Positive Approaches Journal, Volume 10, Issue 1

Volume 10 ► Issue 1 ► May 2021

Sexuality and Social Connectedness Part 2

Volume 10 ► Issue 1 ► May 2021

Data Discoveries

The goal of Data Discoveries is to present useful data using new methods and platforms that can be customized.

Access to Internet and Technology Among Adults with Disabilities

Access to the internet, technology devices, and social media has become a part of most of our lives, especially in the era of COVID-19 related lockdown orders. Whether we are searching the web for news or chatting with friends on Facebook, technology plays a large role in keeping us connected. This dashboard is powered by data from the Pew Research Center, Pennsylvania Autism Needs Assessment, and U.S. Census data aimed at evaluating how Americans with disabilities are accessing technology and using the internet to stay engaged in their communities and connected to others.

To navigate the dashboard below, use the buttons along the top to browse through the topics. On tabs that include filters (located just above the chart on the left-hand side), select a value to filter the data by (i.e. race, age group, gender) and the charts below will be filtered to that specific group. To see the exact values displayed in the graphs, hover over the marks on the graph and a tooltip will appear to show these values. If you would like to download the data dashboard, click the download icon in the top right corner of the dashboard. To access the websites used in developing the data dashboards, click on their respective icons located in the upper right-hand corner of the dashboard.

Having Trouble Getting Online?

Public libraries are a great way to access computers and other technology devices as well as broadband internet. To find a Pennsylvania Public Library near you, visit Public Libraries (pa.gov) and search for your county. Access to free Wifi can also be helpful if you do not have access in your own home, to find accessible hot spots near you visit Free WiFi Hotspots in United States | WiFi Map and search for your city. For more ways to get involved in the online community, visit ASD Next to browse virtual social events, get connected on social media, and access resources. As always, when we are using the internet it is important to keep ourselves and our information safe. Visit ASERT: Cyber Safety Tips and Tools to learn more about how to keep your personal information safe when browsing the internet and using social media sites.

Volume 10 ► Issue 1 ► May 2021

Embracing Inclusion: Prioritizing Lesbian/Gay/Bisexual/Transgender/Queer (or Questioning)/Intersex/Asexual/+ (LGBTQIA+) Inclusion for People with Intellectual and Developmental Disabilities

Parris Boyd

Abstract

This article explores the importance of LGBTQIA+ inclusion for people with intellectual and developmental disabilities. People at this intersection face unique barriers such as choosing between expressing their gender and/or sexual identity and losing life-sustaining supports. After identifying some of these barriers, the article gives readers ways to be inclusive when working with LGBTQIA+ people with disabilities.

Volume 10 ► Issue 1 ► May 2021

Responding to the Victimization of Individuals with Intellectual Disabilities and Autism

Sierra Brown, PhD

Abstract

People with disabilities are at risk for sexual victimization at a much higher rate than their peers. Current estimates may be underestimated due to challenges in communication and disclosing abuse. Improving sexual education and knowledge for people with disabilities can improve outcomes and reduce the risk of victimization. However, many individuals do not receive adequate sexual education. This article reviews how Autism Services, Education, Resources, and Training (ASERT) Collaborative is responding to this issue and raising awareness to decrease victimization.

Introduction

Healthy relationships and sexuality are important parts of a fulfilling, everyday life, and a right for all people with developmental disabilities. However, many people with developmental disabilities do not have the same access as others to education and knowledge essential to developing and maintaining healthy relationships – including education regarding sexual health and sexuality.^1,2 People with developmental disabilities are at a disadvantage as research suggests that people with Intellectual Disabilities and Autism (ID/A) have lower levels of perceived and actual knowledge of sexuality.³ Additionally, poor sexual knowledge may increase the risk of sexual victimization. ² Recent findings suggest that people with intellectual disability are sexually assaulted seven times more than people without disabilities. This striking statistic highlights the need and urgency to develop risk reduction strategies and improve the sexual education for people with developmental disabilities.

Sexual Education and Developmental Disabilities

Sexual education is essential to the development of healthy relationships and reducing risk of victimization. However, sexual education is not universally provided to children, adolescents, and adults who have developmental disabilities. A common belief was that people with disabilities did not desire sexual relationships, were asexual, or could not manage these types of relationships. Decades worth of research and advocacy have documented improved attitudes of families, caregivers, and professionals regarding the sexuality and sexual education of individuals with disabilities.^4,5 Despite the paradigm shift, the availability to receive this type of education remains limited for individuals with disabilities for many reasons. Though attitudes have generally improved overall, the sexual development of individuals with disabilities is still often ignored. ⁵ Information about sexual health may be intentionally or unintentionally withheld from people with disabilities during critical moments of adolescence and adulthood for fear that the information will increase inappropriate sexual behavior, fear of victimization, the belief that the person would not have the ability or desire for a sexual relationship, or due to concerns regarding consent and their decision making ability regarding sexual activity. Students with disabilities are at times excluded from sex education at school or may not receive adequate education that is taught to their developmental level.⁶ If topics related to health and development are covered, information about more nuanced topics such as dating, marriage, and sexuality are typically not adequately covered.⁷ By the time a person reaches adulthood, there are very limited resources and opportunities for direct education. When sex education is provided it is often not tailored to the individual’s needs and is offered traditional views of sexuality from a heteronormative framework.⁸ Many individuals with disabilities are then left to get their relationship and sexual knowledge from unreliable sources, such as the internet, TV shows, movies, and pornography.¹ These methods may perpetuate misconceptions about sexuality and do not provide adequate information about what it takes to have a healthy sexuality. Oftentimes, the responsibility of sexual education falls on parents and caregivers who may have a high degree of discomfort or uncertainty about the appropriateness of broaching topics issues related sexual health, relationships, and sexuality.^4,8-11

Direct instruction of sexual education is also necessary to give people the tools necessary to recognize and prevent abuse or exploitation. Increase risk of sexual victimization is influenced by many factors including learned compliant behaviors, increased reliance on others for assistance in personal care, communication challenges, lack of awareness that certain behaviors are considered sexual abuse or exploitation, or a desire to be socially accepted. Education can be used to teach personal safety skills to recognize and disclose sexual abuse. Education can also be a powerful tool to empower people with disabilities to exercise greater autonomy over their body, life, and choices.

Best Practices in Sexual Education

When it comes to sexual education, a comprehensive range of topics should be covered to address all aspects of healthy relationships and sexuality– from personal hygiene, information about puberty, understanding anatomical information, and topics regarding sex.

Sexual education should be tailored to the person’s specific needs, with special consideration for the developmental level, communication skills, and age. Teaching sexual education should follow the best practices of education for individuals with disabilities including repetition, the use of visuals, concrete language, video modeling, and social scripts. Therefore, sex education cannot be a one-time occurrence that happens in high school. Sex education should be started from an early age and should continue through adulthood, focusing on age-relevant issues. The goals of the education should not only be aimed at risk reduction and prevention of inappropriate sexual behaviors. However, it is equally important to equip people with skills to develop meaningful relationships and sexuality and also provide them information to be able to distinguish between risky and safe behaviors.

The adequacy of sexual education may also be related to conflicts with existing policies, regulations, and laws aimed at protecting vulnerable populations. For example, results of one study showed professionals identified several topics related to sexual health that were not allowed to be taught in their organization. ¹² It is a challenge to balance existing policies and procedures with the needs of individuals who benefit from direct sexual education. In Pennsylvania, this was addressed by the Sexual Health, Personal Relationships, and Sexuality Guidelines put forth by the Office of Developmental Programs (ODP)¹³ which state, providers are encouraged to “have a policy on sexuality that is consistent with the values of Everyday Lives…” and to “provide accessible and appropriate education, information, and resources that address sexual health, personal relationships, and sexuality needs.”

Autism Services, Education, Resources, and Training’s (ASERT) Response in Pennsylvania

In 2018, the National Public Radio (NPR) released a series called “Abused and Betrayed” investigated unpublished findings from the US Department of Justice documenting how people with intellectual disabilities were disproportionally impacted by sexual abuse. ¹⁴ Statistics provided by the Department of Justice revealed that people with disabilities were sexually assaulted seven times more than people without disabilities indicating people with disabilities. ¹⁴ The series prompted swift action from advocates and organizations to help meet the needs of individuals with disabilities to reduce the risk of victimization and to increase competency in healthy relationships.

ASERT is a state-wide initiative in Pennsylvania funded by ODP aimed at supporting individuals with autism, their families, caregivers, and professionals through providing resources, education, and training.  Following the reporting by NPR, the response from ASERT began with a partnership with experts in the field to address the risk of sexual victimization for people with autism spectrum disorders (ASD). The first initiative by ASERT was in collaboration with researchers at the National Crime Victims Research and Treatment Center (NCVC) at the Medical University of South Carolina called the “Be Safe” campaign. The goal of the Be Safe resource collection was to disseminate pertinent, scientific, and developmentally relevant information to the community about prevention and intervention strategies for people with ASD. These resources were created in part to address the needs of parents, caregivers, and professionals but also aimed to empower self-advocates by providing information about healthy relationships and sexuality.

The resources developed for the Be Safe campaign were created with best practices of information dissemination in mind. To target a large variety of stakeholders, learning styles, and information preferences, ASERT adapted resources on topics related to sexual health and reducing risk in a variety of formats including resource pages, social stories, visuals, and videos. eLearning modules were also developed to provide families/caregivers, professionals, and self-advocates more in-depth information about the prevention and intervention for sexual victimization. Furthermore, to provide the community easier access to these resources these resources were then published online at ASERT’s website, www.PAAutism.org/BeSafe.

ASERT continues to develop projects with a focus on reducing risk of sexual victimization through collaboration with two organizations that support individuals with developmental disabilities in Pennsylvania: Healthcare Quality Units (HCQUs) and Temple University Institute on Disabilities as part of the Information Sharing and Advisory Committee (ISAC) sub-committee on sexual abuse prevention. The aim of this collaboration was to develop resources to increase capacity and knowledge for service providers on topics healthy relationships and risk reduction in line with ODP’s Sexual Health, Personal Relationships, and Sexuality Guidelines.

Conclusions

References

Biography

Sierra Brown is a licensed and board-certified psychologist. Dr. Brown is currently an Assistant Professor within the Department of Psychiatry, Division of Autism Services. In the Division of Autism Services, she is actively involved in research and community outreach projects through the Autism Services, Education, Resources, and Training (ASERT).

Contact Information

Sierra Brown

Assistant Professor, Department of Psychiatry, Division of Autism Services

Phone: 717-531-8338

Volume 10 ► Issue 1 ► May 2021

Detangling Sexuality Information: Misinformation, Confusion or Hope

Beverly L Frantz

Abstract

Sex is a difficult subject for parents, teachers, and other professionals to discuss. Sexuality conversations tend to be brief, biased based, and infrequent. Without ongoing comprehensive sexuality education, a gap between intelligence, curiosity, social messaging, and personal experiences can have significant consequences.

This paper explores how the lack of comprehensive sexuality education with an increase in the number of sexual messages from the internet and other social media platforms together with sexual behavior rules that people are required to follow in group homes or other residential settings provide confusion for people with intellectual and developmental disabilities. The confusion looks very different for an adult and is a slippery slope from non-contact sexual behavior to sexual offending behavior.

Sexuality is an integral part of who we are. It is a basic and natural human drive. It is more than just “doing it” or “having sex.” It is a constant companion throughout life. The World Health Organization (WHO) defines “sexuality” as a “central aspect of being human which encompasses sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy and reproduction.¹”

If sexuality is such an integral part of our lives, why do we have such a difficult time talking about it? Especially, with people with intellectual and developmental disabilities (IDD)? Over their lifespan, a person with IDD may need additional support to explore and understand sexuality. They want a romantic relationship. However, their parents, residential staff, or other professionals may discourage the relationship for fear they may engage in sexual intercourse.

Sources of Conflicting Sexual Messages

Remember when you were a child, how did you learn about sex? What formal or informal messages did you receive about sex? How many boyfriends or girlfriends did you have in grade school? Did the person you thought of as your boyfriend or girlfriend know? How long did the relationship last? A day, two days, a week? What about in high school? Post high school? Sexuality is not static. It is fluid. We perceive it differently as we age and experience its various forms. For example, sexuality in its broadest terms includes holding hands, kissing, snuggling, doing things together, the examples are endless.

People, including people with IDD, receive numerous sexuality messages over their lifespan. Age, culture, family beliefs, geography, education, religion/faith all contribute to the types of sex messages a person receives. People, including parents, caregivers, teachers, professionals, direct support professionals, siblings, and friends each provide different messages. The media including print, television, movies, internet, and other social platforms also supply different messages and frequently contradict each other. These contradictory messages become a tangled web of words. A web from which it is difficult to discern accurate information from misinformation and sensational information.

Regardless of any sexuality question or issue, clear and concise statements are easier to understand. People with IDD infrequently receive clear and concise statements; unless, it is to re-direct or reprimand their behavior. Everyone should have the opportunity to receive clear, accurate, and non-judgmental information about sexuality.

The Role of Parents/Care Providers in Sex Education

Parents and care providers play a significant role in their child’s sexual education and behaviors. Curiosity about sex is natural, regardless of a person’s age. If accurate sexuality education is not provided, children will learn about it from other sources. The sexuality information a child, adolescent, or adult receives from outside of the family may be misleading and inaccurate. Parents must be sensitive to what information their child, regardless of the age of the child, is seeking. Sources may present information as accurate, misleading, romanticized or a combination.

The following example illustrates how easily, from a generational perspective, it is to misunderstand sexual words and concepts.

Mom and dad heard “oral sex” from an adult perspective and were prepared to answer the question from that perspective. That is, the mechanics of oral sex. What the child was actually asking was whether his parents kissed each other that morning. How could oral sex be mistaken for kissing? Simply. A few days before the child asked, “the question,” he had a dental check-up; and, the importance of oral hygiene was discussed. The following day his buddy at school shared a secret with him. His buddy said that during recess and behind the school dumpster, he was going to have sex with his girlfriend. From a child’s perspective, kissing was synonymous with sex.

The boy was asking his mother about kissing, not oral sex. He put one (visit to dentist/oral hygiene) and one (his friend’s plan to kiss his girlfriend) together and got three (the oral sex question). Younger children are interested in body parts, pregnancy, and babies, rather than the mechanics of sex. Providing accurate, non-judgmental information to a child about their bodies, boundaries, and sexuality reduces the chance of misinformation and improves their ability to make safe and informed decisions. Accurate information acts as a safe passage to adolescence and adulthood.

Parents are their child’s first sex educator. They play a significant role in the sexual development and behavior of their child. Talking about sex, regardless of the child’s age, can be uncomfortable. At what age should parents start discussing sex with a child? How to start the conversation? What should be included in the conversation? The “sex” conversation is not a one-time conversation. It is a continuous conversation delivered in a non-judgmental, age appropriate, positive manner. There is no single, right way to talk to your child about sex. In fact, talking to your child about sex might be the easiest conversation since sex refers to the biological characteristics that define humans as male or female. Discussing the broader topics of sexual health, sexuality, and sexual rights are more challenging. Chronological and development ages and life experiences are important factors in considering when, how, and what topics to begin with.

Healthy Sexuality

The Pan American Health Organization (PAHO) and the WHO convened a number of experts together to develop working definitions of key terms when discussing sexual health with respect to body integrity, sexual safety, eroticism, gender, sexual orientation, emotional attachment, and reproduction. Four key concepts were defined: sex, sexual health, sexuality, and sexual rights. “Sex” as commonly defined generally means sexual intercourse. For the purpose of this paper, the PAHO and WHO definitions will be used. That is, “sex” refers to the biological characteristics that define humans as male or female. “Sexual health” requires a positive and respectful approach to sexuality and sexual relationships, as well as the possibility of having pleasurable and safe sexual expression, free of coercion, discrimination, and violence. For “sexual health to be attained and maintained, the sexual rights of all persons must be respected, protected and fulfilled.²”

“Sexual health” needs to be understood within social, economic, and political contexts. Sexual health includes:

“Sexualization” often called the “shadow” side of sexuality, spans behaviors that range from harmless manipulation to violent and illegal behaviors. Behaviors may include flirting, seduction, sexual harassment, sexual abuse, and rape.

The importance of providing comprehensive sexuality education in a positive, non-judgmental manner is critical to providing an opportunity for individuals with IDD to receive accurate sexuality information, ask questions, understand the rights and responsibilities of engaging in sexual activity, and to enjoy the same everyday life as those without a disability. The numerous and conflicting formal, informal, and sexually nuanced messages a person with IDD receives through their lifespan can impact how they understand the subtle differences between platonic, romantic, and intimate relationships.

Sex Education in School

A 2014 study reported that 93% of parents supported having sex education taught in middle school and 96% of parents supported having sex education taught in high school³. Comprehensive sex education is supported by numerous prestigious health and medical organizations including the American Medical Association, the American Academy of Pediatrics, and the Society for Adolescent Health and Medicine.

Schools in Pennsylvania are not required to teach sex education⁴, however, they are required to provide human immunodeficiency virus (HIV) education. Primary/elementary schools are allowed to omit instruction on the sexual methods of infection transmission. Sex education programs vary widely across the 500 school districts in Pennsylvania. With the exception of sexual transmitted infections (STI) and HIV prevention education, each school district is permitted to decide if it chooses to offer sex education and what topics they want included. If a student’s school does not provide comprehensive sex education, parents can advocate or insist that comprehensive sex education be included in the student’s Individualized Educational Program (IEP).⁵

An IEP is a program developed to ensure that a student with an identified disability, who is attending an elementary or secondary educational institution, receives specialized and related services. Some consider the IEP to be the cornerstone of a quality education for a student with a disability. School districts that do not offer comprehensive sex education curricula, unintentionally place students with disabilities at a higher risk of sexual victimization and offending behaviors. A substantial gap exists between what a child learns at home about healthy sexuality and what they learn and experience in middle and high school. How do they reconcile students touching other students – from hugs, to holding hands and kissing, to chest bumps and towel snaps in locker rooms? Especially, if they were taught to “keep your hands to yourself?” One risk reduction strategy, cited by the Center for Disease Control (CDC), is providing comprehensive sex education to reduce victimization.

When organizations such as the American Medical Association, the American Academy of Pediatrics, the Society for Adolescent Health and Medicine and the CDC support comprehensive sex education in schools, the question needs to be asked – why isn’t comprehensive sex education part of every student’s IEP? Anecdotal reports suggest that sex education is frequently included in a student’s IEP only when the student exhibits challenging sexual behavior, such as masturbating (self-pleasuring) in class, sexualized behaviors and inappropriate sexual language directed toward teachers, staff, and other students.

Students graduate from high school and enter the workforce or a post-secondary educational institution. Curiosity, misinformation, and gaps in accurate information grow exponentially as the individual transitions from high school into adulthood. Once a student leaves school, the opportunity to obtain healthy and accurate sexuality information diminishes. A one-day training or conference workshop cannot replace the mixed messages the person has previously received. In fact, it may be more confusing.

How will lack of sex education, sexual misinformation, and stereotypes impact their employment or studies? How and who will help them navigate their new sexual landscape?

The Individual with Disabilities Education Improvement Act (IDEA) requires that by age 16 the IEP team must determine what instruction and educational experience will help the student prepare for transition from school to adult life. Person Centered Planning (PCP) is widely used to help an individual explore where they are now, how they would like their life to change and what is needed to bring about that change. Consider who has the authority to decide if there is a difference of opinion between what is important to the person and what is important for them. It is not the person with IDD. It is a person with authority, perceived or real, who will make the final decision. Parents, educators, clinical professionals, and others create barriers for the individual to live an everyday life. Their own fears, biases, misinformation, and desire to protect the individual may have the reverse effect. Safety and risk must be balanced. PCP is an excellent opportunity to introduce new or expanded sexual topics into the plan that will create a safe place to talk and learn about sexuality. ⁶

Self-Determination

Self-determination is the concept and principle that includes people choosing and setting their own goals, being involved in making life decisions, self-advocating, and working to reach their goals. The American Association on Intellectual and Developmental Disabilities (AAIDD) defines “Self-determination” for people with IDD as “having the same rights to, and responsibilities that accompany, self-determination as everyone else. They are entitled to opportunities, respectful support, and the authority to exert control in their lives, to direct their services, and to act on their own behalf. ⁷ ”

A review of the self-determination literature tells us there is a consensus on the definition and concept. What is omitted is the concept of sexuality. It is intertwined with the person’s future goals, their ability to take control of their life, developing healthy self-esteem, willingness to ask questions and seek answers, and solutions. As previously mentioned, sex is more than solo or partner genital behavior. Sex is only the first three letters of sexuality. It is one component of a much larger concept.

The adverse consequences for people with IDD who receive no or inaccurate sex education increase the risk of sexual victimization and sexual offending behaviors. There are few published studies on the relationship between comprehensive sex education, victimization and offending sexual behavior, and individuals with IDD.

The number of people with IDD who come into contact with law enforcement as victims, witnesses, or perpetrators is staggering. The victimization rate for people with IDD is anywhere from 4 to 10 times higher than the general population. The discrepancy between the 4 to 10 times is based on whether the data collected included people living in congregated residential settings.⁸ Alleged perpetrators, generally for sex-related offenses, are disproportionately represented in the criminal justice system.⁹

The difference between living independently, living with family, or living in a community residential setting directly impacts the type and number of sexual messages a person receives¹⁰. Studies have suggested that the turnover rate in group home settings varies between 50% and 85% per year. Sheryl A. Laron, in her book Staff Recruitment, Retention, & Training Strategies For Community Human Services Organizations, reported that 41% of direct support workers left their jobs before finishing six months on the job, and another 25% left before finishing 12 months on the job.¹¹ The number of agency staff and other professionals involved with supporting someone living in a group home could be 50 or more a year. Each of those individuals may express their personal views about sexuality to the people they support. A 2018 study conducted with 23 Applied Behavior Analysis (ABA) providers explored staff retention. The study found that the rate of pay and hours of supervisions were correlated with decreased turnover. Hence, the decrease in staff turnover should limit the number of mixed messages, especially around sexuality.¹²

Because of staff turnover, it is not practical to attempt to train all staff about sexuality and how to effectively convey accurate sexuality information to people with IDD. Instead, several staff who have shown an interest in sex education, are open to receiving on-going comprehensive sex education, are non-judgmental, respectful of other’s self-identifies and willing to work with professionally trained sex educators should be designated as the agency’s “sex educator” for the residents and staff.

Conclusion

By the time an adult individual moves from their familial home to independent living, a group home, or other residential setting they should have a strong foundation in comprehensive sex education. It is essential to begin to introduce comprehensive sex education at an early age. Lack of such education can create a dangerous gap in understanding the consequences of misinterpretation of sexual nuances and misinformation.

Sex education provides an opportunity for people with IDD to enjoy the same sexual rights and responsibilities as the general population. It can also reduce the risk of sexual victimization and prevent individuals from being charged with sexual offenses.

There is a road map for providing accurate sexual information. It starts with parents and caregivers providing short, positive, age appropriate conversations about the human body, boundaries, and saying “no.” It continues in the educational system with IEP, PCP, and Self-Determination. Each of these domains should provide an opportunity for students to receive comprehensive sex education. The road map becomes more challenging when a person transitions from high school to adulthood. How is accurate, non-judgmental, and sex positive information provided? What are the consequences if not provided? Who monitors the information being provided? To embrace human sexuality in the lives of people with IDD the preceding questions need to be answered. In addition, we must understand and affirm that people with IDD are sexual beings and have the same sexual rights, responsibilities, and risks that people without IDD have.

 

References

Biographies:

Dr. Frantz directs the Institute on Disabilities at Temple University’s criminal justice and sexuality initiatives, including curriculum development, training, and technical assistance at local, state, and national levels. Her area on concentration is the intersection of disabilities, healthy sexuality, sexual violence, and the criminal justice system. She has produced numerous training videos for first responders, family members, victims, and disability service professionals. She authored personal safety curricula, peer reviewed journal articles, book chapters, DVD, and tip sheets. Dr. Frantz was the subject matter consultant for ESPN-60 program on the sexual abuse of athletes with intellectual disabilities. She is a guest faculty member for Aequitas: The National Prosecutors’ Resource on Violence Against Women, and adjunct assistant professor at Temple University. Dr. Frantz earned Master of Science degrees from Villanova University and the London School of Economics and a Doctorate degree from Widener University with a focus in Human Sexuality.

Contact Information

Beverly L Frantz

Project Director, Criminal Justice and Healthy Sexuality Initiatives

Institute on Disabilities, Temple University

215-204-5078

Beverly.frantz@temple.edu

Volume 10 ► Issue 1 ► May 2021

Approaching Sexuality in Service Spaces: An Invitation to Deeper Inquiry

Erin Hipple, Julie Tennille, and Casey Bohrman

Abstract

This article is focused on the complexities of human sexuality and gender identity and couched in vulnerability, inviting readers to reflection. Three academics, one of which continues in practice, present their musings, missteps, and a brief case presentation with a client from a subset of Bondage Discipline Dominance and Submission (BDSM). We conclude with provocative questions for reflection and suggestions for future action and consideration.

___

Conclusion and Recommendations

If you have done your self-exploration and are hoping to feel more comfortable and confident in broaching topics related to intimacy and sexuality with clients, the second and third authors have developed a MI infused training toolkit for having conversations about sexuality and intimacy that may be a helpful resource.⁴  MI prizes empathy and non-judgement and suggests microskills of asking open-ended questions, providing affirmations, reflections, and summaries to create space for clients to share their lived experience. For example, in the above case study, open-ended questions could be used to find out: What would an ideal intimate relationship look like for you? What are the parts of your relationship that you most enjoy and where, if at all, would you like to make changes? The use of affirmations may inspire your clients via your work of pointing out strengths rather than labeling and pathologizing. We cannot overstate how crucial affirmations can be when done genuinely and specifically. For example, just letting clients know you appreciate their willingness to share information about their relationships or affirming the importance BDSM plays in their relationships, can demonstrate non-judgement while showing clients you consistently see their strengths.

Reflections and summaries of what a client has expressed demonstrate that you are deeply listening to the information clients are sharing. A wonderful byproduct of this more mindful way of interacting is that it relieves the pressure from the behavioral health provider to achieve the unrealistic standard of being an objective expert. Instead the focus is on seeing the client as the expert in their own lives, learning how they see their situations. There is a fine balance between asking clients to educate us about their lives and experiences and asking them to educate us about topics such as BDSM. If topics emerge in these conversations that you are unfamiliar with, there are plenty of outside training opportunities on these topics.

The “righting-reflex,” a concept in MI that refers to our natural instinct to correct, give advice without permission, direct, provide warnings when we perceive danger, is one of the quickest ways to signal that you uncomfortable with the topics of sexuality, intimacy, and gender. Without intending to, this reflexive impulse can wall off significant domains of your clients’ lives (not just sexuality).

We suggest a ‘yes, and’ approach to helping clients heal with cultural sensitivity to their sexualities. Reflective work does not have an end point. It can (and sometimes must) happen in parallel with skill building and education. In the spirit of trusting the client’s wisdom in therapy space, we trust your wisdom with regard to an assessment of where your edges are and how you might move beyond them. For some, the temptation to jump to education in lieu of self-reflection might arise. For others, it might feel tempting to remain in self-reflection without seeking education. We encourage the reader to have a willingness to turn your attention to your own processes with a curiosity and willingness to reckon with where your stuck points might be, as well as look to the leadership of those with lived experience rather than relying on the limited lens of mainstream clinical training alone.

References

1.      Ortmann DM, Sprott RA. Sexual Outsiders: Understanding BDSM Sexualities and Communities. Rowman & Littlefield Publishers, 2012.

2.      Rulof P. Ageplay: From Diapers to Diplomas. The Nazca Plains Corporation, 2011.

3.      Tiidenberg K, Paasonen S. Littles: affects and aesthetics in sexual age-play. Sexuality & Culture. 2019;23(2): 375-393.

4.      Tennille J, Bohrman C. Conversations about intimacy and sexuality: A training toolkit using motivational interviewing. Temple University Collaborative on Community Inclusion for Individuals with Psychiatric Disabilities website. http://www.tucollaborative.org/sdm_downloads/sexuality-and-intimacy-toolkit/

Biographies

Erin Hipple, MSW, MA, LCSW, Doctoral Candidate is an Assistant Professor at West Chester University and a trans, queer, polyam, and kink affirming trauma therapist. They use liberation-based, healing-centered frameworks in their teaching, therapy, and activism to help people think creatively, center joy + pleasure, anchor into their inner wisdom, and connect with each other in movement toward justice. Their current research examines activism, self + community care practices, and how these practices interact with larger systems of social service provision.

Julie Tennille, MSW, PhD, LSW, is an Associate Professor in the Graduate Social Work Department at West Chester University. Julie is Principal Investigator and Project Director on a Health Resources Service Administration Behavioral Health Workforce Education and Training grant focused on Integrated Care in medically underserved communities, a member of the Motivational Interviewing Network of Trainers (MINT) and conducts research on the role of intimacy and sexuality in mental health recovery.

Casey Bohrman, MSW, PhD, LSW, Associate Professor in the Graduate Social Work Department at West Chester University. Casey is a member of the Motivational Interviewing Network of Trainers (MINT). Casey has worked in various areas of the mental health system from residential settings, to case management, to mobile crisis. Her areas of scholarship focus on recovery, harm reduction, structural violence and carceral abolition.

Contact Information

Dr. Julie Tennille

West Chester University of Pennsylvania

Graduate Social Work Department

jtennille@wcupa.edu

267-968-317

Volume 10 ► Issue 1 ► May 2021

Building a Socially Fulfilling Life with a Mental Health Diagnosis: A Firsthand Perspective

Joan Moore

Introduction

For a long time, it was difficult for me to find fulfillment from my social life.  It took a lot of work, and I continue working hard to maintain that sense of fulfillment. Professionals gave me a lot of advice on how to achieve this, but the process was very much my own. Sometimes the best path for me was not the path that was recommended. In comparing my experience with other people I've helped, both in my professional role as a Certified Peer Specialist (CPS), and in my personal life, I've noticed that each person has had a unique approach to building a social network they feel good about. People have different social needs, and different ideas of what constitutes social connectedness. Having a mental illness can pose unique social challenges. In this article I will discuss my own personal experience in overcoming these challenges, and the observations I have made throughout the process.

___

I have been learning how to communicate my entire life. Communication is a crucial part of human existence, yet also a major source of frustration for many people. I've always found it interesting that something so fundamental to human life is not necessarily something that comes easily.

I never would have described myself as having poor communication skills, but I often felt mis-understood, which caused me to feel segregated from other people. I began experiencing this feeling of segregation as early as grade school. My relationships with my friends and family were often turbulent, and I felt as though I didn't belong. I believe mental illness played a large role in the feelings of segregation I experienced.

There were some aspects of my social life which were directly impacted by my mental illness. My illness caused severe mood swings, and I was unable to manage my emotions. My explosive displays of emotion made the people around me feel uncomfortable, or afraid. My situation was further aggravated by a personality disorder, in which passive aggressive behavior was my standard response to conflict. This created a huge barrier to my ability to have and maintain a healthy social life, and it was one of the hardest barriers for me to overcome.

For some people, even the treatment process can pose barriers. To effectively manage my mental illness, I had to undergo multiple inpatient stays, and intensive outpatient treatment. Mental health professionals often told me that it would be better for me to avoid making too many friends in the mental health system. There was concern that two recovering individuals might have a negative impact on each other, especially if one was to have a relapse or experience a personal crisis. When an individual is involved in such extensive treatment, there is not a lot of opportunity to meet people outside of the mental health system. For some individuals, the limited ability to meet people outside of the mental health system when one is so deeply embedded in the mental health system can definitely be a barrier.

There have been instances where I felt negatively influenced by another individual in recovery, however, the negative instances have been outweighed by the positive relationships I have experienced. These relationships have been very important to my continued recovery. In the same way that negative can feed off negative, positive can feed off positive. Discouraging people with significant mental illness from being friends with one another might not be the best approach for everyone. I believe that humans are complex and have diverse needs in all aspects of recovery. Some people may benefit from developing better and broader communication and relationship skills instead.

Even though some of the peers in my support system were dealing with significant problems, the relationships were invaluable to me in multiple ways. Being able to help my peers in their recovery process has been a crucial part of my own recovery. Supporting others helped me find meaning in what I had gone through myself. People felt comfortable asking me for help because of my personal experience and watching me move forward in my recovery helped my peers see possibilities for their own lives.

Whether through my work as a Certified Peer Specialist (CPS), as a friend, or as a community member, helping other people manage their mental health has been a huge part of my life. One thing I frequently share with my peers is the thought process I experienced after receiving a diagnosis. In those early years, I believed that I was incapable of getting better, and that I would never be able to manage my emotions outside of an institutional setting. I remember one day, while feeling hopeless in a psychiatric unit, I started wondering: "Why can't I get better? What am I doing wrong?" I knew that people kept telling me I needed to do more to help myself, but I was going to therapy, and completing the homework. I didn't know any other way to help myself. I was feeling bored in my hospital bed, so I asked for a book at the nurse's station. They gave me a cognitive behavioral therapy book for teenagers, and I read it front to back. I became really interested in the idea that I could control my own emotions by changing my thoughts. This was really one of the most important steps early in my recovery. I spent the next few years learning and practicing the skills I obtained in cognitive therapy and dialectical behavior therapy.

After learning healthy and effective interpersonal skills, I realized that my recovery was suddenly moving much faster. Amazingly, finding a better way to interact with other people seemed to be a necessary first step that I had to complete before I could move on with my recovery. This was a life changing realization for me. It became easier for me to manage conflict after learning better communication skills, and rationalization. Rationalization was an important skill I learned from cognitive behavior therapy, and it helped me learn how to challenge the way I thought about things. This made a huge difference in the way I was able to process my interactions with other people. These skills helped me feel less misunderstood and gave me the ability to be assertive about my wants and needs. Once I no longer had to deal with the constant ups and downs of tumultuous relationships, I was able to really focus on getting my other symptoms under control.

Learning better communication skills was an extremely important step, but I still had more work to do. Despite having the skills, I still felt a lack of fulfillment in my social life. I realized some important things at this point. I still had preconceived notions of what a healthy social life was supposed to look like, and I was uncomfortable with the idea of being alone. After some extensive reflection, I realized that I was depending on other people to make me feel happy. This was an impossible expectation because I could not control the behaviors of other people. I had recently started attending college and decided that it would be a good idea for me to get a fresh start in a new town where I didn’t know anyone. This was very scary for me since I had always depended on companionship for my happiness. I realized that the extreme emotional responses I was having to other people’s actions was limiting my ability to progress further in my recovery. This is when I decided that moving somewhere new might be my best option. I wasn't totally cutting myself off from supports but was instead simply gaining some distance.

After moving, my life changed. I became fully engaged in my education, and I was enjoying myself. Even though I had not made many close friends in college, I interacted with a lot of people. I started becoming more confident and found enjoyment in hobbies such as painting and electronics repair. After some time, I realized that I actually enjoyed my alone time a lot. Instead of craving more time with people, I started craving more time by myself. I had finally managed to become comfortable with myself. It wasn't until I reached this point that I felt true fulfillment and social connectedness. In the past, my desperation for human interaction had taken over my ability to maintain healthy boundaries. Finding happiness in solitude is what brought me out of toxic relationships and helped me strengthen the relationships I had with my support network. I was no longer overwhelming my supports with my need for constant companionship.

To this day, I am still learning and improving my communication and socialization skills. I use the knowledge and experience I have gained to help my peers, and I learn from my peers as well. Many people have stories about finding social connectedness, and first-hand testimonies can provide important information to both professionals, and other peers. I believe there is a lot to be gained from peers and professionals sharing stories, knowledge, and working together. We can learn from each other and find new ways to help individuals in recovery learn to thrive in all aspects of their lives.

Biography

I am an individual who has been living with a significant mental illness since childhood. Through years of hard work, I was able to take control of my symptoms, and build a life that I am happy with. I now work as a certified peer support specialist at Unity Family Services in Kittanning, PA. Prior to this I worked for the National Alliance on Mental Illness through the Armstrong/Indiana County Consumer and Family Satisfaction Team for several years. Outside of these professional roles, I have also spent a lot of time helping other individuals with mental illness find ways to manage their symptoms and take back control over their lives.

Contact Information

Joan Moore

724-548-8601

Volume 10 ► Issue 1 ► May 2021

Social Skills for the “Real World”:

Lessons Learned from the Autism Services, Education, Resources and Training (ASERT) Social Skills Groups 

Michael J Murray, MD and Jesse Northridge, LCSW

Abstract

Social skills challenges are one of the core deficits associated with autism spectrum disorder (ASD) and have been consistently identified as an area of high need on the ASERT Needs Assessment. This article reviews important components of effective social skills intervention to help staff intervene and address identified challenges for those with ASD. The ASERT Social Skills Programs are discussed including some of the findings from the adult program. The article concludes with a “Top 10 Tips” list to consider when planning social skills interventions.

Social connectedness is an important factor in overall health and wellness. The COVID-19 pandemic has revealed the wide health disparities in our country and the enhanced vulnerability from poorly integrated social networks that many individuals with Intellectual and Developmental Disabilities (IDD) experience. This article reviews the structural and functional components of strong social networks, including a review of different types of social capital. Suggestions for evaluating and strengthening social networks according to an individual’s expressed goals are offered.

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The 2011 Pennsylvania Autism Needs Assessment conducted by ASERT found social skills training as among the most commonly reported unmet core need across the lifespan.¹ The updated 2018 Pennsylvania Autism Needs Assessment conducted by ASERT revealed an ongoing need for social skills training access, and found that only 43% of individuals spend some time with friends. Time spent with friends varied from a high of 6.8 hours per week for those 0-5 years old to a low of 3.9 hours per week for those 31-35 years old.²

Social skills differences are the core challenge for ASD. Differences with fluently decoding social information and executing appropriate responses can become more impairing as individuals with ASD age given the increase in demands of social interactions and the increasing expectation of mastery of these skills. Adolescents are particularly vulnerable to struggle with social connectedness with peers as their social environment rapidly changes with increased emphasis on social communication (both verbal and non-verbal). Despite these needs, there is little empirical evidence for best practices for improving social interaction skills for adolescents and adults with ASD.³

In recognition of the high need for improving service access and to establish treatment efficacy, ASERT developed manualized social skills interventions for adolescents (ages 13-18) and for young adults (ages 18-30). A literature review found a significant improvement in targeted social skills in 62.5% of studies with adolescents and young adults with ASD that utilized modeling, scripting, direct instruction, prompting, and role play as social skills interventions.⁴ In order to capitalize on these findings, the ASERT social skills groups employed direct instruction utilizing video modeling (both prepared and self-modeling) paired with peer generalization during naturalistic social activities. Outcomes included self-report, caregiver-report, and behavioral observations.

Video modeling is helpful in that it provides a visual representation of the skill in context to a situation. In other words, the discussion expands to not just talking about “how” to greet someone but also “when” and “why.” Verbal and non-verbal communication strategies can be highlighted. A variety of models can be presented demonstrating varying degrees of proficiency (e.g. some examples demonstrating skills done well and some examples where there could be improvement). These variations help the individual gain a deeper understanding of the mechanics of the interaction/social skills. Furthermore, demonstrating alternative skills based on different hierarchies/social roles (e.g. greeting your boss vs. greeting your uncle) and degree of familiarity (e.g. the more structured greeting for someone you are initially meeting vs the typically informal greeting for someone you know well) in the different examples helps develop mastery. Periodically obtaining and viewing self-models where participants watch videos of themselves executing different skills can lead to greater insight and self-monitoring.

Peer generalization not only provides “real-world” practice, it helps promote generalization of skills which can be a significant barrier to social skills intervention.^5,6 Additionally, peer generalization allows for greater social validity of instruction and targeted skills as peers can provide additional feedback to participants regarding the evolution of skills and social expectations. An example of this is the use of popular slang terms and idioms among the peer group.

Finally, targeted skills should match the participant’s goals. The ASERT social skills groups were aimed at individuals who desired more friendships and/or to feel more comfortable in social situations. All were able to use spoken language to maintain conversations with others. This curriculum focused on verbal and non-verbal social conversation skills. This curriculum would not be appropriate for someone who communicated differently or whose goals were different such as learning to cope better with sensory hypersensitivities in social interactions. Furthermore, outcome measures should reflect these goals. As improved non-verbal social communication was one of the things targeted in the pilot study of this intervention, amount of eye contact in a 5-minute interaction with a novel peer was tracked as an outcome measure. As shown in Figure 1, the amount of eye contact—shown in green—did statistically and significantly improve (p=.002) for the 29 study participants from pre-intervention (average of 144 seconds) to post-intervention (average of 177 seconds) to 3-month follow-up (average of 186 seconds).

However, when thinking of communication and social impact, eye contact is even more important when you are asking a question during a social interaction. Furthermore, doing so while having a positive affect (smiling or conveying interest) is even more impactful as it lets the other person know there is interest in their response. This reflects the “when” and “why” of social skills mentioned previously. This high-impact eye contact—shown in blue—also demonstrated statistically and significant (p=<.001) growth across the three 5-minute observation periods. Preintervention the study participants averaged 21 seconds of this high-impact communication. This increased to an average of 37 seconds and, perhaps most encouraging, this increased to an average of 87 seconds at the 3-month follow-up observation. These findings demonstrate that there was substantial growth in this skill following their participation in the group and indicate successful generalization of skills.

Though this data requires a lot of time and effort to collect and analyze, its principles can be applied to clinical practice. For instance, if an individual has identified improving their ability to maintain social conversations as a goal, measuring the length of conversation with peers would provide some feedback on progress—the “how.” However, working through the “when” and “why” of this goal with the individual may reveal hopes to use this skill to develop more friendships. In that situation, a more nuanced— “high-impact”—way of measuring progress might be determined which would not take a lot of extra effort. Progress and success could be measured through the length of dialogue and number of open-ended questions the individual asked peers. Increasing both conversation duration and the number of asked open-ended questions may effectively convey interest in the other person. Similarly, increasing conversation duration but declining number of asked questions may provide the individual with valuable information as to what may be going wrong in their attempts at establishing friendships.

The following are suggestions for enhancing the impact of social skills interventions. While they are based on the experience of the ASERT team conducting social skills groups for adolescents and adults with ASD, most—if not all—of them are generalizable to other social skills challenges not related to ASD.

In summary, social skill interventions are an area of high need for many individuals with ASD and other neurodevelopmental needs, and these needs typically persist across the lifespan. Additionally, social skills increase in complexity and nuance as individuals age; skills interventions need to reflect this. Helping individuals understand the proper context of skills expression—the “when” and “why”—can help promote generalization and adaptive functioning. Consider the power of video modeling, the critical benefit of peer generalization and other social exposures, and crafting outcome measures which truly reflect the skill’s socially valid expression when working on social skills.  These efforts are time well-spent. Improved socially functioning can be a critical factor in increasing adaptive behaviors, greater community participation, more robust person-centered goal-setting, and risk reduction for victimization.

References

1.      Pennsylvania Autism Needs Assessment: A Survey of Individuals and Families Living with Autism, Report #2: Service Needs. ASERT website. https://needs.paautism.org/wp-content/uploads/2020/05/Needs-Assess_ServiceNeeds_Sept-2011_M.pdf. Published 2011. Accessed May 4, 2021.

2.       Pennsylvania Autism Needs Assessment: A Survey of Individuals and Families Living with Autism, Explore the Data: Social & Spirituality. ASERT website. https://needs.paautism.org/explore-the-data/social-spirituality/.  Published 2018. Accessed May 4, 2021.

3.      Reichow B, Volkmar F. Social skills Interventions for individuals with autism: Evaluation for evidence-based practices within a best evidence synthesis framework. J Autism Dev Disord. 2010;40(2):149-166.

4.      Roth M, Gillis J, DiGennaro RF. A meta-analysis of behavioral interventions for adolescents and adults with autism spectrum disorders. J Behav Educ. 2013;23(1):258-286.

5.      Rao P, Beidel D, Murray M. Social skills interventions for children with Asperger’s syndrome or high-functioning autism: A review and recommendations. J Autism Dev Disord. 2008;38(2):353-361.

6.      White S, Keonig K, Scahill L. Social skills development in children with autism spectrum disorders: A review of the intervention research. J Autism Dev Disord. 2007;37(10):1858-1868.

7.      Duchenne GB. The Mechanism of Human Facial Expression. New York, NY: Cambridge University Press; 1990. Maslow AH. A theory of human motivation. Psychol Rev. 1943;50(4):370–396.

8.      Maslow AH. A theory of human motivation. Psychol Rev. 1943;50(4):370–396.

Biography

Michael Murray, MD is an associate professor of Psychiatry and Behavioral Health at Penn State College of Medicine. He is the director of the division of Autism Services for Penn State Health and the director of the central region ASERT collaborative. He is the creator of the Multi-Media Social Skills Program for Adolescents and the Multi-Media Social Skills Program for Adults—the ASERT social skills curriculums.

Jesse Northridge, LCSW is a licensed clinical social worker. He is part of the clinical team at the Autism and Developmental Disorders Clinic in the Department of Psychiatry for Penn State Health. In addition, he is a team member for the central region ASERT collaborative. He is the lead therapist for the ASERT social skills groups.

Contact Information

Michael J. Murray, MD

Penn State Health / Central ASERT

717-531-1115