VOLUME 01

ISSUE 11

Special Edition: Sexuality and Relationships

ON THE SPECTRUM IN

ADULTHOOD

July 9, 2020

IN HER OWN WORDS:

A FIRSTHAND PERSPECTIVE ON AUTISM AND SEXUALITY

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

SEX EDUCATION IS SAFETY EDUCATION

Peter Gerhardt, EdD

Executive Director, EPIC School

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.