, but it is difficult for our parents to understand, perhaps because they were conditioned to look at us as blue angels.

Diversity in diversity: the sexuality of autistic people as singular processes

Our collaborators’ statements show that the experiences and demands of autistic people regarding their sexuality are as diverse as the spectrum. Although Kalel (17 years) is considered a young man with high academic skills, he reports difficulties in socializing:

In my case, I have a hard time dealing with people. I am very strict with my routines, and people tend to dislike me and think that I am not interested in them. I am seen as unsympathetic.

Kalel has a brother two years younger, also autistic with severe autonomy limitations and several associated conditions. Kalel tells us about his brother, who was diagnosed with “classic autism”:

It is different with me and him [...]. People want him to be a child. However, he is 15 years old and has already discovered genital pleasure. Moreover, what can you do? Castrate the boy? See, some people do that. Chemical castration. This is terrible.

Following the narrative line, Kalel reinforces that the right to sexuality of autistic people should be respected regardless of the autonomy level. However, what he observes in his daily life is, on the one hand, the brother’s infantilization, and on the other, the invisibility of his demands:

In my brother’s case, people tend to think that he will always be a child. In his case, the therapist helped my parents understand that sexuality does not need to be experienced in a relationship. [...]. Then she worked with him and my parents the importance of leaving him be, teaching how to live it as long as it was in a private place. However, in my case, nobody thinks they need to do anything.

Kalel also points out that the experience of sexuality and the sexual education of non-oral autistic people are compromised by the lack of investment in augmentative and alternative forms of communication since childhood:

Parents don’t know how to talk about sex, even with non-autistic children. [...] Now, if the autistic person is non-verbal and does not invest in other communication forms, they will restrict the tools for guidance. In my brother’s case, the therapist uses visual cues to explain the routine and everyday things, and it works.

Luke (17 years old), like Kalel, has a brother with severely limited autonomy and cognitive impairment and corroborates the importance of preparing parents for these issues:

the most challenging thing was my parents, especially my mother, understanding that. She kept mumbling that we are children without malice. Then I would laugh. She knows nothing. [...] And I will say, my brother is 11 years old, but I already said that she had to go to therapy to learn to respect his puberty because mine has already been difficult.

The greater need for support, including communication, should not be considered an obstacle for the sexual education of autistic people, as Violet (16 years) points out:

I didn’t speak until I was seven years old. I used pictograms for a while. Today I still have difficulties speaking, as you can see. Moreover, it is not very pleasant for people to think that you have nothing to say because you don’t speak. [...] one cannot ignore the sexuality of autistic people who do not speak. Understanding this and working on it at school, in therapy, and at home is essential [...] to protect people and respect them. It is horrible not to be respected as a person just because you cannot speak or cannot communicate.”

On the other hand, fewer communication hardships do not necessarily reduce sexuality’s demands. Naruto (15 years) has no difficulty in speaking. However, Naruto reports difficulties in understanding social norms, which culminated in stigmatization by his peers. Regarding this aspect, he narrated the following episode:

The teacher seemed confused about my question. Moreover, I just said that I had a hard time letting myself be touched, but I wanted to be touched. She looked at me in amazement and said that I shouldn’t think about these things. However, I didn’t understand why I couldn’t ask this in class if it was a reproductive device class.

After discussing this episode in his therapy and talking to his parents, Naruto reports that he understood that:

I have to be careful because some people can abuse my sincerity. People do not usually deal with these matters well. I understood that, but it doesn’t change how I feel [...]. To make matters worse, I still became the stranger, the weirdo, and it doesn’t help at all.

Unlike Naruto, Sakura refers to the apparent ease of socialization, associated with her ability to perform:

Some of us perform. We learn to imitate people in order to fit into spaces. People who are born women learn to pretend to adapt. That is why it is more challenging to diagnose girls.

The ability to “perform normality” - using her words - did not facilitate Sakura’s relational experience:

I’ve never had a boyfriend. I wanted, I definitely wanted it because I really want to. However, I understood in therapy that I can’t go out saying that because it puts me at risk. However, it turns out that performing normality is not being normal. I have a lot of food selectivity, for example. So, I don’t go out with people to eat so they won’t notice. That kind of thing makes it difficult.

Besides the multiple demands and experiences, Noa (17 years old) brings up the diversity of sexual orientation and gender identity:

I’ve heard: you cannot be trans, you are autistic, and there’s no such thing as trans autism. Of course, there is! Moreover, people freak out when I say that I am not binary.

Noa says the departure from hegemonic social rules makes autistic people more likely to perceive themselves with non-normative gender characteristics than neurotypical ones:

if you think about it, this binary split doesn’t make sense. It’s all construction. We think objective, so these issues don’t weigh so much on us.

Thanus (17 years) defines himself as heteroromantic asexual, for not feeling sexual attraction, but being able to fall in love with other people. He believes that there is a societal resistance to admit different forms of relational experience. However, when this experience is associated with autism, disqualification is justified by disability:

People laugh when I say I’m heteroromantic asexual. They really disqualify. It’s like something a child talks about, and nobody takes it seriously. Yes, it’s the same when you are autistic.

Discussion

Our results corroborate that, although autistic people develop physically and sexually according to the typical development stages, some singularities should not be ignored. The experiences and expressions of the sexuality of autistic people are as diverse as the spectrum14, requiring an adaptive support structure that considers needs, desires, difficulties, and commitments2,14.

However, the results of this research show that singularities are ignored, and autistic people’s sexuality is often silenced15. Literature attributes this attitude to low expectations regarding the possibility of romantic involvement and the fear of stimulating a sexual desire that would not develop spontaneously16. Paradoxically, expressions of sexuality are recognized in autistic people with more significant support needs, with a focus on their social inadequacy17.

It is worth highlighting how the discursive processes are organized to build a unique meaning for the autistic person’s sexuality. The “blue angel” metaphor, criticized by our informants, creates a narrative congruence between a pathologizing disability model and the normative disciplinary society9. In this way, the infantilization of autistic people with the greatest need for support legitimizes the pathologization of their sexualities6,9. Insofar as the limitation attributed exclusively to the condition of disability, one starts with the presumed incapacity, culminating in a limitation of investments6. In contrast, divestment fosters limitation, arresting the person in a vicious circle3,6.

The disqualification of non-normative sexual and gender expressions also appears in the results, in Noa and Thanus reports. However, their stories are not exceptions, and there is growing evidence that autistic people have greater sexual and gender diversity than neurotypical people17,18. Silencing these issues, both in academia and in media elements, at a time when autism gained prominence in television series and programs, corroborates the role of discourses - and silences - in the construction of autism’s social imagery9.

These discursive processes culminate in an essential paradox: the uniformity of neglect through a dichotomous construction. While recognizing that some autistic people need more educational and therapeutic support than others, Neurodiversity refutes the binary that dichotomizes them in high or low functioning3. It is not ignored that some behaviors can expose autistic people to critical situations, making them both victims and potential perpetrators2,9, nor does the Neurodiversity paradigm presuppose the absence of therapeutic support. However, it is assumed that the limitations derive from a mix between subjective and environmental issues3. Thus, therapies must be individualized and based on educational strategies, so that each subject develops the necessary skills to know, control, and explore his/her body6,8.

On the other hand, even autistic individuals with more subtle deficits may experience socializing difficulties and require support, including adaptive sexual education2,3,19. However, the dichotomy between low and high functioning often culminates in neglecting the specific needs of people in this group3.

It is noteworthy that, although our informants had different levels of support needs, this paper shows, as a limitation, the absence of non-oral autistic patients, evidencing a gap to be filled by future studies.

Final considerations

Discussing the hegemonic metaphorical framework of autism allows us to rethink how these symbolic constructions guide educational and therapeutic actions, in a dichotomous sense of pathologization or neglect.

However, as the expressions of the sexuality of autistic people are diverse and singular, they demand an adaptive support structure that considers their particularities. However, these measures require a paradigmatic change, at the risk of changing the form and not the structure.

Referências

1 Rios C, Ortega F, Zorzanelli R, Nascimento RL. Da invisibilidade à epidemia: a construção narrativa do autismo na mídia impressa brasileira. Interface [periódico na Internet], 2015 [cited 2019 May 22]; 19(53):325-336. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1414-32832015000200325&lng=en&nrm=isoLinks ]

2 Parchomiuk M. Sexuality of Persons with Autistic Spectrum Disorders (ASD). Sex Disabil [serial on the Internet], 2019 [cited 2019 May 10]; 37:259-274. Avaiable from: https://link.springer.com/article/10.1007/s11195-018-9534-z?shared-article-rendererLinks ]

3 Den Houting J. Neurodiversity: An insider's perspective, Autism [serial on the Internet], 2019 [cited 2020 Apr 10]; 23(2):271-273. Available from: https://journals.sagepub.com/doi/full/10.1177/1362361318820762?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%3dpubmedLinks ]

4 Beddows N, Brooks R. Inappropriate sexual behavior in adolescents with autism spectrum disorder: what education is recommended and why. Early Interv Psychiatry [serial on the Internet], 2016 [cited 2019 May 24]; 10(4):282-289. Available from: https://www.ncbi.nlm.nih.gov/pubmed/26265030Links ]

5 Kapp SK, Steward R, Crane L, Elliott D, Elphick C, Pellicano E, Russell G. 'People should be allowed to do what they like': Autistic adults' views and experiences of stimming. Autism serial on the Internet], 2019 [cited 2020 Apr 12]; 23(7):1782-1792. Available from: https://journals.sagepub.com/doi/full/10.1177/1362361319829628?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%3dpubmedLinks ]

6 Silberman S. Neurotribes: The legacy of autism and the future of neurodiversity. New York: Penguim Random House; 2015. [ Links ]

7 Pantazakos T. Treatment for whom? Towards a phenomenological resolution of controversy within autism treatment. Stud Hist Philos Biol Biomed Sci [serial on the Internet]. 2019 [cited 2019 May 22]; 77:101176. Available from: https://www.sciencedirect.com/science/article/abs/pii/S1369848618301018?via%3DihubLinks ]

8 Sala G, Pecora L, Hooley M, Stokes MA. As Diverse as the Spectrum Itself: Trends in Sexuality, Gender and Autism. Curr Dev Disord Rep [serial on the Internet], 2020 [cited 2020 Apr 13]; 10.1007/s40474-020-00190-1. Avaiable from: https://doi.org/10.1007/s40474-020-00190-1Links ]

9 O'Reilly M, Lester JN. Social Constructionism, Autism Spectrum Disorder, and the Discursive Approaches. In: O'Reilly M, Lester J, Muskett T, editors. A Practical Guide to Social Interaction Research in Autism Spectrum Disorders. The Language of Mental Health. London: Palgrave Macmillan; 2017. p. 61-85. [ Links ]

10 Lopes SVMU, Vilar NBS, Pouchaim AJMV, Sucupira LCG, Nóbrega LRM, Brilhante AVM. Transtorno do Espectro Austista e Sexualidade. Atas CIAIQ 2018; 2:1175-1180. [ Links ]

11 Endres RG. O Fenótipo Ampliado do Autismo em genitores de crianças com Transtorno do Espectro Autista - TEA [Internet]. Psic Teor e Pesq [periódico da Internet]. 2015 [acessado 2019 Maio 23]; 31(3):285-292. Disponível em: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0102-37722015000300285&lng=en&nrm=isoLinks ]

12 Minayo MCS. O Desafio do conhecimento: pesquisa qualitativa em saúde. São Paulo: Hucitec; 2014. [ Links ]

13 Bardin L. Análise de conteúdo. São Paulo: Edições 70; 2016 [ Links ]

14 Sala G, Pecora L, Hooley M, Stokes MA. As Diverse as the Spectrum Itself: Trends in Sexuality, Gender and Autism. Curr Dev Disord Rep [serial on the Internet]. 2020 [cited 2020 Apr 13]. Avaiable from: https://doi.org/10.1007/s40474-020-00190-1Links ]

15 Holmes LG, Strassberg DS, Himle MB. Family Sexuality Communication: Parent Report for Autistic Young Adults Versus a Comparison Group. J Autism Dev Disord [serial on the Internet]. 2020 [cited 2020 Apr 13]. Avaiable from: https://www.ncbi.nlm.nih.gov/pubmed/32056120Links ]

16 Holmes LG, Himle MB, Strassberg DS. Parental romantic expectations and parent-child sexuality communication in autism spectrum disorders. Autism [serial on the Internet]. 2016 [cited 2019 May 23]; 20(6):687-699. Avaiable from: https://www.ncbi.nlm.nih.gov/pubmed/26408632Links ]

17 Glidden D, Bouman WP, Jones BA, Arcelus J. Gender Dysphoria and Autism Spectrum Disorder: A Systematic Review of the Literature. Sex Med Rev [serial on the Internet]; 2016 [cited 2019 May 23]; 4(1):3-14. Avaiable from: https://www.sciencedirect.com/science/article/abs/pii/S2050052115000049Links ]

18 Strang JF, Janssen A, Tishelman A, Leibowitz SF, Kenworthy L, McGuire JK, Edwards-Leeper L, Mazefsky CA, Rofey D, Bascom J, Caplan R, Gomez-Lobo V, Berg D, Zaks Z, Wallace GL, Wimms H, Pine-Twaddell E, Shumer D, Register-Brown K, Sadikova E, Anthony LG. Revisiting the Link: Evidence of the Rates of Autism in Studies of Gender Diverse Individuals. J Am Acad Child Adolesc Psychiatry [serial on the Internet], 2018 [cited 2019 May 23]; 57(11):885-887. Avaiable from: https://www.ncbi.nlm.nih.gov/pubmed/30392631Links ]

19 Barnett JP, Maticka-Tyndale E. Qualitative Exploration of Sexual Experiences Among Adults on the Autism Spectrum: Implications for Sex Education. Perspect Sex Reprod Health [serial on the Internet], 2015 [cited 2019 May 23]; 47(4):171-179. Available from: https://www.ncbi.nlm.nih.gov/pubmed/26418175Links ]

Received: May 04, 2020; Accepted: June 15, 2020; Published: June 17, 2020

Collaborations

AVM Brilhante designed and coordinated the research, collected the data and participated in the data analysis and article writing. LMA Filgueira, SVMU Lopes, NBS Vilar, LRM Nóbrega, AJMV Pouchain and LCG Sucupira participated in the elaboration of the project, data analysis and article writing.

Chief editors:

Maria Cecília de Souza Minayo, Romeu Gomes, Antônio Augusto Moura da Silva

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