Sunday, February 6, 2011

How to teach about love, sex and relationships to people with high functioning Autism Spectrum Disorder (ASD)

For the past year and a half I have been working with a teenage girl on the autism spectrum. Although I have had no formal education with developmental disabilities, I have learned along the way many things about autism, and find myself quite interested and passionate about it. Through my preliminary research that I have done so far, the only information out there for sexuality for people with disabilities concentrates on sexual abuse prevention. While preventing sexual abuse among people with disabilities (and in the general population) is important, they seem to forget that people with disabilities are sexual beings as well and may have the desire to have a sexual relationship with the same or opposite sex. Developing relationships requires a certain level of communication skill in order to do things like flirt and feel confident around someone you like. For typical people, having a conversation or flirting is something that generally comes naturally, but for people with autism this is a skill that needs to be taught and practiced.

For those of you who are not familiar with ASD, I will go over some basic information about the disorder: According to the United States Autism and Asperger Association, ASD is a “pervasive developmental disorder” that is generally characterized by impairment in communication skills, such as lack of eye contact, facial expressions and gestures that “regulate social interaction” (usautism.org).
Important things to know about ASD:
1.     Asperger’s is a high functioning form of ASD (although much debate surrounds whether or not Asperger’s should be on the ASD spectrum, for the purpose of this blog Asperger’s is a form of high functioning ASD). People with Asperger’s usually are of average intelligence or above average intelligence (try not to think of Rain Man or savants, that is usually not the case).
2.     People with Asperger’s don’t have a lack of interest in social communication, rather, they have trouble with making effective social connections, thus making friends and dating is difficult. They often misread social communication, which makes their responses and social interactions seem odd to others (Susan Stokes, 2011).

Sexuality education would serve two main purposes: the first, is educational and used to help them with their social skills, and the second, is to increase their confidence in social interactions. As educators, it is important for us to know the learning style’s and strength’s and weaknesses of people with ASD, and be sure to implement these concepts when teaching them about sexuality and relationships, and of course adapt the level to their cognitive ability:
1.     People with high functioning ASD usually have strong visual processing skills, so using a lot of visual teaching methods is important (Susan Stokes, 2011).
2.     Many times, teens with ASD exhibit low self-esteem; by adolescence they become very aware of social differences between themselves and their peers. It is important for educators to give tasks that are in small tangible steps and will increase their confidence level in eventually perusing more difficult social tasks (Susan Stokes, 2011).

Educational techniques to use:
1.     People with Autism are often uncomfortable with change and are generally stressed and scared when asked to perform a new task. I find it helpful to break down new tasks into smaller steps. Breaking the tasks down into small steps that they can accomplish will increase their confidence. In addition, it will make the new task seem less overwhelming and reduce their stress levels.
2. Typically developed people have certain social scripts that they have learned over the years through observing their surroundings where they learn how to behave in certain situations and places. People with ASD, typically need to be taught these social scripts, writing them down or drawing them out is helpful so that they can read and re-read them as many times as they need to (Stokes, 2011).
3. Many people with ASD have organizational difficulties, in order to help them learn what goes first, second, third, etc. Comic strips cut up into pieces will allow the students to have a visual representation of these social scripts that is broken down into steps, that they can put in the right order, which will help them practice the order in which social interactions occur (Stokes, 2011).
4. Role playing is a great technique for the students to practice the new skills and social scripts they learned in a safe environment (Stokes, 2011).
5. One of the typical features of Autism is the inability or difficulty in reading social cues such as body language, facial expressions, and tone of voice. Social media such as texting, instant messaging and Facebooking can be a great way for people on the autism spectrum to communicate with peers. Social media communication is not as socially demanding as face-to-face interaction, it does not involve the interpretation of social cues and making eye contact (Weisner & Volkmar, 2009).

 ** a really great book about teenage girls with ASD is "girl growing up on the autism spectrum: what parents and professionals should know about the pre-teen and teenage years" by Shana Nichols, Gina Marie Moravcik and Samara Pulver Tenenbaum.
this is a good book to learn specifically about girls with ASD, it is pretty comprehensive, it talks about friends, schools and even sexuality. most books and material out there is about boys (statistically there are  more boys with ASD than girls), but research shows that girls and boys manifest ASD symptoms differently, so it is possible that those statistics are incorrect. and it is also important to remember to adapt curriculum to the gender of the participant.

References
Weisner, L.A., and Volkmar, F.R (2009). A practical guide to Autism: What every parent, family member, and teacher needs to know. Honoken, NJ: John Wiley & Sons, Inc.
Stokes, S. (2011). Special Education Services: Intervention and Strategies for success. Children with Asperger’s Syndrom: Characteristics/learning styles and intervention strategies. Retrieved from http://www.specialed.us/autism/index2.htm
usautism.org


Ettie

14 comments:

  1. Thanks For The Nice Information
    Good Work

    ReplyDelete
  2. Ettie,
    Good work on your blog! I didn't realize this topic was such a passion for you, but I think its an important topic to address. I don't remember if we were in the same 593 class but an older Widener student came to our class and made us engage in an activity that I think would be really helpful for you in your teaching.
    The activity was to invent a scenario (ie: going to the mall to buy a virbator) and have the students think of ways to get there and purchase the vibrator without explicitly telling their caretaker (the teacher) who did not think the disabled individual should be engaging in sexual activities because 'disabled people aren't sexual' to the caretaker. The facilitator had the class line up, and each person in the class would take turns asking questions (like, Can we go to the mall today?) and the teacher would reply 'yes' or 'no'. If she said yes, you could take a step forward and if she said no, you would have to take a step back. The point of the activity was to make the students understand how difficult it could be for a disabled person to engage in healthy sexual activities under the control of a less sexually liberated caretaker. The activity worked!
    It really opened my eyes to the difficulties that those not within the dominant paradigm face when trying to express their sexuality and its really unfortunate because everyone should have the right to be sexual!

    ReplyDelete
  3. I really enjoyed reading this both due to personal interest (I was very close to pursuing a Master’s in Special Education), and your genuine investment in this topic made it all the better! A couple of years ago I shadowed the head of the special education department, Ms. Kemper, at the middle school where my mom teaches in Lancaster, PA. It was a wonderful, challenging, eye-opening experience. Ms. Kemper informed me that her students (grades 6 through 8, and all different levels of autism) had begun to ask questions and showed curiosity regarding their bodies and the changes that were occurring. I learned that with autistic children, teaching with visual aids is often the best option. Also, making a topic into a personal story helps the child’s learning process. For example, a picture book with descriptive sentences such as “I will get taller,” “I will get my period,” and “my body shape will change” could be used to teach these adolescents about the changes in their bodies that they will experience during puberty. This also instills pride in the learners! Adapting stories to the individual learner would also be helpful in teaching things like personal hygiene, sexual awareness (and what is acceptable and not acceptable), boundaries, contraception and STI prevention, how to have healthy, fulfilling relationships, and so on. It breaks my heart and angers me when I hear of any particular group being discounted as individuals who are not capable or deserving of having relationships and healthy sex lives.

    ReplyDelete
  4. Thanks for the post Ettie! I have no experience with ASD and am always seeking more information on the subject so I greatly appreciate your insight, experience and research in this area. I especially appreciate the educational techniques you mentioned. This blog made me curious about other resources out there so I started at the website you referenced and found some others. The National Institute of Neurological Disorders and Stroke, through the National Institutes of Health, has a nice list of organizations and websites for more information about ASD. From there, I went to the Autism Speaks website which seemed to focus on family resources and featured a great blog. On both of these websites, however, there seemed to be a lack of information regarding sexuality education(go figure). I am glad you referenced the books and educational techniques in your blog and I have been attempting to find other resources regarding sexuality education for people with autism. There were some articles at the Autism Society of America which discussed sexuality and I was able to find the Declaration on the Human Rights of Persons with Autism Spectrum Disorders which specifically acknowledges the 'right to sexual and other relationships’.

    After much searching I found a great article, Sexuality Instruction and Autism Spectrum Disorders, authored by Peter Gerhardt of the Autism Society. What I appreciated most about this article was the author’s emphasis on being proactive in teaching sexuality as opposed to waiting until an issue arises. He also suggests focusing on the social dimension of sexuality which is integral for people with ASD. Gerhardt writes, “A more appropriate and effective approach is to address sexuality as just another, albeit complex, instructional focus, the teaching of which promotes the ability of the learner to be safer, more independent and more integrated into his or her own community, resulting in a more positive quality of life.” I felt that this article had a sex positive approach to sexuality education and some great tips for teaching people with ASD. You can read the full article here:
    www.education.com/reference/article/sexuality-instruction-autism-ASD/

    Other websites I found helpful for general information about ASD are provided below:

    www.ninds.nih.gov/disorders/autism/detail_autism.htm

    www.autismspeaks.org/

    www.autism-society.org/

    ReplyDelete
  5. Great job on the blog, Ettie! I don't have much experience working with individuals with developmental disabilities, but I was really impressed with the educational strategies you wrote about. Very thoughtful and creative ways to reach the given population.

    While I don't have much experience working with those who have developmental disabilities, one of my very first sexuality education mentors (back when I was interning in the Education & Training department at Planned Parenthood in CT) did a LOT of work with DD sexuality education. I remember feeling very.... surprised? taken aback? naive? something... when I first started becoming familiar with the issue. I guess I just never realized the need for such education - but quickly realized the need was so great! The need for sexuality education for those with DD might even be greater than for others because these individuals are not able to learn about it as easily as most people do from peers, books, movies, etc.

    Looking back in my old materials from a training I went to during my time at PP about working with people with DDs, I found something that might be useful. It was called the 5 P’s in helping people develop new behaviors:

    1. Practice: Give them the opportunity to practice what they need to work on, rather than avoiding these situations
    2. Predict: Prior to a situation, talk about what needs to happen or will be happening
    3. Parallel Talk: Talk through a situation, as it is happening, identifying social cuse and processing these for the person
    4. Positive Talk: State desired outcomes as a way of reinforcing
    5. Praise: Verbally reward someone when they succeed

    To give credit where credit’s due, these were given at a Planned Parenthood of Connecticut professional development training in 2005 called, “Touch, Privacy and Boundaries in Working with People with Developmental Disabilities”.

    ReplyDelete
  6. Great job, Ettie! I, too, believe that there is a great need for teaching about love, sex and relationships to people with developmental disabilities. I also agree that this is often an overshadowed topic because most people are impervious to the fact that individuals with special needs are still sexual beings despite having disabilities.

    One additional comment I'd like to make is that sexual abuse prevention for populations with developmental disabilities is extremely important because these individuals are at a higher risk for sexual abuse due to the fact that they are more vulnerable than those without disabilities.

    I learned about the unique need for sexual abuse prevention in this population through a workshop entitled "Protecting Our Children: Special Considerations for Children with Special Needs." This lesson was conducted by Courtney Holmes, MFT, of Blue Sky Bridge in Boulder, Colorado. I have been working as an intern for this agency - which serves as an advocacy organization for children survivors of sexual abuse.

    You may be pleased to know that one of the topics in the presentation was about how many individuals with special needs are not considered sexual beings. Courtney spent a portion of the workshop explaining some differences between more typical sexual behavior and warning signs of potential abuse. She made it a point to recognize that everyone has the potential to be a sexual being - regardless of ability, disability, or age.

    Prevention education is currently a major focus of Blue Sky Bridge and I have been helping with their pilot program to reach out to the community in various aspects. I do know that not all child sexual abuse prevention education brings focus on the fact that children (with or without disabilities) can be sexual beings as a part of typical human development. It is refreshing to know that the organization I'm working with takes this into consideration and implements this information into training programs aimed to prevent sexual abuse. Perhaps with more understanding of childhood sexuality, prevention education can become more effective.

    ReplyDelete
  7. Ettie,

    Really great information and an area where I think we will see a great need for trained sexuality educators over the next few years. I was written into a grant this past year that was a sexual abuse prevention program for autistic teens. A sexual assault agency currently delivers the curriculum but started to notice that because many of the participants had trouble thinking abstractly, that they first needed good and concrete sexuality education BEFORE they could truly teach them about sexual abuse. I was so pleased to hear that they had come to this conclusion and were trying to seek out a means to incorporate basic sexuality education into the curriculum. Unfortunately, they did not receive the grant but continue to seek other funding sources to make the expansion happen. I think developing curricula aimed at this population, specifically comprehensive curricula, is a great niche opportunity for those with experience working with this population.

    ReplyDelete
  8. This is really a great blog and I enjoyed the information given about Love, sex and Relationships Thank you for the useful detailed information.

    ReplyDelete
  9. This comment has been removed by the author.

    ReplyDelete
  10. Ettie: thanks for posting about sex ed and ASD. My Community Partner work for 625 and 626 focuses on teaching sexuality to adolescents with learning disabilities. Some of the students I will be teaching have ASD. One aspect I had never considered prior to researching this topic was that open and honest communication with learning disabled youth about sexuality rarely happens in our society (Szollos & McCabe, 1995). Rather, the very avoidance of sexuality around the learning disabled has contributed to a disabled sexual role as well - often an asexual one (Doyle, 2008; Keshav & Huberman, 2006; Koch, 1992; Rousso, 1982). Parents, families, and society sometimes recognize this but they are uncomfortable with disabled sexuality and want it to just ‘go away’ as they are unsure of how to handle the issues. This does not go unnoticed as Finger (1992), a researcher who identifies as learning disabled, pointed out succinctly: “Sexuality is often the source of our deepest oppression; it is also often the source of our deepest pain. It’s easier for us to talk about - and formulate strategies for changing - discrimination in employment, education, and housing than to talk about our exclusion from sexuality and reproduction” (p. 9).
    In addition, media’s contributing influence to the learning disabled’s asexuality and low self-esteem is large and detrimental affecting both the way able-bodied youth view individuals with disabilities and the manner in which youth within the disability community view themselves (Mona & Gardos, 2000). All media heroes and heroines are perfectly shaped, able-bodied, sexually attractive persons who win over their desired love interest. Youth with learning disabilities are conspicuously missing. The media generally portrays gender as follows: males are strong and virile; females are attractive and sexy. These messages are incongruent with many youth with LD and the message received is they are not part of the group. These messages increase the difficulty of the learning disabled’s ability to acquire a proper perspective on their disability, to demystify sexuality, to develop a positive body image, to master social skills, and to understand their own sexual functions (Rousso, 1982; Mona & Gardos, 2000). Recently, Glee has added to their cast actors with Down syndrome who still remain somewhat asexual. All the same, I applaud them for their efforts in initiating the portrayal of a variety of personalities within our culture to the masses.
    I am glad you are working with this teenager. Take a look at some of the research I have referenced as it has provided me with a wealth of information regarding teaching adolescents with learning disabilities.
    References:
    Doyle, J. (2008). Improving sexual health education for young people with learning disabilities. Paediatric Nursing, 20(4), 26-28. Retrieved from Academic Search Premier database.
    Finger, A. (1992). Forbidden fruit. New Internationalist, 233, 8-10.
    Keshav, D., & Huberman, B. (2006). Sex education for physically, emotionally, and mentally challenged youth. Advocates For Youth. Retrieved from: http:// www.advocatesforyouth.org/index.php/publications/479.html
    Koch, P. B. (1992). Integrating cognitive, affective, and behavioral approaches into learning experience for sexuality education. In J. T. Sears (Ed.). Sexuality and the Curriculum: The politics and practices of sexuality education (pp.253-266). NY: Teachers College Press.
    Mona, L. R., & Gardos, P. S. (2000). Disabled sexual partners. In L. T. Szuchman & F. Muscarella (Eds.). Psychological perspectives on human sexuality. NY: John Wiley & Sons.
    Roussa, H. (1984). Disabled yet intact: Guidelines for work with congenitally disabled youngsters and their parents. Child and Adolescent Social Work, 1(4), 254-269
    Szollos, A. A., & McCabe, M. P. (1995). The sexuality of people with mild intellectual disability. Australia and New Zealand Journal of Developmental Disabilities, 20, 205-222.

    ReplyDelete
  11. thank you for sharing this to us. very informative.

    ReplyDelete
  12. The gendered aspect of autism is very interesting. I would love to learn more about that and how it might affect teaching sex ed to kids with autism.

    I have mixed feelings about the role of sexual abuse prevention work for people with disabilities. I recognize that people with special needs are often extremely vulnerable to sexual abuse and assault, and therefore it’s a crucial topic to cover. However, if I compare it to rape prevention education done with young girls, I tend to see it as potentially damaging to one’s sense of sexual agency. So much work done around the sexuality of young women is about rape and sexual assault. With such a heavy emphasis on these topics, women’s sexuality comes across as passive, vulnerable, and dangerous. (Not to mention that a woman’s actions have NOTHING to do with if a man rapes her or not, but that’s a topic for another time…)

    To bring it back to the original post, I fear that the same result could occur. People with special needs are already de-sexualized by our culture. Focusing so much on assault prevention may further paint this population as passive and vulnerable. But since I don’t have any experience working with this population, nor have I studied this issue, it is hard for me to make a definitive statement on what works best.

    Vicki- I’ve been trying to think of a movie or television show that portrays a person with special needs in a romantic or sexual relationship. All I can think of is the movie The Other Sister from 1999. It’s been a while since I’ve seen it so I can’t remember how the relationship between two characters with Down’s Syndrome was portrayed. I know that there was humor, but I can’t recall if it was general humor or humor at the expense of the Down’s Syndrome characters.

    ReplyDelete
  13. I have done a decent amount of research into teaching developmentaly, socially and physically disabled peoples sexuality education and the thing that frustrates me, besides the lack of it in general, is the grouping it all together. It would be so difficult to go into a special needs classroom and talk about sexuality. There are so many different learning differences in that setting that it would be all but impossible. I really appreciate tailoring sexuality and all of its aspects to different syndroms. When we teach sexuality education to different groups such as religious groups, mens groups, teens or aging adults, we don't apply the same teaching methods or the same content, so we shouldn't for different learning abilities either. Each syndrom or disability perceives their sexuality in their own way, so its important to tailor our methods thus. Ettie, I appreciate you bringing your experience to us on this topic. Few people, even in our field, have experience teaching sexuality to specific disabled populations. I honestly think it would be great to have sexuality educators that are trained and familiar with a few disabled populations that could go into households, care centers, schools and into nursing and care schools to educate care takers and guardians about their particular sexuality needs and how to best address them. Thanks Ettie!!!

    ReplyDelete
  14. Too often, people who are identified with mental disabilities are not viewed as sexual beings. The truth of the matter is that we are all sexual beings. In working with people on the Autisim Spectrum cover a diverse range within cognative abilities. Thus, in a time in which sexual abusers are a social problem it is optimal that all individuals gain an understanding of welcomed age appropriate sexual expression; and, healthy sexual behaviors in terms of STI transmission and HIV prevention is paramount. I applaud your recognition of the need of sexual education for this population. Well done!
    I'm off to see the wizard...
    Melvin

    ReplyDelete