VOLUME 01
ISSUE 11
Special Edition: Sexuality and Relationships
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ON THE SPECTRUM IN
ADULTHOOD
July 9, 2020
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A NEWSLETTER PROVIDING RESOURCES FOR THE
ADULT AUTISM COMMUNITY
Brought to you by the
Autism Services (RCAAS)
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Disclaimer: this issue contains sexually explicit
language/sensitive subject matter.
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IN HER OWN WORDS:
A FIRSTHAND PERSPECTIVE ON AUTISM AND SEXUALITY
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When it comes to sexuality, individuals on the autism spectrum face numerous challenges, many of which have been amplified by the social isolation of COVID-19. In just a few months’ time, the world has changed dramatically, and while how we connect with each other has changed,
why
we connect remains the same. Autistic individuals are sexual beings with needs as complex and wide-ranging as the spectrum of autism itself and deserve to have those needs acknowledged.
I was diagnosed with autism at the age of 11 and since then, I have experienced more than my fair share of heartaches. Relationships have never come easy, from being dumped by my first boyfriend in college to losing my virginity while wearing a cheerleader uniform at age 22 to a man who lied to me about having a girlfriend. Multiple instances of bad judgment later, I now realize how vitally important it is for autistic individuals to have access to accurate and honest sex education, information not just about basic anatomy and biology, but the crucial social skills needed to navigate the nuances of dating and relationships.
Having an understanding of this need is what eventually led me to becoming an autism sexuality advocate. An autism sexuality advocate can be defined as the following:
“Someone who advocates for the right of individuals on the autism spectrum to be recognized as sexual beings, and to have equal access to the accurate and comprehensive sexual education being given to their neurotypical peers.”
Through this advocacy work, as well as my work as a professional speaker and conducting research for my graduate thesis, I have found ways to start these conversations, and to ask how we can teach these skills to autistic adults using the principles of Applied Behavior Analysis (ABA). As a Relationship Coach in the RCAAS, my goal is to apply this knowledge to our students and community members on the spectrum, to help them make choices to stay safe and be happy, and prevent them from going through the same pain that I have experienced.
When I had my heart broken, what I needed was someone to tell me that I wasn’t broken, that others have also made these mistakes and fallen down and gotten back up, and to explain what I needed to look out for in similar situations in the future. This discussion is one in which every stakeholder—autistic adults, parents, clinicians, and researchers—has a role to play. The perspectives gathered in this newsletter speak to those roles, and to the different challenges that we face in helping autistic individuals gain access to sex education. It is my hope that this issue will serve as a resource for anyone wanting to learn about the work being done in this area, and for those looking to build upon it and further the conversation about autism and sexuality.
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Amy Gravino, MA, CAS
Relationship Coach-RCAAS
amygravino.com
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SEX EDUCATION IS SAFETY EDUCATION
Peter Gerhardt, EdD
Executive Director, EPIC School
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Gil-Llario, et al. (2018) recently surveyed 350 adults with intellectual disabilities, half of whom reported as male and the other half as female, and reported that 2.4% of males and 9.4% of females self-reported having been sexually abused. However, when the staff charged with supporting these same adults were asked about the prevalence of sexual abuse among this group, the percentage jumped to 29.4% of the males and 27.8% of the females having been sexually abused.
First, any level of sexual abuse is unacceptable, and steps need to be taken to address this problem. Second, the stated discrepancy between self-report and staff report is troublesome as it would tend to indicate that for many of the individuals who participated in the survey, what constitutes sexual abuse is, at best, unclear. Sadly, while the prevalence of sexual abuse is wholly unacceptable even at the 2.4% level, it is also not surprising. Sadder still is that these numbers could have, potentially, been reduced if comprehensive sexuality education had been provided to these individuals at some point in the lives.
Despite that, the provision of comprehensive sexuality education to individuals with an Autism Spectrum Disorder (ASD) and an Intellectual Disability (ID) continues to be, in practice, rare. When sexuality education is provided it is: 1). provided much too late in life and 2). taught as disconnected sets of skills that typically fail to generalize outside of the instructional environment or maintain for any length of time after instruction stops. But what is often not recognized is that sexuality education is
safety education. At the center of sexuality education lies a set of skills which, once acquired and maintained, can help reduce the risk sexual abuse. Among these, and in no particular order, are discrimination skills, situational noncompliance, and recognizing sexual abuse.
Discrimination Skills: Discrimination skills are those competencies that enable the individual to recognize and identify differences between two or more items, actions, or activities, and then make a choice or decision based upon those differences. Discrimination skills range from differentiating along a single dimension (e.g., color) to differentiating along multiple dimensions (e.g., get the black, extra-large t-shirt with the Ramones logo) to discriminate using multiple, complex dimensions (e.g., get the red ball you and Tom were playing with outside this morning). In terms of safety and sexuality education, skill targets could include discriminating between the men’s and women’s room; which of the five urinals to use in the men’s room; which staff can/cannot help you dress/undress, or; which family members can/cannot help with menstrual care. I will note that for any of these skills to function as safety skills, they need to be generalized beyond the desk-top discrimination between photos of people or urinals to discriminating in the community at large, and subsequently, acting in accordance with that discrimination (e.g., asking for help from the designated person only).
Situational Noncompliance: From their earliest days in school, most individuals on the spectrum are taught to be compliant to teacher/parent instruction or direction. This is both necessary and appropriate. However, this can be problematic if compliance is all that is taught, as situational noncompliance is a critical safety skill that many individuals on the spectrum have never been taught. Situational noncompliance can, perhaps, be best understood as the physical refusal to comply with a direction. This is based upon the determination (i.e., discrimination) that the person giving the direction is not someone who should be listened to. In terms of safety and sexuality education, skill targets could include engaging in noncompliance when the
wrong person tries to take them to the bathroom; yelling or screaming when the wrong person asks them to undress, or; walking quickly away should an unknown person ask for them wallet or money. While these are not easy skills to acquire, we can be certain they will never be acquired if we do not make the effort to provide the necessary instruction.
Recognizing Sexual Abuse: Although many of us can recognize what does and does not constitute sexual abuse, the fact is we were taught that discrimination. Outside of physical sexual assault, the same cannot always be said for individuals with ASD and this lack of information has potentially far reaching, negative consequences. Whether or not some form of physical contact constitutes sexual abuse can be particularly difficult to teach. As individuals with ASD, particularly younger individuals, are often touched during the normal course of the day (e.g., physical prompting, play, delivery of individualized positive reinforcement, etc.) the emphasis on discrimination training becomes even more important. Starting at an early age, the provision of instruction in discriminating between who can/cannot touch an individual student and under what conditions (e.g., your teacher can touch your behind when they are prompting you to wipe after a bowel movement but cannot at any other time) is critically important. Again, this can be a difficult discrimination to learn, but if we never attempt to teach it, we can be assured it will never be learned.
Sexuality education, it seems, cannot be separated from safety education and both of these “real-life” domains are way more complex than this short piece can convey. However, instructional complexity should not be used as an excuse to avoid intervention. Learning is, unfortunately, difficult. So even if the entire set of complex discriminations is never acquired, then at least part of it will be if we make the effort and prioritize sexual safety skills. B.F. Skinner is quoted as saying, “A failure is not always a mistake, it may simply be the best one can do under the circumstances. The real mistake is stop trying.” So, while we certainly do not know much of what we really need to know about teaching sexuality education to individuals with ASD, we do know how to teach somethings. And something, in this case, is way better than nothing. To stop trying is not a really an option.
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LET'S TALK ABOUT SEX
Laura Graham Holmes, PhD
Senior Postdoctoral Associate
Boston University School of Public Health
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When I first started researching autism and sexuality, I did not know how helpful it is to include autistic people in designing my projects, and this caused me to have a narrow view of what autistic people needed and wanted. My research focus is relationships, sexuality, and health among autistic teens and adults. This is an “emerging” research area, meaning that we don’t know much – except that most people on the spectrum are interested in sexuality (either solo or partnered) and many want romantic relationships.
Sexuality involves so many things: emotions, beliefs, behaviors, relationships, faith and spirituality, community, and culture. It is important to me that I research what will be most helpful to people on the spectrum, so my colleagues and I recently asked a large group of adults and other stakeholders what we should be focusing on. The top priority was how to support healthy and satisfying relationships, while other priorities included preventing victimization, healthy pregnancy and birth, and understanding the needs of specific groups like LGBTQ+ autistic people and people with intellectual disabilities.
In some of my first studies, I learned that parents want healthy and fulfilling relationships for their teens, yet (like many parents) they struggle to know how to educate teens about sexuality and dating. When I recruited autistic adults to tell me about their experiences by answering questionnaires, many described not knowing how to go about finding or approaching a relationship partner. Based on this, I had a sense that the most important issue was that people wanted relationships but were unable to find partners.
For my second study, which asked more difficult questions about relationships, I included people over the age of 30 and attracted more women, trans, and non-binary people to participate. Several women emailed me to tell me that the issues they faced, like abusive relationships and coerced consent, were not represented in this study. I will always appreciate them for taking the time and energy to shift my view of what is important to autistic people, and the critical need for autistic people to inform every stage of research, including design of studies and what questions we ask.
My current research at Drexel and Boston University focuses on: 1). asking autistic adults about their needs and barriers to accessing sexual and reproductive health, and 2). using an autistic adult advisory board to help create a curriculum supporting healthy relationships by interviewing autistic young adults to learn what life lessons they think we should include. The biggest lesson I have learned so far, is to be yourself and to let go of people who don’t want to be your true friend. The future is promising, and I look forward to deepening my ongoing partnerships in the autistic community.
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GO TO YOUR ROOM AND DO WHAT? SEXUALITY FOR THOSE WITH HIGH SUPPORT NEEDS
Bobbie Gallagher, PhD, BCBA-D
Director of Clinical Training (ABA)
The Chicago School of Professional Psychology
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Sexual behavior is natural; talking about sexual behavior with your child may be a bit less natural. Trying to explain socially acceptable behavior around sexuality to an individual on the autism spectrum who is impacted by limited language, is even more difficult. So what is the most common thing to do? Tell them to go to their room where it is private. But do they really understand why they are going to their room?
Picture this: A young man is sitting on the living room couch, watching a movie, eating some popcorn, and has his hands in his pants. A parent walks into the room and says, “If you’re going to do that, go to your room.” Others may understand what “that” implies, but this may not be the case for this individual. This implied language that we all use to describe things that make us uncomfortable isn’t understood by all. You may need to use more specific language (e.g., “if you want to touch your penis, you need to go into your room where it is private.”) There are many prerequisite skills (e.g., Have they been taught the words, "penis," "private," "touch," etc.) that are needed before just sending them to their room and hoping they “take care of" everything.
Professionally, I have witnessed many interventions for what is deemed “inappropriate sexual behavior,” simply because of the location in which it is happening (e.g., the living room versus the bedroom/private space.) This cannot be the end of the teaching. There are a few things that parents/caregivers/educators should be doing early on to help individuals understand private versus public, such as labelling environments when you are in them. “This movie theater is a public place, there are so many people here.” “Your bedroom is nice and private and just for you.” The concept of private can be challenging, and needs to be discussed frequently to increase comprehension.
Don’t use the bedroom as a punishment, or time out space, if this is where you will want the individual to go to engage in masturbation. Pairing punishment with the bedroom can promote a negative connotation about the act of masturbation. Also, try not to overreact to the visual of seeing someone engaging in masturbation, as this could cause anxiety or shame around this behavior.
Once in their bedroom, do they know what to do? Support professionals need to remember who the client is when designing an intervention. Simply getting someone to go to their room may remove the uncomfortable situation from the view of parent, caregiver, housemates, etc., but are they successful once in the room? If yes, great! Let’s remember, it is not something everyone just automatically knows how to do, and often many with autism may be afraid of the initial sensations of pre-orgasm and not continue, leaving them frustrated. Or, some don’t engage in masturbation safely and use objects that could cause them harm. If they do not know what to do, how will this behavior be taught? Consider the following:
- Ensure they have the language – labelling of body parts, private vs public, or open door and closed door behaviors.
- Use visuals – there are books available with drawings, such as Sexuality and Relationship Education for Children and Adolescents with ASD by Davida Hartman.
- No one should be touching the individual to facilitate the act - models can be used with devices (e.g., masturbation devices and vibrators, or lifelike silicone models).
- Teach cleanup - some individuals are afraid or feel shame and may try to hide the evidence. This should be taught like any other skill, calmly and systematically.
Remember, becoming independent is crucial to the individual’s privacy, dignity, and safety. This is not the end of this conversation. Sexuality is a broad and important topic for all.
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The
Autism Awareness Center offers
a resource that provides information about how to teach sexuality to people with autism. The article includes information about the best language to use, how to teach rules and skills, and discussing masturbation.
- Click here for information about navigating the "sex" discussion with someone on the spectrum, including information about sexual health, consent, only doing what is comfortable, and how to use a behavior diary or a social story to reinforce staying safe.
- This resource offers an in-depth perspective that includes information about sexual and relationship education. The article discusses the importance of planning the discussion, including ample information about boundaries, and how to build confidence. They also offer a list of recommended books and resources when you are beginning to navigate discussions on sexuality.
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SUPPORTING SEXUAL INDEPENDENCE
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Autism NJ
published an
article
authored by Amy Gravino. In it, she discusses ways to help parents and professionals open a conversation about sexuality with the individual on the autism spectrum in their life.
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New Jersey Monthly Magazine published
this article authored by Leslie Garisto Pfaff. In the article, she presents the relationship experiences of several people on the autism spectrum. Specifically, she discusses misconceptions surrounding romantic/intimate relationships, issues experienced navigating social situations, and resources for parents/caregivers, service providers, and adults on the autism spectrum. Resources include online dating sites and opportunities to connect with other autistic adults seeking a relationship.
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Dr. Laura Graham Holmes is currently recruiting autistic people, 16-22 years-old to participate in a study on relationships and social skills. Must live in the USA and speak English. All interviews take place over the phone or Zoom. Participants receive a $40 gift card. Parental permission required for those less than 18 years-old. For more information, please email
[email protected] or call/text 267-938-5486.
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Violet Fenn, an autistic woman, shares her candid experience of maintaining a sexual relationship in
this article. She discusses common myths about sex and how it affects autistic adults. She also shares perspectives from other autistic adults that discuss different topics including, being autistic and LGBTQ+ and the importance of sexual connections for some autistic adults.
Disclaimer: any one person on the autism spectrum can have varying symptoms. This perspective is not meant to be generalizable to all people on the spectrum.
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“The purpose of a relationship is not to have another who might complete you, but to have another with
whom you might share your completeness.”
– Neale Donald Walsch
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On Wednesday, July 29th, from 10am-6pm EDT, GSAPP will be hosting the
Beautiful Mind Summit. This FREE virtual event will include thought-provoking and engaging panel discussions on mental health & wellness topics, including a presentation by RCAAS' Executive Director, Dr. Christopher Manente!
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NEWSLETTER TEAM
Dr. James Maraventano, Editor-in-Chief
Rugved Deshpande, Circulation Manager
Kim Spinelli, Senior Copy Editor
Jennifer Santos, Layout & Design
Norna Jules, Resources
Contributor
Amy Gravino, Guest Editor
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