Neurodivergent Sexuality

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Nope. There’s no porn here.

Anyway, when discussing sexuality, it is somewhat embarrassing to discuss openly especially in my native, “conservative,” (but actually very sexualized (^^♪) devout Catholic country (by the way I live in the Philippines where both priests and sexting celebrities co-exist (^-^)). Yet, this is one of the dimensions of humanity. We know sexuality from education, medicine, and media from porn to magazine topics. People have sex with different partners (or with oneself) for different reasons be it reproduction, lust, love, fun, curiosity, etc. Now, most people develop the concept of sexuality from their tween years (age where puberty begins) and begin sexual activity in adolescence and become aware also about birth control, sexual violence, and STDs. But what is it like for a neurodivergent when it comes to sexuality?

But first, let’s define sexuality:

Sexuality– the sexual habits and desires of a person[1]. Human sexuality is the capacity to have erotic experiences and responses.[2] In layman’s term, it is the feelings and attractions you feel towards other people.[3] This includes sexual behavior (sex, masturbation, erotic fantasies), sexual orientation (straight, gay, lesbian, bisexual, transgender or asexual), and sexual norms (how cultures and people deal with sexuality). Physical, as well as emotional, aspects of sexuality also include the bond that exists between individuals, and is expressed through profound feelings or physical manifestations of emotions of love, trust, and caring. Spiritual aspects of sexuality concern an individual’s spiritual connection with others. Sexuality additionally impacts and is impacted by cultural, political, legal, and philosophical aspects of life. It can refer to issues of morality, ethics, religion and theology.[2]

Image courtesy of DrGEN. Sexuality in a nutshell.

Sexuality involves and is shaped by many things, including[4]:

  • values and beliefs
  • attitudes
  • experiences
  • physical attributes
  • sexual characteristics
  • societal expectations

That’s the sexuality definition. Usually, neurotypical people learn sexuality through peers and the media often followed by sex education at schools. From there they learn about sexual behavior and their how to’s including flirting, dating, having a long-term relationship or casual sexual encounter and also birth control. But just like any other social aspects of humanity, sexuality is somewhat a complicated topic in neurodiversity.

Image courtesy of The Telegraph. Sexuality does not only mean sex. It encompasses sexual orientation, gender identity, and sexual norms.

Hmm…is sexuality complicated to the neurodivergent?

Yes. This can be a complex topic for the neurodiverse. Because sexuality involves not only sexual behavior, but also identifying sexual orientation and gender identity, this makes a difficult topic for the neurodiverse. This is especially true for people in the autism spectrum (ASD) because most sexual behaviors are social interactions as well. Not only in ASD, but the rest of neurological disabilities like dyspraxia, attention deficit hyperactivity disorder (ADHD), and Tourette’s syndrome are affected too in their sexuality because of motor skill and attentional problems that may arise and could cause. For learning disabilities, sexuality is less of a complication. For the sake of convenience, I will use ASD as an example for neurodivergent sexuality because of all the neurodiverse conditions, ASD is the most severely affected when it comes to sexuality.

Because neurodiversity is included in people with disabilities (PWDs), they are often excluded from sexuality topics that makes them naive to sexuality and vulnerable to become victims of sexual violence, having sexually transmitted diseases, and having unwanted pregnancies. Non-disabled people say that PWDs don’t need sex, anyway.

So if a neurodivergent is a PWD, then she has no right to sexuality? How bad.

In the long history of Western culture, PWDs are generally segregated from the rest of society and this has greatly inhibited the ability of PWD to freely meet and socialize with other people.[5] Furthermore, the social networks of people with disabilities can be small and this restricts the ability to form new relationships.[5][6]

Disability stereotypes add to the difficulty and stigma experienced by people with disabilities. The following myths about people with disabilities have been identified[5][7]:

  • Men and women with disabilities don’t need sex.
  • Men and women with disabilities are not sexually attractive.
  • Men and women with disabilities are “oversexed.”
  • Men and women with disabilities have more important needs than sex.
  • Boys and girls with disabilities don’t need sexuality education.
  • Men and women with disabilities can’t have ‘real’ sex.
  • Sex must be spontaneous and/or have a set time.
  • Men and women with disabilities, such as retardation, should not have children and should not be allowed to have children.

According to one survey, up to 50% of adults with disabilities are not in any sexual relationship at all.[8]

Though this list generally applies to people with physical disabilities, this is a double whammy for the neurodivergent as it leaves them more vulnerable to all sorts of sexual risks. In fact, one study showed that women with disabilities, “regardless of age, race, ethnicity, sexual orientation, or class [they] are assaulted, raped, and abused at a rate two times greater than women without disabilities [… the] risk of being physically assaulted for an adult with developmental disabilities is 4-10 times higher than for other adults”.[9]

Too bad. Very unfair and dehumanizing. But how is sexuality presented to the neurodivergent in order to avoid such risks?

A lot of strategies are used to address sexuality in neurodiversity. But before that, let’s address the neurotypical sexual development.

I will quote sexuality development from the book Recent Advances in Autism Spectrum Disorders – Volume I chapter 19, Relationships, Sexuality, and Intimacy in Autism Spectrum Disorders:

Sexuality begins in infancy and progresses through adulthood until death. Each life stage brings about physical changes and psychosocial demands that need to be achieved for sexual health to be attained. The capacity for a sexual response, both male and female, has been found as early as in the 24-hour period after birth. The rhythmic manipulation of genitals similar to adult masturbation begins at 2.5 to 3 years of age are a natural form of sexual expression.[10][11]  Also during the first three years of life, a child forms an attachment to his or her parents that is facilitated by physical contact. A stable, secure attachment with parents enhances the possibility of such an attachment when an adult is preparing to meet an intimate partner.[11]. Gender identity, i.e. one’s sense of maleness or femaleness, also forms in the first three years of life. A clear, secure gender identity allows for satisfying, intimate adult relationships. Children may display masturbatory behaviors and engage in a variety of sexual play activities that coincide with the development of socially expected norms in the context of natural curiosity about themselves and their environment. Between the ages of 3 to 7, children explore their own body parts, recognize them as male or female, and become interested in the genitals of their peers, leading to sexual play.[11] During the latency years, overt sexual play becomes covert, with children beginning to have experience with masturbation, should libidinal urges occur. As latency-age children segregate along sexual lines, any sexual experiences are usually with those of the same gender.[11] More overt behaviors and interests emerge again in adolescence with the onset of puberty.[10]

Pubertal changes can begin as early as 9 years of age or as late as 14 years of age. With the onset of puberty, sexual development moves to the forefront. Puberty, governed by hormonal changes, is defined as the time when a male or female is capable of sexual reproduction. A growth spurt, skeletal changes, increases in muscle and fat tissue, development of breasts, pubic and axillary hair, and the growth of genitalia are all hallmarks of the pubertal process.[12] With the physical maturation of gonads, genitalia and secondary sex characteristics, one’s sexual interest increases. Citing a study by Bancroft and colleagues (2003), Delamater and Friedrich noted that many males begin to masturbate between the ages of 13 and 15, whereas the onset for girls is more varied [11]. As older adolescents and young adults develop, more teens engage in sexual intercourse and develop a sexually active heterosexual lifestyle. Between 5 and 10% of adolescent males, and 6% of adolescent females, experiment with homosexual behavior. This exploration may be a transient experience, or it may develop into an adult homosexual identity [11]. One of the major psychological developmental tasks of later adolescence is to develop a firm sense of identity, of which one’s gender identity is an important aspect [13]. Achieving sexual maturity continues into adulthood with the ability to make informed decisions about one’s partner choice, reproduction, and long-term intimate relationships. 

However, like what most people think about PWDs where the neurodivergent is included, sexuality in ASD is unthinkable. Another excerpt from the book:

Sexual development is an intricate process that examines sexuality in regard to oneself and others. This process is often thought of in terms of normal development; however the developmentally disabled also go through sexual stages as they physically mature. This concept can be difficult to accept for some providers and caretakers, due to their tendency to view the developmentally disabled as perennial children.[14]

But no worries. While in the first half of the 20th century, disabled people are forcefully sterilized and sexual nature of those with disabilities has been traditionally denied and/or ignored, PWD sexuality (neurodiversity included) has now been acknowledged.[10] A TEACCH Report published through the United Kingdom, based on the approach and concepts developed by Mesibov and Schopler [15] in the 1980’s, put forth five basic assumptions concerning those with autism and are quoted below[16]:

  • People with autism of all levels of severity experience sexual drives, behaviors, or feelings with which at some point in their lives they need assistance

  • Parent involvement and participation is a crucial ingredient in the area of sexual education

  • Sexual education must be taught in a highly structured, individualized way using concrete strategies with less of an emotional overtone

  • Sexual behaviors must be an important behavioral priority with less tolerance for deviations in this area due to the stringent expectations of society

  • Sexual education must be taught in a specific individualized, developmental manner

This is right. PWDs should have rights to access to sex education, just like any other human being. While all neurodiverse people must have individualized approach to sexuality, this is more true to people with ASDs as they have communication and social deficits. As with others individuals who have a disability, those with an Autism Spectrum Disorder diagnosis possess the right to have a relationship, to marry, and/or to have children. Education about legal rights should be provided to those with ASD and extended especially to those whom they encounter, e.g. teachers, family, policemen, community members, etc. Education and awareness are key factors in the ability to identify violations to individuals’ basic human rights.[10]

Heracles and Omphale by François Boucher, 1735. Image courtesy of http://madamepickwickartblog.com. Like any disability, neurodivergent people have a universal right to date, have sex, marry, and have children.

Now, how is intimacy with neurodiversity (especially ASD)?

An excerpt again from Recent Advances in Autism Spectrum Disorders – Volume I:

Individuals growing up with ASD have the same human needs for intimacy and relationships as anyone.[17] However, the self-identification of these needs may develop later than same age neurotypically developing peers and become expressed differently depending upon the individual’s sexual knowledge, beliefs and values. Understanding of implicit dating rules and the hierarchy of sexual intimacies may become potential barriers for individuals with disabilities in general and particularly for adolescents and adults with ASD. Focus groups have been shown to make a difference in an individual’s understanding, especially with involvement of his or her family and caregivers.[18]

Intimacy is the sharing of emotional, cognitive and physical aspects of oneself with those of another. Individuals with ASD often have problems with rigidity and the need for repetition, which may limit the spontaneity and playfulness of sexual contact. Sensitivity to physical contact and inability to tolerate internal sensations created by physical intimacy may also create significant anxiety. The inability to read the thoughts, feelings, or expressed sensations of one’s partner can lead to miscommunication, emotionally or physically painful experiences, and/or shame and guilt. In the context of navigating intimacy, by adulthood there are several options for types of relationships, typically to include living single, cohabitating with one or several others, and living in a marriage/partnership. Currently, many adult individuals with ASD continue to reside with their family of origin. Due to poor social relationships and lack of employment, living with family provides a comfortable social situation.[10]

But unfortunately, this sort of living arrangement is a major turn-off for the potential dater, which makes people with ASD less attractive and therefore less likely to experience intimacy. This could lead an ASD person to commit inappropriate sexual behaviors and may also be prone to be victims of sexual violence, unwanted pregnancies, or STDs or even social isolation that may lead to depression.

Very disheartening, huh?

What can be done to manage sexuality with people with ASD and to all of neurodiversity in general?

Like any social and communication interaction that needs to be taught logically for an ASD person to understand, the same goes for sexuality.

To start with, bear in mind that human sexual drive is a primary drive; it is not optional. We have a sexual drive as long as we have enough to eat, drink, and sleep, and are not under undue stress.[19] Sex drive is biological, regardless whether a person has a neurodevelopmental disability or not. And this is primarily normal.

Also quote from University of California, Santa Barbara’s Sex Info Online states the importance of accessing right information about sexuality and affirming sexual rights of people with ASD:

It is important that families, schools and service providers treat the issues of puberty, sexuality and relationships with the upmost respect and sensitivity, as these attitudes can have a profound lifelong effect on sexuality. Young people with autism must learn that it is okay to be attracted to someone of the same sex, as orientation may be either fascinating or a very obscure concept. The intellectually disabled may ask a lot of questions regarding their sexuality, so it is essential that these individuals have the means to acquire information about safe and informed sexual choices. They need to have  ability to ask questions in a comfortable environment where they can be answered honestly.[20]

How can parents begin to think about this issue? Dr. Gerhardt recommends that parents[21]:

  • Think ahead – be proactive (“pre-teach”)
  • Be concrete (talk about the penis or vagina, not the birds and bees)
  • Be consistent and repetitive about sexual safety
  • Find someone of the same gender to teach the basics of safety and hygiene
  • Be sure to address the social dimension of sexuality
  • Strongly reinforce for all appropriate behavior
  • Redirect inappropriate behaviors. For example, if a child is likely to masturbate in class or in public, give him something to carry or hold, etc.

Sexual education is a core ingredient of successful intervention beginning with body anatomy, physiology and personal hygiene, taught in childhood. As the individual with ASD reaches older adolescence and adulthood, social dictates of what is appropriate sexual behavior in public must be carefully taught with video modeling and social stories [22] to prevent problematic outcomes for the person with ASD and those around him or her.[23] As with all stages of development, sexual development may be delayed, while pubertal development may be chronologically on time. The family needs to be educated about teaching sexuality as well in order to facilitate the knowledge of the individual with ASD throughout his or her development.[10][24][25]. Sexual education can also prevent sexual abuse, unwanted pregnancies, and sexually transmitted infections, or STI.[24]

More than sex education for the person with ASD, a greater educational need was identified for caregivers of individuals with disabilities to help individual better navigate their social environment with implemented help on a societal and political level.[10][25][26][27]

But caregivers deny or don’t teach sex education to neurodivergent people.

Caregivers should especially give sexual education more to neurodivergent people especially for those in the autism spectrum. Like I said, because they are blind socially, they are gullible and are more prone to be victims of sexual violence, unstable relationships, STDs, and unwanted pregnancies. You don’t have to hide an ASD teen to avoid unwanted pregnancies or STDs; the importance is you properly educate him regarding his sexuality (no sex-negative religious prohibition, oops.. sorry but proper sex ed is primarily important for him to understand himself as a normal sexual being…)

Other strategies include:

Tips made by Raising Children, an Australian parenting website, are some strategies used when educating teens with ASD about sexuality[28]:

  • The most important things are consent and safety. Consent means that your child needs to be sure that he feels OK about any kind of sexual experimentation and that the other person is OK with it too. Safety means that your child and the other person are protected against pregnancy and sexually transmitted infections, and that the experience is respectful and non-violent.[28]

  • You might need to explain attraction to your child. For example, when she’s attracted to another person, she might feel a tingly sensation in her body, or she might think about the other person a lot and want to be with them a lot.

  • You could use pictures of how people might behave if they’re attracted to your child:

    • The pictures might show a person leaning forward to hear what your child says, touching your child’s hair, laughing at her jokes, touching her arm or inviting her to do something together.
    • On the other hand, you might also need to explain that smiling at your child and talking to him doesn’t always mean that the other person is romantically interested. The person might just be being friendly.

  • Managing sensory issues – You could try ‘desensitising’ your child. This might involve you sitting near your child, wherever she’ll happily tolerate. Then increase your physical contact with her by, for example, touching her arm for a small amount of time. You could keep this going over months or even years until she can handle a hug from you.

    Healthy relationships
    Explaining good and bad signs in a relationship can help your child develop healthy and safe romantic relationships.

    Here are some good signs to talk about with your child:

    • The other person only asks you to do things that you feel safe and comfortable with.
    • The person is honest and doesn’t tell made-up stories to you about family members or peers.
    • The person listens to you as much as you listen.
    • The person doesn’t expect you to do everything that the person wants. For example, the person is happy if you want to do something different or go out by yourself or with other people.
    • The person supports you. For example, they say nice words to you and help you when you’re upset.
    • The person doesn’t tease or bully you or say things that make you feel bad.

    Here are some bad signs:

    • The person doesn’t give you much attention or affection in return for your feelings.
    • The person says mean things that make you feel stupid or bad.
    • The person hurts your body, your private parts or your feelings about your body and private parts. For example, the person makes you do something that makes you feel uncomfortable.
    • The person doesn’t want you to meet friends and family.
    • The person bullies you.

  • End of a relationship
    Teenage romantic relationships don’t always last forever. Your child might need to know that sometimes they go for a long time, and sometimes they end quickly. Sometimes both people in a relationship agree to end it. Other times only one person decides to end the relationship.

    If your child didn’t want a relationship to end, she might feel confused, sad, lonely or angry. She might also feel like this if she wanted a romantic relationship with someone but the other person didn’t want one. These feelings are normal.

    You can support your child by encouraging him to:

    • spend time with other friends and family
    • do things he enjoys
    • talk about what happened and how he’s feeling
    • express how he’s feeling using writing, Social Story™, art or sport.

    You could also talk about things your child shouldn’t do, such as shout at the other person, send angry emails or text messages, or post rude things on social networking sites.

  • Good touch and bad touch
    People with ASD can be vulnerable to abuse because they don’t always recognise when something’s not right. So you might need to teach your child explicitly the difference between good touch and bad touch.

    For example, good touch is something that friends and family might do to show they care for each other. These touches might include a handshake to say hello, a hug or a kiss. A bad touch is something that feels wrong or uncomfortable, such as a stranger asking for a kiss.

    You might also need to explain that a touch might be a good touch for one person, but the same touch might be a bad touch for someone else. For example, one person might like to be tickled (this is a good touch), whereas someone else might not enjoy being tickled (this is a bad touch). Or it’s OK to kiss a close friend or family member hello if you see them in the street, but it’s not OK to kiss a stranger hello.

Hygiene is also very important as most children on the spectrum do not independently learn what they need to know about hygiene and self-care. The goal is to teach children to be as independent as possible in these areas. For many, this will be an ongoing life-long goal. Teaching your child hygiene skills also teaches them about modesty and responsibility.[29]

Explaining to your child why they need to establish good self-care routines – the need for good hygiene to stay healthy and the social aspects of needing to smell good and look clean – may be especially important for children who don’t automatically understand why it is important to do things that are difficult for them to do.[29]

DISCLAIMER: The following paragraph may contain sensitive issues. I apologize…

I really found these strategies very helpful especially for a teenager. And I encourage every caregiver to please do this in an educated, individualized, developmental approach without malice or religious indoctrination (a famous example is the US-government’s abstinence-only programs[30] and the decade-long debate over reproductive health law in my Philippines). With educating a neurodivergent properly about sexuality, she can be able to decide on herself whether she wants to date, have a sexual relationship, or have children or start a family. It’s a basic human right!

Image courtesy of abeautifulmessme.wordpress.com. With proper education, a neurodivergent can be able to form relationships, just like any other human.

Final note: Neurodivergent people, regardless of their hidden disability, are humans too with the same right as the rest of humanity in life, love, and more. That’s why every aspect, including sexuality must be a right too to fulfill one of the most basic needs of human life: love and acceptance (oh and sexuality too).

I told you, no porn here.

Reference:

  1. Merriam-Webster’s Dictionary 2015
  2. en.wikipedia.org/wiki/Human_sexuality
  3. au.reachout.com/what-is-sexuality
  4. https://www.optionsforsexualhealth.org/sexual-health/sexuality
  5. http://en.wikipedia.org/wiki/Sexuality_and_disability
  6. Sarah Whyte (11 November 2012). “A touch of kindness”. Sydney Morning Herald. Retrieved 7 March 2014.
  7. “Mythbusting: Sexuality and Disability”. CREA. Retrieved August 18, 2012.
  8. “Disability Sexuality and Disabled Dating”. Disabled World. Retrieved August 18, 2012.
  9. (Sobsey, 1994; Cusitar, 1994) (December 2011). “A PRACTICAL GUIDE FOR CREATING TRAUMA-INFORMED DISABILITY, DOMESTIC VIOLENCE AND SEXUAL ASSAULT ORGANIZATIONS” (PDF). Disability Rights Wisconsin. p. 10. Retrieved August 18, 2012.
  10. Fitzgerald, Michael (2013). Recent Advances in Autism Spectrum Disorders – Volume I. ISBN 978-953-51-1021-7. in: http://www.intechopen.com/books/recent-advances-in-autism-spectrum-disorders-volume-i/relationships-sexuality-and-intimacy-in-autism-spectrum-disorders
  11. DeLamater J, Friedrich WN. Human sexual development. J Sex Res. 2002 Feb;39(1):10-4. PubMed PMID: 12476250. eng.
  12. Nussey SS, Whitehead, SA. Endocrinology: An Integrated Approach. Oxford: Bios Scientific Publishers; 2001.
  13. Erikson E. Childhood and Society. New York: Norton; 1950.
  14. Ballan MS. Parental perspectives of communication about sexuality in families of children with autism spectrum disorders. J Autism Dev Disord. 2012 May;42(5):676-84. PubMed PMID: 21681591. eng.
  15. Mesibov G, Schopler E. Autism in Adolescents and Adults. New York: Plenum Press; 1983.
  16.  Sexuality and Autism. TEACCH Report. Autism independent UK. http:www.autismuk.com/index9sub1.htm
  17. Ousley OY, Mesibov GB. Sexual attitudes and knowledge of high-functioning adolescents and adults with autism. J Autism Dev Disord. 1991 Dec;21(4):471-81. PubMed PMID: 1778961. eng.
  18. Healy E, McGuire BE, Evans DS, Carley SN. Sexuality and personal relationships for people with an intellectual disability. Part I: service-user perspectives. J Intellect Disabil Res. 2009 Nov;53(11):905-12. PubMed PMID: 19709348. eng.
  19. http://www.autism.com/understanding_social_sexual
  20. http://www.soc.ucsb.edu/sexinfo/article/sex-and-autism
  21. http://autism.about.com/od/transitioncollegejobs/f/sexed.htm
  22. Chan J, John RM. Sexuality and sexual health in children and adolescents with autism. The Journal for Nurse Practitioners. 2012;8(4):306-15.
  23. Stokes M, Newton N, Kaur A. Stalking, and social and romantic functioning among adolescents and adults with autism spectrum disorder. J Autism Dev Disord. 2007 Nov;37(10):1969-86. PubMed PMID: 17273936. eng.
  24. Travers J, Tincani M. Sexuality education for individuals with Autism Spectrum Disorders: Critical issues and decision making guidelines. Education and Training in Autism and Developmental Disabilities. 2010;45(2):284-93.
  25. Koller R. Sexuality and Adolescents with Autism. Sexuality and Disability. 2000;18(2):125-35.
  26. McGuire BE, Bayley AA. Relationships, sexuality and decision-making capacity in people with an intellectual disability. Current Opinion in Psychiatry. 2011;24:398-402.
  27. Kandel I, Morad M, Vardi G, Merrick J. Intellectual disability and parenthood. Scientific World Journal. 2005 Jan;5:50-7. PubMed PMID: 15674450. eng.
  28. http://raisingchildren.net.au/articles/autism_spectrum_disorder_sexuality_relationships_teenagers.html
  29. http://www.srcp.org/for_some_parents/developmental_disabilities/activities_to_use_with_your_child/autismDD.html
  30. http://en.wikipedia.org/wiki/Abstinence-only_sex_education

Further Reading:

  1. Harmon, Amy (2013). Asperger Love: Searching for Romance When You’re Not Wired to Connect. The New York Times. ISBN: 978-1-61452-075-7.
  2. http://en.wikipedia.org/wiki/Social_Stories
  3. https://www.psychologytoday.com/blog/promoting-empathy-your-teen/201104/creating-healthy-awareness-sexuality-your-child-or-teen