- Without further ado, Dr. Jason Travers is with us today, and Dr. Travers is an assistant professor and a behavior analyst in the Department of Special Education at Kansas University, and he serves as the department's coordinator for the autism degree and certificate programs there.
Dr. Travers is a former public school special education teacher for learners with autism, and he went on to earn his doctorate at the University of Nevada, Las Vegas.
His research interests include the benefits of effective technology on academic, communicative, and social behavioral skills for learners with autism, sexuality education, and advancing evidence-based practices in special education.
Dr. Travers is the recipient of the inaugural Tom E. C. Smith Early Career Award, from the CEC Division of Autism and Developmental Disabilities.
And he's also served on the editorial boards for a number of top journals, including Remedial and Special Education, Focus on Autism and Other Developmental Disorders, Education and Training in Autism and Developmental Disabilities, and the Journal of Special Education Technology.
So Dr. Travers, it's a pleasure to have you with us, and I will turn it over to you.
- Right, well thank you so much for that wonderful introduction.
I'm happy to have the opportunity to share with all of you today some information about sexuality education for learners with autism.
This is a topic that I became interested in while I was a doctoral student in my hometown at UNLB in Las Vegas.
And it started with a paper that I wrote for an ethics course in special education, and I was really surprised, not just about the dearth of literature related to sexuality education for individuals with autism and other developmental disabilities, but I was also surprised to learn how much about sexuality education I didn't really, I was not really aware of.
And so I sort of began learning about comprehensive sexuality education, which is different from the traditional sex education that's provided by schools in the United States, and the implications of providing or withholding sexuality education to learners with autism.
As I began to develop a reputation for presenting and writing on this topic, it became quite clear to me that a number of teachers, primarily in the secondary settings, middle school and high school, were really dealing with a lot of difficult sorts of behaviors and unsure about how to provide sexuality education, and just dealing with inappropriate masturbation, among other things, and just really in search of solutions.
And so what I hope to share with you today are some barriers to sexuality education, as well as a rationale for providing sexuality education.
And that's really, you might wonder, just get to the meat, I want to know what to do, and oftentimes I think that's a valid request for presentations.
Teachers want make and take, and stuff that can put to work on Monday morning.
I think sexuality is a bit different, in a sense that oftentimes the first challenge is not figuring out what intervention to use, but first recognizing that an intervention is needed, and convincing people on the child's educational team to invest in an intervention, and that's particularly problematic in the area of sexuality education.
So I want to talk a little bit about barriers and the rationale for providing sexuality education across the lifespan, beginning in early childhood, up to adulthood, and after the child leaves school.
Then I'll get into some details about what to teach.
I'll talk about what comprehensive sexuality education is comprised of, and what it's useful for, in terms of preventing abuse and inappropriate behavior, and promoting self-determination.
After that, I'll turn to some intervention strategies that are derived from evidence-based practices, and I'll share with you some examples of the sorts of things you might find useful, or that you might generate or adapt for your own unique needs, and then I'll finish with IEP team considerations and decision-making guidelines.
Much of the content that I will cover is included in the folder that was shared with you, the Google Drive folder.
You'll find various articles that I've written on this topic, as well as a curriculum evaluation tool that I developed with a colleague.
And if you have additional needs or specific items that you're interested in acquiring, you're certainly welcome to email me at my University of Kansas email address.
I'm happy to respond and share other materials with folks who are interested.
Oh, and before I get into barriers, just to reiterate the point that you can use the chat box to ask questions.
You should have received an email that included a PowerPoint handout for today's webinar, and in the text of that email, there should be a link, of Bitly link, a very short hyperlink, that when clicked on will take you directly to the Google Drive folder, with the various PDFs in it.
If you did not receive it, feel free to contact Shelly, and then she'll make sure that you get the email with the link and the attachment.
So barriers, and forgive me for being a typical American and sharing with you a perspective that's largely rooted in experiences of the United States.
I'm not very familiar with sexuality education in Canada, what the laws are, or what the practices are, or what the beliefs are about sexuality education, but in the United States, sexuality continues to be a very taboo topic, particularly in schools.
And I find this to be quite interesting and somewhat odd, in a sense that we are inundated by sexuality in various sorts of media.
We see content on television, in films, in YouTube and other social media applications, print media in the checkout line at the grocery store.
We are exposed to sexual imagery at a pretty impressive rate, when you consider the fact that many people feel uncomfortable talking about sexuality, and even more feel uncomfortable about teaching sexuality to their children or their students.
So I think one major barrier to sexuality education is just our general perceptions and attitudes towards human sexuality in society.
I also think that a major barrier to sex education, sexuality education for learners with autism is the perception or reliance on informal learning experiences as a primary source for learning about sexuality.
Many adolescents, teenagers, and young adults learn about sexuality through informal experiences with their friends or partners that they may have, a first girlfriend or boyfriend, and probably through different content on the internet.
And so much of that content from on the internet, as well as information that is acquired informally through through experience, tends to be inaccurate and misleading, and sometimes generates a lot of fear and concern, and can also put individuals at risk for dangerous sexual behavior.
And the reliance on informal learning experiences, or an assumption that people will learn about sexuality by these informal experiences, is a barrier to formal sexuality education.
And when you layer on top of that the fact that individuals with autism do not generally learn from informal social experiences, then you can understand that these assumptions do not only not apply to individuals with autism, but it also may result in people overlooking the importance of providing sexuality education early on and throughout the lifespan, while the person's in school.
There are also problems with the descriptions of what sex education is.
Sex education and sexuality education are two different things, although the terms may be used interchangeably.
Sex education has to do primarily with sexual reproduction and sexual health, like the prevention of sexually transmitted diseases and contraception.
Also some basic anatomy and physiology, but it is not nearly as in-depth as sexuality education, which encompasses human development, relationships, culture, and gender, and society, and a whole host of other topics that I'll share with you shortly.
So you have all of those barriers, and then factor in the beliefs and stereotypes about sexuality and disability.
That quote, back in the day, a person with one of the coolest names ever Wolf Wolfensberger, I'm not sure if everybody's familiar with Wolfensberger, but he was instrumental in the deinstitutionalization movement in the United States.
And he was on the first presidential commission on mental retardation, which was commissioned by President Kennedy, at the time.
And he wrote a paper that outlined these concepts of deviancy, or the ways that society viewed individuals with disability as being deviant or different from society in general.
And much of these beliefs about people with disabilities, and this concept of deviancy stems from a history of, or a legacy of eugenics.
Eugenics is a the pseudo-scientific attempt to try to, quote, cleanse the gene pool, and this gave rise to sort of a medicalization of disability, and resulted in mass institutionalization.
And that relates to this first concept of the individual with a disability as a diseased organism.
Someone whose disability is contagious and could be spread to other individuals, and is therefore deserving of, or should be isolated, or have limited contact with other individuals who might then perpetuate disability or an unclean gene pool.
We also have sorts of things like the individual as a sub human organism.
The term vegetable or vegetative state is a good example of how that concept is still alive in some corners of society these days.
We also have the individual as a menace to society, and this relates to the belief or the stereotype, mythical or inaccurate belief, that a person with a disability, a person with autism, for example, will engage in criminal, hyper-sexual and impulsive behavior, and that providing them with sex education might exacerbate or at least foster those sorts of behaviors that are dangerous or compromise the wellbeing of individuals in our society.
We also have the belief that the person with the disability should be the object of pity, and so in this way, you could think about sexuality as a burden, like caring for your menstrual cycle, or having limited or no sexual partners, or having difficulty achieving climax during masturbation.
Those are all reasons to feel sorry and have pity for the individual, and this taken to the extreme, oftentimes, can result in people using medication to stave off adolescence and adulthood.
Hormone injections, and that sort of thing, and that's been in the popular media recently in the United States.
I think there was a story in the New York Times about a family who sought medical care for their daughter, so that she could get hormone injections to keep her small and childlike forever, rather than developing into an adult, and it was the topic of great controversy and discussion.
The person is a burden of charity.
There's social supports in the United States, probably not nearly as well as they are in Canada, but generally the perception is that the individual should be provided with supports that allow them to access a basic standard of living.
And sexuality, relationships, parenthood, and child rearing, those sorts of things may be deemed a luxury that are not applicable to individuals with autism.
The individual as a holy innocent relates to deep religious beliefs that are tied to purity and virginity, and also the perpetual and common belief about the shameful and sinful nature of premarital sex, or masturbation, and those sorts of things.
And so sexuality education may be withheld due to beliefs related to the individual as a holy innocent.
And I think lastly, the individual as an object of ridicule relates to the person, teacher or parents having some fear that talking about sexuality or teaching the person about sexuality may open them up to, or make them more likely to be subjected to ridicule from other individuals.
If a person has a relationship and they're seen holding hands with another individual in the community, then that may put them at risk for some sort of hate crime, or at least some discrimination.
Oftentimes these collections of stereotypes, although identified in the late 1960s, are still applicable today, in many ways, and I think they manifest in avenues related to sexuality education.
There are also some common beliefs about people with autism.
There's a belief that they prefer to be alone, and therefore they're uninterested or disinterested in sexuality or sexual development.
They're asexual individuals.
And the belief that individuals with autism prefer to be alone is oftentimes the mischaracterization of an outcome, due to a lack of skill.
So if a person doesn't know how to do algebra, and you don't see them doing algebra, then you might conclude they prefer not to do algebra, when in fact the skill that's lacking is just a person doesn't know how to, and therefore doesn't attempt to.
So the belief that individuals with autism prefer to be alone often is a reflection of an insufficient social competence and social skills, and reflect the need for those sorts of supports, so the individual can access relationships in a way that is consistent with their actual desires.
The flip side of that is that individuals with autism may be viewed as being incapable of controlling or learning about their sexuality.
That exposing them to different information or content about sexuality may turn them into sort of hypersexual individuals, in ways that are inappropriate or deviant from social norms.
There's also the beliefs that individuals with autism or other developmental disabilities, for that matter, are perpetually immature or eternal children, and children shouldn't learn about the sorts of things that adults learn about, with regard to sexuality.
And this may result in the withholding of sexuality education, when in fact individuals with autism have typical physical development, in most cases, and are interested in relationships, and express their sexuality in typical ways, and are very much deserving and entitled to sexuality education.
And I think the last myth is that there's this presumption that all individuals with with autism or other developmental disabilities are heterosexual, and this can be problem when the individual seems interested in a same-sex partner, or is interested in having relationships with individuals who are of the same sex, romantic relationships, and the individual who's in charge of providing the sexuality education, or supporting that person's sexual development has a personal belief that is inconsistent with lesbian, gay, bisexual, transgender sort of quote lifestyle.
So this common belief that individuals with autism are all heterosexual may result in lack of sufficient sexuality education, as it relates to their sexual orientation, their gender identity and their preferences, when it comes to sexual partners.
So now that I've given you some reasons why people avoid providing sexuality education, let me go over some reasons why sexuality education is necessary for individuals with autism.
The first issue is just related to sexual abuse prevention and reporting.
We're not entirely clear how common sexual abuse is in the autism community.
We don't know how many children with autism are subjected to sexual abuse.
There are some assumptions that it may be more prevalent than in the general population, but the data just aren't very clear about that.
Nevertheless, I think it's a safe assumption to say that individuals with autism are at an increased risk for abuse, and this is because they're unable to provide reports to parents about sexual abuse that may be occurring, or they may not be able to inform professionals or law enforcement.
And this relates primarily to the communication deficits that are a core feature of autism.
And in fact, it may motivate a predator to seek out a victim with autism, who has limited communication abilities, simply because it will preserve that person's ability to abuse them, and that individual will not be able to report on the abuse.
The second piece related to this is, it may be that the individual with autism is not aware that what's happening to them is wrong, and so they're not aware that it could be reported.
They're not aware of the ways to protect themselves, and they're not aware of ways to prevent abuse from happening.
So providing sex education to prevent and report sexual abuse is, I think, a sound rationale for providing it.
There are also the negative side effects associated with sexual abuse, like personal and physical distress, emotional distress experienced by the victim, as well as failure or delayed, or even regressive development of behavioral communication, academic and social skills.
So when these things are happening, many deleterious effects associated with sexual abuse that people with autism are not exempt from, simply because they may not understand what's happening to them.
And the lack of reporting may contribute to a greater prevalence of sexual abuse in the autism community, because the offender is never charged, investigated or convicted, and victimization of the specific individual, and perhaps others, may continue to occur.
People with autism also are deserving of sexuality education because they have a right to relationships.
They have a right to be married, and they have a right to experience parenthood.
And so these are good reasons for providing sexuality education, because sexuality education, comprehensive sexuality education addresses issues around acquaintances, platonic relationships, romantic relationships, and longterm life commitments like marriage and life partnering.
We should not withhold that right from individuals with autism, simply because they have a disability, and we should provide sexuality education to support their quality of life, in terms of friendships, having a best friend, having a consensual romantic relationship, getting married, engaging in pre and post-marital consensual sex with a partner, with legal and capable of providing legal consent.
And then also supporting them in seeking out the supports they need to conceive, deliver and care for children, when that's the desire of the couple.
This doesn't mean that everybody can provide consent, or that everybody with autism should get married, and that everybody with autism is entitled to have children.
Different laws will have different implications for the provision of those types of supports.
But generally we should accept that there's a right to these sorts of things, and that certain conditions may limit some of these rights, like consensual sex with a partner.
Not all individuals with autism, particularly those who have severe intellectual disabilities, are capable of providing consent.
And you'll want to check with your law enforcement agency, or consult a legal representative to be informed about how to support individuals around making decisions about consensual sex, partnership, marriage, and so on.
I just want to highlight at the bottom here that I think a major difficulty is, teachers are employees of the government, and so their personal beliefs, whether they be religious or otherwise, should not interfere with the provision of sexuality education.
And so this doesn't mean that a person whose religious beliefs conflict with sexuality education topics, like teaching masturbation, should be required to teach it.
It simply means that we should not abstain from providing sexuality education, in areas that are inconvenient or conflict with the personal beliefs of the teacher, simply because the teacher does not believe in providing that sort of training.
Instead, we should look for alternatives, another other individual who's willing to provide it, to ensure that the person with autism has access to the instruction.
This, I think, is a big one, preventing inappropriate behavior.
The delivery of sexuality education, beginning in early childhood and through adulthood is important for preventing inappropriate behavior.
And oftentimes what happens is sexuality education becomes a topic, or becomes a concern for intervention and supports, when the person begins to engage in inappropriate sexual behavior, or in the case of a female, when she experiences her first menstrual period.
So I think that's our problem that there's sort of this waiting game, and maybe some hoping for an absence of inappropriate behavior.
But everybody masturbates, and kids with autism are going to become young adults with autism who masturbate, and may do so inappropriately, if they're not provided with appropriate, comprehensive sexuality education.
If you can teach skills early on, not necessarily masturbation, but relationships, social skills, things around identity, safety, reproductive health, and anatomy, then you'll be in much better shape when the time comes to teach things like how to ask a girl out on a date, or how to go out on a date, or how to deal with rejection, or how to engage in sexual behavior in a safe and socially appropriate way.
Those sorts of things will be easier to deal with if sexuality education is provided early on, and skills are acquired gradually over time.
The sudden emergence of problem behavior is almost always a rationale for intervening, but ideally what we should do is develop some systems of education that prevent challenging behavior from occurring in the first place.
An ounce of prevention, as they say.
And of course, to promote health and hygiene.
This is the most common reason why people provide sexuality education.
It's probably the easiest argument to make, in terms of getting sexuality education to individuals with autism.
If you're presenting a case to an administrator, or a teacher, or some other educators in your school, such as a physical education teacher, or a health teacher, or someone else who's typically responsible for providing that content in school.
People with autism are entitled to instruction to help them develop health, good reproductive and physical health, to maintain good hygiene, to prevent an unwanted pregnancy and disease, to eliminate or prevent discomfort associated with sexual development, such as cramping during the menstrual, pre-menstrual cycle and things like that.
So there's good reasons here that I think most folks will agree with for providing sexuality education to individuals with autism.
And if anything, I think you can make the argument using this rationale, to convince folks that you need to provide something.
I recently wrote a paper with some colleagues on the topic of self-determination, as it relates to sexuality education.
And if you're not familiar with self-determination, it's this philosophy that a person with a disability should be the primary causal agent in his or her life, to make choices and decisions about their quality of life, and be free from external influence or interference from other people.
So it's sort of empowerment, more than just self-advocacy, but teaching the person how to make decisions, how to advocate for their decisions, how to choose what sort of things they want in their life, and to avoid external controls, such as from an overbearing parent, or some other similar responsible agent in the person's life.
A support person in a group home, for example.
To be self-determined, the person with a disability needs to have the capacity, opportunity, and perceptions, and beliefs to make decisions about their life.
So capacity relates to their education and development.
This means they have the knowledge and the skills they need to make decisions.
Opportunity has to do with the environment, and whether or not this person has the opportunity to repeatedly engage in decision making behavior.
And with more opportunities, you get better fluency, and you get more complex sorts of decision-making skills.
And then the third piece has to do with the perceptions and beliefs of stakeholders and support individuals, and whether or not those individuals are acting in the best interest of the individual.
So supporting them and making good decisions, and supporting them when they make bad decisions, so they can encounter failure.
Everybody encounters failure, and preventing an individual from contacting a somewhat benign mistake is to withhold learning opportunities from that individual, and to act as an eternal parent.
And so self-determination is rooted on that these three corners, I guess you could say.
So if a person going to become self-determined, if they're going to be autonomous, and self-regulate, and be psychologically empowered, and pursue their own goals, then they need to know something about sexuality.
And so in our paper, we review the intervention research, and you'll find that in the Google Drive folder that I've shared with you.
But we contextualized the literature on sexuality education intervention research for people with autism and developmental disabilities, in general.
We contextualized it around self-determination, and so you can see how the self-determination skills, on the left-hand column, align with sexuality related skills in the right hand column.
So choice-making aligns with, for example, choosing a friend, or who your friends will be.
Decision making has to do maybe with something like asking a person on a date.
Problem solving relates to the individual's ability to maintain a relationship with an individual.
Goal setting, such as becoming a parent.
Self monitoring, such as when it's appropriate to masturbate.
Self advocacy, like saying no, or reporting abuse.
Resiliency, like dealing with rejection.
And so there are many examples of how a person needs sexuality related skills, in order to be self-determined, at least in the personal relationship and human development aspect of their life.
So in summary, sexuality education for people with autism is necessary for preventing and stopping sexual abuse and other crimes, maintaining sexual health and hygiene, preventing socially inappropriate behavior, supporting social relationships with other individuals of various kinds, and achieving greater self-determination.
And so, if you think about that rationale coupled with the fact that sexuality plays a fundamental role in all aspects of our life, then you have some pretty good ideas about why sexuality education is important.
So let's talk about what to teach.
First of all, what is sexuality education?
It's a difficult thing to, what is human sexuality?
That's a difficult thing to define, first of all.
And it has to do with sexual knowledge, beliefs, attitudes, and behavior, and these include things like thoughts, feelings, behaviors in relationships.
Roles, identity, personality, as well as anatomy, physiology, and biochemistry.
Now, when you think about more broadly what sexuality is, thoughts, feelings, behaviors, relationships, roles, identity, personality, those are things that tend to get forgotten, or are omitted from sexuality education, and there tends to be a very narrow focus on anatomy, physiology, and biochemistry.
Okay, but that is not the entirety of human sexuality, and that's not, we should limit our instruction just to those things.
In sexuality education, believe it or not, begins in early childhood and lasts throughout the lifespan, and so it's somewhat controversial to hear people say things like we're going to provide sex education to young children, and maybe that's not the best language to use.
But when we teach children head, shoulders, knees, and toes, when we're teaching them about the different names for their body parts, we are providing a component of sexuality education.
We're teaching about anatomy, and we're teaching individuals the names of the different parts of their body.
When we're teaching toileting skills, we are teaching sexuality education.
These are things that children learn from their parents but also from their schools.
They learn about relationships by observing adults and other children around them.
And this doesn't just happen in adolescents, these are things that are unfolding gradually and consistently throughout childhood, and into adolescence and adulthood.
The goals of sexuality education are to establish a repertoire behavior and a set of competencies that are consistent with sexually healthy adults.
So I'll talk a little bit about what some of those might be in just a moment.
I think it's important to emphasize that anytime you're going to provide specialized instruction of any kind, you start with the end in mind.
What's the goal?
What do we want to achieve for this individual?
What does this person need to know about sexuality to be a sexually healthy adult?
You may not have to teach everything, and you may not have to teach certain skills at certain periods.
What I'll share with you shortly is sort of a guide, but it's not written in stone when skills should be taught, what skills should be taught, and what level of mastery or understanding the person should have.
All of those are decisions to be made by the person's education and support team.
So start with these goals.
What does a person need to know to be a sexually healthy adult?
And what does a person have to be able to do, or how should they behave, in a way that's consistent with sexual health?
So when you start with that goal in mind, you can then reverse engineer your instructional programming.
It gives you ideas about how to plan for instruction, what resources will be necessary, who will provide the instruction.
It allows you to prioritize what topics, or what content, or what skills need to be taught first, and it allows you to organize and deliver instruction.
So I would say, please start with the goal and work backwards.
So what are some of those goals?
This is a figure from a book that I'm working on at the moment on sexuality education for learners with autism.
And this list is somewhat adapted from a guide that I'll share with you in a moment, and a copy of which is also in that folder I shared.
These are the sorts of behaviors and competencies of sexually healthy adults.
So when you look at things like respectfully and appropriately interact with others, regardless of their gender, okay?
So that's a concept or a skill that maybe an individual with autism, that you teach, or that you serve, may need to learn.
To develop and maintain personally meaningful relationships.
I would argue that every individual with autism, this concept applies, and they need skills that allow them to have personally meaningful relationships.
What types of relationships?
The quality, the quantity of those relationships will vary based on the individual, but this is a goal to work from.
This is a starting point.
The goal is to develop these things.
How do we get there?
Decision making skills.
Expressing sexuality in safe and enjoyable ways, and in accordance with their values.
What that looks like for every individual will need to be tailored based on the team, but every person with or without a disability is entitled to and should be expected to express their sexuality.
And what may be necessary for individuals with autism is explicit instruction in how to do that in safe and enjoyable ways, that are consistent with what they care about.
How to have conceptual, non exploitive, honest, safe, and pleasurable sexual relationships.
Again, not with autism will become adults who can provide consensual sex, but some individuals with autism clearly are legally and intellectually capable of providing consent.
But being able to provide consent does not necessarily mean that they'll be able to avoid non exploitative relationships, or have an honest and safe sexual experience with a partner, and so on.
Okay, so those are skills to work on, are examples of outcomes of good sexuality education.
So there's a document that was published by the Sexuality Information and Education Council of the United States, or what we call SIECUS, in 2004.
And this document is a guideline that includes key concepts, as well as topics and levels of instruction, based on age.
The key concepts to comprehensive sexuality education.
Now remember, this is different from sex education, which tends to focus on anatomy and reproduction.
This is comprehensive sexuality education.
There are six key concepts associated with sexuality and family living.
They are human development, or the interrelationship between physical, emotional, and intellectual growth.
Relationships, which play a critical role in all of our lives.
Personal skills, which allows us to, or encourages our interactions with other individuals, in ways that are mutually reinforcing or enjoyable.
Sexual behavior, which is part of the human experience, and can be expressed in a variety of ways, throughout the lifespan.
Sexual health, and society and culture.
So if I give you, this is a page or a cut out of a page in that SIECUS document that you'll find in the folder that I shared with you.
You can see that each of these key concepts appears here, and is associated with a number of topics.
So in terms of, let's go to key concept two, relationships.
You'll notice that there are six topics here that are associated with these guidelines, and they include families, friendship, love, romantic relationships and dating, marriage and lifetime commitments, and raising children.
Now within each of those are developmental messages that can be broken down, based on age level.
So I'll give just show you another example.
Sorry for the quality on this image.
But this relates to, let's see here, I'm trying to remember.
I think this relates to human development.
So topic four, yeah, so you'll notice for key concept one, human development, topic four, body image.
Topic four, body image.
The sub concept is that people's images of their bodies affect their feelings and behaviors.
And now for each of these levels, and there are four, sometimes only three, but level one would be early or elementary, so five to eight year old children, that you would teach them things like bodies are different in size, shape, and color.
Bodies are equally special, including those that are disabled.
Differences make us unique.
Good, healthy habits, such as eating well and exercising can improve the way you feel about your body.
Each person can be proud about their body.
Now this is sexuality education, and it may not sound like it, but that's what this is, and that's what I mean when I say if we can teach these sorts of things early on, well early on means teaching things, teaching individuals with autism about their bodies.
Level two has to do with students who are between the ages of 9 and 12, and you might teach them different things related to heredity, or how people in the media do not necessarily, are not necessarily accurate depictions of real people.
You can talk about Photoshopping and that sort of thing, and make up, and how standards of beauty change over time.
What was once considered attractive or fashionable is no longer considered fashionable or attractive.
That a person's values not based on their appearance, and those sorts of things.
These may seem like abstract concepts, but how you teach them, and the materials that you use to promote these ideas will vary based on the individual, and not every single skill will be applicable for every student.
So for body image, level three is for students who are in middle to early high school, and then level four would be young adulthood.
And so each of these levels is maybe applicable to a student, and it may be that you are teaching skills that are consistent with level one to a 12 year old.
It may be that you're teaching skills that are consistent with level three to a 14 year old, and those things are all fine.
This is not a prescriptive manual.
It is a guide to help you understand what sorts of concepts, what sorts of messages, what sort of topics need to be part of a comprehensive sexuality education program.
So I think I'll just jump out real quick.
I think you can still see my screen.
But this is the document that's in that folder that I shared with you, and you'll see that there's a nice introduction on what this, how this manual can be used.
It's not specific to people with disabilities, so you're going to have to adapt.
There's unfortunately not very much content out there about teaching people with autism about sexuality, especially when it comes to curriculum.
So this serves as a sort of curriculum guide to help you develop your own instructional methods and materials, to address the needs of individuals with autism.
This looks familiar.
I shared with you that image.
And then when you get into these key concepts, they talk about what the life behaviors are that are related.
It tells you the different levels that are associated with each of the topics.
It gives you each of the topics and related sub concepts, that can be taught, and then it's all broken down by each level.
And it does that for each of the topics.
Remember there are six key topics.
Six topics associated with the key concept of human development.
So you can go through this manual and identify various relevant concepts and skills that should be taught, and then use those to help develop perhaps IEP goals and objectives, as well as your related instruction.
So that's the SIECUS document, and I encourage you to review it.
It may seem rather long, but it is a very useful and easy sort of document to extract helpful information from.
Any questions about the SIECUS document, or anything else so far?
This is a table from one of the papers that I shared with you, but you can see how we have broken down, rather than four levels, we decided to break this down into three levels.
So we have the key concept, the topics.
We have elementary years, adolescent and young adulthood, and then throughout adulthood, what are the different skills and concepts to be addressed, across the lifespan, as they relate to human development.
So this is the SIECUS key concepts and topics, at a glance, with all of the different levels plugged in by age range, so a quick little cheat sheet.
I already explained all that.
If you notice in relationships, you'll see things like families, friendship, love, romantic relationships and dating, marriage, life commitments and raising children.
And for young children, in elementary school, you might teach the concept of family and different types of families.
You might teach.
But you'll notice that these different concepts are not necessarily ones that people with autism can't learn about.
Marriage and divorce, parenting, friends, what it means to be a friend, how to have a friend, how to be a good friend, that sort of thing.
All the way up to concepts of love, how love evolves and changes over time, when you're in a long-term relationship and things like that.
Hopefully you'll find this cheat sheet somewhat helpful in making quick decisions about the types of things that are maybe developmentally or age appropriate for an individual that you're serving.
When it comes to curriculum, I mentioned that there aren't many curricula out there for teachers to choose from.
This is a figure that we put together for a book chapter that's also in that Google Drive folder.
This one by Terry Couwenhoven, "Teaching Children with Down Syndrome About "Their Bodies, Boundaries and Sexuality", I really like this book and it's really affordable.
I think you can get it for like 15, $20.
And although it says down syndrome, it's not specific or exclusive to down syndrome.
It can be useful for anybody with a developmental disability.
And it has some nice explanations, some good materials, good lesson plans.
It's very affordable.
And she has, I think, four books, four sort of manuals now that are designed for providing sexuality education to people with developmental disabilities, and I highly recommend her stuff.
I just think it's really good stuff.
There are some other curriculum and resources out there.
I like these for a young adults down here, "Finger Tips: Teaching Women "with Disabilities About Masturbation".
It includes a video, so it's a video modeling instruction.
And then the male version of that is called "Handmade Love: Teaching About Male Masturbation", and it also includes video.
Understanding, of course, that this stuff will be somewhat explicit, and you may or may not be able to use that sort of material in school, but parents may find this information exceptionally helpful, and they may seek out these sorts of resources, to provide sex education, sexuality education to their children at home.
I wrote a chapter for this book on adolescents and adults with autism, which was edited by my friend Matt Tincani, and his colleague, Andy Bondy.
You might recognize Andy Bonnie's name from PECS.
He's the guy who was the co-creator of PECS.
And in this chapter, we talk about sexuality education, some similar content to what I've already presented, specifically for adults, and we include different suggestions and guidelines for teaching adults with autism about sexuality.
But we also developed this curriculum evaluation tool.
We adapted it from the SIECUS guidelines, with their permission.
You'll find a separate copy PDF version of the entire evaluation tool in that Google folder that I shared with you.
And what you can do is you might examine various curricula to make decisions about what is appropriate for teaching different things, or what's best, or what you would like to use.
So you can rate the curriculum on each of the key concepts, human development, relationships, personal skills, and so on.
And then within each of those key concepts, we have listed the topics.
So does this manual contain information about reproduction, sexual anatomy and physiology?
And you can score it zero, one, two or three.
And you do that for all of the key concepts, and then we also have a section that we developed on evaluating the content of that curriculum manual for accuracy.
So does the curriculum use scientifically and medically accurate information?
Does it include lessons that have graphics, line drawings, photographs, or video?
Does it include information that is appropriate and accurate for students of different ages?
And so you can also rate the content, based on none, minimal, some or thorough, using that same scale.
And then we also have some criteria for exclusion.
So reasons why you might not use a curriculum manual, and that might be things like using shame, guilt, or fear to prevent premarital sexual behavior, or portraying people who engage in premarital sexual behavior as being deviant, troubled or unworthy of respect.
Uses shame, guilt, or fear to suppress or prevent masturbation, those sorts of things.
Those and the other items that we included in that section may be reasons to exclude or not use the manual, when providing sexuality education to individuals with autism.
Again, there's a PDF of that for you in the Google folder.
Once you complete the rating, you can total the number for each category and calculate a percentage of points that were awarded.
So you can kind of compare across curricula to see maybe one curriculum manual is particularly strong in the human development area, but a different manual that you found deals much better with regard to relationships, than it does with human development.
Then you might decide, okay, I'm going to use this curriculum, when I'm teaching human development, and then when we get into relationships, I'm going to start using this other curriculum, because it does a better job of addressing the different concepts that I'm concerned with teaching.
I'll point you to this resource, although I think it's a bit, it may be a bit outdated.
I tried using it again recently, just to see what sort of information was out there, but they have many lesson plans on this website.
It's the Sex Ed Library, so if you just Google that, Sex Ed Library, you might have to include United States.
But it's part of the SIECUS, the Sexuality Information and Education Council of the United States.
So you'll find it on their website, or at least links to it on their website.
And when you click on that, you'll find that there are lessons organized by the SIECUS key concepts and topics.
So you would click on this link, and then you would see all of the available lesson plans that relate to reproduction and sexual anatomy.
Now keep in mind that the lesson plans that are there are going to be the sorts of lesson plans that are developed for general education students, and not students with disabilities or students with autism.
So there likely will be a significant need for you to adapt or modify any lesson plans that you find on this website.
And not every single, although the links, there appear to be, everything appears to have a hyperlink associated with it.
Not every single one of these hyperlinks has lesson plans embedded in it.
There's a lot of broken links.
Maybe they don't have enough funding to keep up with it, but some of their external links to other websites return error messages, pages that no longer exist, and so on.
But I still wanted to share it with you, because I think there is some good information on this website, and I'm not sure what resources you have available to you.
Sometimes in the US, teachers have to, they're expected to align the curriculum of the individuals, of the learner's individualized education program with state academic or content standards.
But not every state has sexuality specific content standards, and so it can be challenging for teachers to either comply with alignment between IEP goals and objectives, and state content standards, or provincial content standards, if you have those.
And so what I generally suggest is that teachers look for alternative ways to make the connections.
So they might look at their state standards on health education, and look for things specific to fitness, diet and reproduction, in order to make the connections between the IEP goals and objectives that they're including for a particular learner, and the state standards that they have to align with.
You might also look at the physical education standards for things like body, fitness and cooperation.
You might look at the social study standards for content on citizenship, and social responsibility, and culture, and families, and those may be good ways for you to make connections.
Science education standards also sometimes can be a good resource.
So you may have to be creative to comply with the requirements that you align IEP goals and objectives with state standards.
On the flip side, sometimes I will advise teachers, who are encountering difficulty in getting support in their school, for the provision of sexuality education to their students who very clearly need it, to write these goals and objectives and relate them to the standards, in order to articulate the need, or to justify the provision of sexuality education.
Of course, you've got to have parental support, and you've got to have enough involvement and investment from other stakeholders to make that happen, but if you're encountering resistance, sometimes aligning the IEP goals and objectives with state standards can help justify your provision of specialized instruction.
I won't spend too much time on the next few slides.
These are just examples of how health standards might be useful for providing sexuality education to individuals with autism.
So here in the health standards for the State of Texas, which is one of, you must know, one of the most conservative states in the United States.
It has very clear and conservative rules around sexuality education in public schools, but teachers can align their instruction with the health education standards, to help ensure that their students have access to sexuality education.
So if you look at "The student differentiates "between positive and negative family influences", we can tie that back to some of those SIECUS standards, and make IEP goals and objectives that relate to this standard, and therefore justify, or defend, or provide a rationale for sexuality education.
In Arizona, we have PE standards.
"Student works in a diverse group setting "without interfering with others.
"Accepts all classmates, without regard "to personal differences.
"Demonstrates the elements of socially acceptable "conflict resolution during class activity." Shows compassion, takes turns.
Arizona is also a very conservative state, and I chose conservative states intentionally, because that's where a lot of teachers have difficulty.
You'll have less trouble providing sex education in a progressive state like Massachusetts, where I lived for some time, than you might in my home state of Nevada, where you might have to use the Social Studies Standards to help justify or provide a rationale for sexuality education.
Biology, you might use the science standards.
Another very conservative state.
Okay, so there definitely are ways to provide sexuality education that aligns with state standards.
You may have to get a little creative.
You may have to go digging a little bit, but once that work is done, you can recycle some of those for future students, who need to learn similar skills.
I did find this for Ontario.
They have a pretty comprehensive sex education guide in Ontario.
From what I understand, this was sort of a source of a lot of controversy.
It's not surprising to me.
As I mentioned before, sexuality education, in general, tends to be very controversial.
And there are a lot of religious and cultural beliefs around sexuality that are sometimes in conflict with what we know about scientific perspective of sexual development, human development, and that sort of thing.
So I would encourage you to check out this website, because it's from a Canadian province, and it may provide some guidance on the sorts of sexuality education that you can provide your students in your schools.
But they use some of this language like key concepts, same language as SIECUS.
And then within that, they have these different areas, healthy eating, personal safety and injury prevention, substance use, addiction and behavior, and human development and sexual health, or traditional sex education.
And they have it all broken down by grades.
So for grade four, students will learn the physical changes that happen during puberty, and the emotional and social impact of these changes on the developing child.
So there's plenty of resources, I think, out there for you to help put together some curriculum, evaluate existing curriculum, design specialized instruction, develop IEP goals and objectives, align them with state standards, and differentiate by age level or grade level, in accordance with your students' needs.
Let's see here.
How are we doing on time?
One o'clock, okay.
I think we're in good shape here.
So interventions, the part everybody's been sitting on their hands and waiting for, right?
Like when are we gonna get to the good stuff?
The first thing to say is we don't have a lot of intervention research studies on sexuality related education.
It's really unfortunate.
I think there are a number of reasons why that happens.
Most of that has to do with the protections in place for people with disabilities who participate in research, and then also just ethical issues around sexuality, and what you can and cannot teach, and how certain skills that become the focus, or should be the focus of intervention research are not really accessible to researchers.
So teaching appropriate masturbation, for example, it's just, it's not gonna happen for a researcher to get approval, from a research review board, to provide instruction around appropriate masturbation.
Maybe in partnership with a parent, but we have data collection issues.
The extent to which you want to be ethical and provide a dignified intervention program, for an individual, undermines your ability to adhere to really high experimental and methodological standards.
And so that's sort of the struggle with intervention research, and I think that's partly why we don't have a lot of intervention research to guide instruction in this area.
However, I think if you rely on the SIECUS guidelines, and or other curricula that you have available, as appropriate, and you use that knowledge about what to teach, in conjunction with evidence-based interventions and practices for learners with autism, along with your professional judgment, I think you can do some really effective things.
So the first thing I want to just talk about is what is evidence-based interventions, or evidence-based practice.
If you think about an evidence-based practice as a noun, we're talking about a specific intervention with a set of procedures that need to be followed, in order for that intervention to be effective.
In the US, at the Frank Porter Graham Institute, at the University of North Carolina, Connie Wong, and Sam Odom, and other high status leaders in special education, conducted a comprehensive literature review of all intervention research for children with autism, that was published between 1990 and 2011.
They found 29,000, roughly, articles, and they went through a process of evaluation and exclusion, until they ended up with approximately 1000 intervention research studies, after which they examined for methodological rigor.
So they looked at the experimental quality of those 1000 studies, and the studies that had the highest methodological quality were retained, and that led to 456 articles of very high experimental rigor.
Now just think about from 29,000 to 456, that's a demonstration of how hard it is to do good science.
But also that we really only have, at least at the time, up to 2011, we really only have 450, some odd, very high quality intervention research studies to inform our practice.
But these are reliable, it's the best evidence that we have, okay.
And out of those 456 articles, they identified, by sorting the intervention that was used, 27 practices that met their minimum standards to be qualified as an evidence-based practice.
So there had to be a number of studies of high methodological rigor, for a particular intervention, in order for it to be labeled an evidence-based practice.
Now, you can go to this website, and each one of these has a hyperlink.
The dark blue hyperlink takes you to a training module, that is freely accessible.
All we have to do is create a free login account.
You can access all of these modules.
Each one of these will have a training module associated with them, when the project is complete.
The dark blue ones are already completed.
So you can go in now and do the module on social narratives, task analysis, visual supports.
There's only a practice guide, not a training module, but a practice guide, for response interruption and redirection.
But these practices are sufficiently supported by evidence.
They should be your go to interventions, when providing support and instruction to individuals with autism.
Each one of these is accompanied by a step-by-step guide, that explains to you each of the procedures that are necessary to use that intervention.
It's very prescriptive.
It's very helpful.
I use it in all the courses that we teach on autism at KU, and I can't praise it enough.
I think the one thing that I think teachers of students with autism have been searching for, and it was a very valuable resource.
So I'm going to talk about, I'm going to provide some examples for interventions.
Although some of these interventions have a very narrow focus, that probably will have little potential for addressing the sexuality related needs of your learners, like PECS, for example.
You're not going to, there's not much that you're going to be able to use PECS to to teach about sexuality.
But others have a very general utility that can be useful for teaching a variety of sexuality related skills and behaviors, for example, social narratives.
That may be useful for teaching high functioning adults, or high functioning individuals with autism, about various aspects of socio-sexuality, including grooming, hygiene, asking a girl out on a date, dealing with rejection, appropriate masturbation, and so on.
Task analysis can be used to teach an array of complex skills, like changing a sanitary pad for menstrual care, or cleaning up after masturbating in your bedroom, or playing a game with a friend, or using a decision-making skill to independently solve a problem.
Those are examples of how task analysis might be used for sexuality related skills.
Visual supports can be used to develop schedules that the individual can follow, including bedtime routines, morning routines, bathroom routines, private and alone time, communication to communicate different abstract concepts that may be difficult to understand in more concrete ways.
Visual supports are ubiquitous, and can be used for a variety of different skills.
Response interruption and redirection is particularly useful for addressing inappropriate touching and masturbation, and I know people are just, they're very interested in learning about that.
Tammy asks, "What's the name of the website?" The website is, it's a very long name.
National Professional Development Center on ASD, but if you Google NPDC ASD, you'll find it.
There, Shelly posted the link, thank you.
Very useful website, and they're still developing all of their modules, but once they get there, the FBA module is really great, and it's about two hours of your time, and you can accrue CEUs and track everything.
It's really fantastic.
Thank you for asking about that.
All right, so let me share some, oh, there's my animation.
Let me share some of these examples.
So for like social narratives, it's important that you understand that this may be more effective for individuals who understand language, than individuals who do not.
No, so while these, the modules that don't have a link, the question is, "Are there modules "on topics that are not highlighted, "like cognitive behavioral intervention "and scripting, structured playgroups?" Those are in progress.
So there will be modules in the future.
Their goal right now is to get modules created for all of all of the ones that already have the practice guides, and then they'll develop the practice guides, and modules for these other interventions.
Yes, there are modules on response.
There's no module on response interruption and redirection, but there is a practice guide, so that practice guide will tell you what the intervention is.
It will tell you all of the procedures for using that intervention.
It will give you citations to articles, experimental studies that were included to justify its qualification, as an evidence-based practice.
So the light blue or the non bolded blue links, those are links to a practice guide, and the dark blue links will take you to, they have the full module.
My understanding is that, I talked to Dr. Odom about three months ago, and he said their goal is to get all of the modules done by the end of summer, so hopefully very soon.
Social narratives, I think they're sometimes misused or overused, but I think there are particularly effective for individuals who understand language.
They can be combined with visual supports to improve comprehension.
There are many variations of social narratives, so I encourage you to look at the practice guide, and the module, provided by the NPDC, so that you can adhere to the proper procedure, and deliver that intervention in a way that's consistent with previous studies.
So here's an example of a social narrative, and I can't get this thing to just go away, but it says something here about "My body is changing and I am growing up.
"Part of growing older is having my body change.
"I get taller and I weigh more.
"Another change is that hair is growing "on my body in new places.
"There's hair on my face.
"There is hair under my arms.
"There is hair on my private parts.
"Every adult has hair in these places.
"It might feel weird to have hair growing, "but I should let the hair grow under my arms." Okay, that's just an example of a social story you might use.
Here's one that incorporates some Mayer-Johnson symbols on menstruation, and explains maturation, and what happens, blood comes from my vagina.
This is so that a grown woman can have a baby, if she wants.
How long it will last, what I need to do, and so on, right?
This is another variation that you might use to help a person understand the concept of kissing.
Kissing is a form of touching.
I can kiss my mom.
I can kiss my dad.
There's no kissing at school.
I can't kiss my teachers.
I don't kiss my friends.
I don't kiss girls.
So this is to avoid getting in trouble.
It's to avoid making people upset with me.
It's to maintain respect and personal space.
So these quick and easy little explanations with visual supports, to help the person understand what they're supposed to do and not do, as well as why that's important.
This is a social narrative about masturbation.
So this might be useful.
This comes from a Wrobel manual or curriculum manual.
It's okay to touch your body.
It's not okay to touch your body when other people are watching.
It's okay to touch your private areas when you're alone in your bedroom, or in your bathroom with the door shut.
So there's all these sort of details about when it's okay and not okay.
I do want to caution about masturbation in particular, in terms of teaching the person that the bathroom is a place where that's okay.
It may be that it's okay for the person to do that in their bathroom at home, but it may present a problem if that's the place where masturbation is typically expected to occur or allowed, and that's because there are bathrooms everywhere.
There are bathrooms at school, there are bathrooms in the community, and the person may not understand that just because you're in a bathroom, doesn't mean that you can touch yourself or masturbate.
And so for that reason, I generally recommend that individuals focus on teaching the person that there is one place, their bedroom, where it's okay to masturbate, and teach them the steps for doing that.
Lock your door, cleaning up when you're finished, putting your clothes back on, that sort of thing.
So that's social narratives.
Task analysis, breaking down complex target skills, or behaviors, into smaller steps.
So this involves team members systematically teaching the individual steps of a complex chain of behaviors, and they usually do this using one of two ways.
They either use forward chaining, in which the first step is taught, until the person masters the first step in the chain, and then the support person prompts or does the other steps for the individual.
So the person does step one, and then I do steps two through ten, and then once they master step one, independently, then I teach them to do step two, while I do steps three through ten.
And then once two is mastered, then I teach them to do step three, while I do or prompt them to do steps four through ten, and so on.
Reverse chaining or backward chaining is just the opposite, where you teach the last step to independence.
So I do, or I prompt you to do steps one through nine, until you can do the 10th step appropriately on your own, and then once you master step 10, then I require you to perform step nine, until you master that on your own, while I'll do steps one through eight.
And then we gradually increased the expectation, until the person is able to do all of the steps in the chain on their own.
So here's an example of a task analysis I put together with a colleague, for that chapter on adults with autism, on changing a sanitary pad.
So we have 18 steps associated with that, starting from, first thing you have to get a clean or new pad, put it in your pocket or your purse, go to the bathroom, go into the stall, shut the door, pants down, check your pad, if it's red or brown, take the pad off, roll it up and wrap it in toilet paper, put it in the trash can, not the toilet, take the new pad out, and so on, and so on, and so on.
So if you were to forward chain this, then you might teach the person just to do step one, until that was mastered, and then you would prompt them all the way through step 18.
So there's no expectations that they'll perform these skills independently.
They'll be performed in conjunction with, or with support from a teacher.
A female teacher should be doing this.
And then once step one is mastered, then I require step two.
Now, because you don't get a lot of opportunities to practice this, you may need to artificially practice this routine.
And you can do that by using different strategies, so the person has to go and check their pad, change their pad, even if it's clean or whatever, and give them more opportunities to practice these steps, until it's mastered.
Because if you only get one or two opportunities a day for maybe three or four days, that may not be sufficient opportunities to practice this skill, in order to master it.
Task analysis for masturbation.
This is another one I just put together last night, actually.
The steps involved, going to your bedroom, locking the door, getting your adult toy, or your special toy, or your private toy, or whatever label you want to use.
A towel and et cetera, whatever other sort of materials would be necessary to clean up, or lubrication or whatever.
Take off clothes, lay on bed, use the toy to masturbate, clean up any semen or discharge with the towel, put clothes on, put toy away, put towel in laundry basket, unlock lock the door.
And you could pair this with visual support, so the person understands what the steps are.
You probably will not be able to teach this skill, obviously, because it should be happening at home.
And so you would probably need to work with the parent to help them teach this skill, and I'll talk a little bit about that, in a few minutes, just dealing with decision making and responsibilities.
Another task analysis, just for shower routine, has to do with hygiene, obviously.
Having these materials together and prepared, and provide them to the parents, along with a description of the procedures on how to use them, can be very helpful for improving these sorts of responses.
Just because things don't happen at school, doesn't mean that the student doesn't need to learn them, and it doesn't mean that you don't need to support the parents in teaching them.
It's why a team approach is important.
We have many skills that can't be taught at school, and many skills that can be taught at school, and they're all of a value to stakeholders and the individual, right.
Now, some of these task analysis have visual supports, and visual supports is an excellent intervention.
It's usually combined with other interventions, to help students understand various concepts and expectations.
The reason why they're effective is because they take abstract concepts, including language, which is temporal.
As soon as I stop speaking, there's no more instruction.
Visual supports provide a concrete and more permanent way to communicate information about an activity, or routine, or an expectation, so that the person can perform a skill.
It's used to provide assistance across individuals and settings, and can be photographs, icons, line drawings, excuse me, written words.
Written words alone are a form of visual support.
Environmental arrangement, so you can have specific barriers that help clarify what the expectations are for different parts of the classroom, or school, or community.
You can create schedules using visual supports.
You can use graphic organizers and scripts.
So here's a visual support to help a student understand different concepts of play and friendship.
Okay, so you see some friends playing and you want to join in, okay, so what do you do?
You say, "Can I play?" And if they say yes, and you don't know how to play, you need to ask, "How do I play this game?" What do you do if a person says no?
Then maybe you can say, "How about the next game?" Maybe I can play with you then, because not all games will allow somebody to just jump in, right in the middle.
These visual supports help the person understand some more abstract concepts, such as observing, asking, and waiting for a turn.
And part of why visual supports are so helpful is because when I stop talking, there's no more information being communicated.
And teachers are really good at communicating information with language, but individuals with autism are not very good at understanding or remembering language.
So visual supports are believed to be helpful, because they're a permanent way to represent spoken language, and they also help the person understand the concept, as it relates to this an abstract thing that we call language.
Another visual support.
So this is a concept map, or visual support to help the person understand what it means to have a girlfriend.
A girlfriend is someone who is attractive to me, who's nice to me, someone I care about and cares about me.
Someone I spend time with.
Someone who has common interests, and shares the same values as me.
Oftentimes adolescents with autism, including high functioning individuals, or people with Asperger's syndrome, talk about wanting to have a partner or a girlfriend, but don't fully understand what it means to have a girlfriend.
They don't understand what a girlfriend would do, or how do you pick a girlfriend, or how do you pick somebody who could be a girlfriend.
What does a good girlfriend look like, and how do you know that this person feels the same way about you, that you feel about them, and so on.
And so these sorts of visual representations of an abstract concept, like having a girlfriend, can help them understand what it means to not just identify a person who might have a healthy relationship with, but also helps them understand who would be the types of people to avoid.
Maybe somebody's attractive, but we don't share the same values, we don't have any common interests, and she's not very nice to me.
Well, that means four of these concepts are missing.
That person's probably not a good candidate for you to be a girlfriend.
You probably wouldn't expect to go out on dates with her, and even if you tried, it probably wouldn't work out.
And so that can help the person understand some concepts.
What does romantic mean?
What's a romantic feeling like?
Romance means the person makes you feel happy.
You enjoy being around them, and you feel excited when you think about them.
You like to do the same things together, and you think the person is pretty, or handsome, or attractive.
You think the person is nice and friendly, and you may have sexual feelings or fantasies about the person, and that's what it means to have romantic feelings.
It's a pretty abstract concept, but breaking it down in this way, using these visual supports may help the person to understand this abstract concept called romance.
And now I'll just talk about response, interruption and redirection.
As I mentioned before, this may be especially useful as part of an intervention to address inappropriate masturbation.
It involves the delivery of a prompt, comment or other distractor, when an interfering behavior is occurring.
So if a person is touching themselves, they've got their hands in their pants, or whatever, then you would deliver some prompts to have them do something else, that required their hands.
So to go pick up something, or to hold something, or oftentimes give them an iPad, or something like that.
So the interruption is intended to divert the attention away from the interfering behavior.
It's a particularly useful strategy for self stimulatory behavior.
So things like hand flapping, body rocking and so on, response interruption and redirection is an evidence-based practice for addressing those sorts of behaviors.
And masturbation is one form of self stimulatory behavior.
However, I want to caution about this strategy, because self stimulatory behavior can take on other functions.
And so in the presence of a demand, the person might appear to engage in something like hand flapping, as a means of escaping the demand, and not necessarily getting access to sensory stimulation, through the stereotypical behavior.
This can be true of masturbation, or behavior that appears to be masturbatory in nature.
So a person may quickly learn that when they put their hands in their pants, everybody comes running over and get lots of attention.
Okay, so this can inadvertently reinforce some of this behavior.
And maybe in other circumstances, the person puts their hands in their pants, and peers run away, or person takes off their clothes, and peers get away from them, so this behavior becomes negatively reinforced through escape from attention.
And again, it could be also that the person learns that by putting their hands in their pants, people give them really cool things like hey, play with this iPad, right?
Like you would with response interruption redirection.
So the purpose or the caution that I want to communicate here is, you may inadvertently reinforce what appears to be self stimulatory behavior.
Masturbation and other stereotypy can take on other functions, and your response to it may inadvertently strengthen that sort of behavior.
So even though it appears to be self stimulatory, masturbation seems obviously self stimulatory in nature.
I have seen many cases where the person is engaging in inappropriate behavior, like self touching, or putting their hands in their pants, or exposing themselves, which is consistently followed by various consequences that appear to be maintaining the behavior, and not self stimulation.
So be very careful about that, when it comes to using this strategy, and when addressing inappropriate behavior, in general.
We can ignore self stimulation.
We don't have a problem with that, in many circumstances.
If the person is hand flapping or body rocking, and so we're able to withhold attention, or manipulate the contingencies, to determine what might be the function of the behavior.
And if it just continues to happen in the absence of a demand, or attention, or tangible, then we conclude through deduction that the behavior is maintained by self stimulation.
But we can't just presume that stereotypy is always self stimulatory in nature.
The way a behavior looks doesn't always tell you, reliably, what its purpose is, and so that's really what I'm trying to hammer home here.
But you can use this strategy, in a way, and I want to encourage people to not just try to suppress inappropriate behavior, like masturbation.
I mean that's what everyone's like oh my God, he's masturbating, we can't have that in school.
It's really stigmatizing.
It's really dangerous.
He's not gonna have friends.
This is like really bad, we have to fix this.
And so everybody, all hands are on deck, and everybody starts trying to suppress inappropriate masturbation, get them engaged, give them lots of things to do, distract him, minimize attention.
You're trying to do all these things.
All the while, there's no opportunity for the person to engage in masturbation appropriately.
So you can respond to behavior in ways that using consequences that influence future behavior, but doing so doesn't supplant the need to engage in that sort of behavior.
The person's going to have the urge to masturbate, and if that urge is never met, because you're constantly redirecting or providing some other tasks.
You can do that all day, but it doesn't mean that the urge to masturbate goes away.
And so one of the first things I try to encourage people to do is to provide an appropriate place and time for masturbation.
And you may have to try to do some convincing of parents.
This is normal.
Everybody does this.
Masturbation starts oftentimes in infancy.
Infants explore their genitals.
It's very, very normal, and common, and typical sorts of behavior.
And it's associated not just with pleasure, but a reduction in anxiety, enhancement of self perceptions, and feelings of safety.
So there are lots of positive side effects related to appropriate masturbation, and so that should become a main focus when inappropriate masturbation is occurring.
You should always avoid shaming and condemnation of the behavior.
Think about, there's no such thing as negative attention.
Attention is attention.
If it's shaming or praise, it can still have the same effect on future occurrences of behavior, but it's also inappropriate to shame somebody for engaging in a behavior that they have limited control over, and is a completely normal or typical behavior.
Most individuals with autism will learn to masturbate on their own, through just incidental contact with their genitals, but they may not be able to achieve climax, and this can cause problem behavior, such as persistent masturbation, or dangerous masturbation, that results, increases the potential for physical harm, or results in physical harm.
It's important to remember that masturbation may be the only sexual behavior that an individual with autism may experience in their lifetime.
And so again, another reason why it's important to focus on teaching appropriate masturbation, rather than just focusing on suppressing inappropriate masturbation.
Doing this, of course, requires team members to collaborate, to work together, to support each other, to help the person learn to use at home only, in their bedroom, masturbation to achieve climax.
So the goal is to teach where and when masturbation is okay and not okay, and you can use visual supports, and schedule private time to support masturbation.
A person learns, you can teach the person that when private time happens, no one's going to bother you.
You can masturbate for as long as you want.
You're going to have assistive technology to help you have a good time, but it's only gonna happen in this time of day, or at this particular location.
And maybe you have to schedule multiple times per day.
It depends on the individual's needs.
But what you want them to understand is it's much more satisfying if I do this when I'm at home in my bedroom, than when I'm in the car, or at the grocery store, or at school, or whatever.
So if you can help make that association between, oh, I'd rather do this at home because it's much more gratifying than doing it right now in public, then you would probably get some improvements and appropriate masturbation, and reductions in inappropriate masturbation.
I think it's important to provide assistive technology.
There's somewhat benign tools like vibrating wands and massagers that can be very helpful, or useful to achieving climax.
Lubrication and sex toys for individuals who are 18 or older, or whatever is considered legal, where you live.
I think it's important to provide those, because achieving climax can oftentimes be difficult, and as I mentioned before, masturbation in the absence of orgasm can oftentimes exacerbate problem behavior, and make inappropriate masturbation more likely, and also dangerous harmful behavior more likely.
So I'm gonna try to quickly run through this, consider these last few slides on IEP team considerations, so that you'll all have some time to ask me questions.
My paper on this topic is also available in that Google Drive folder, so I won't linger too long on this.
IEP teams need to decide what should be taught, and who will teach it.
And if you're going to bring this up at an IEP meeting, you'll probably want to provide some advanced notice that the topic is going to come up, so that parents don't feel surprised when it arises.
It also provides them with an opportunity to respond, in a way that lets you know how they feel about it.
If they're going to be very resistant, or feel very embarrassed or awkward, then it may be that you talk about it in a smaller group, or individually, in a way that minimizes that embarrassment.
You might include the person with autism in the IEP meeting, to talk about how they'll participate in their sexuality education, to teach them self-advocacy and self-determination skills.
Who's going to provide the opportunities?
What will the parents do?
What will the student do?
What will the teachers do?
How can we align instruction with the cultural beliefs of the family and the student?
And how are my biases influencing that decision?
Traditionally, teachers, or traditionally parents have been the primary providers of sexuality education, even though parents often report that they'd prefer schools do it.
Parents do this through modeling relationships.
They teach their moral values to their children, in this way.
They also teach what it means to be safe, and what it means to treat other people, of the opposite sex, in a respectful way, and so on.
And despite the advantages of them having early and repetitive opportunities to model these sorts of behaviors, parents oftentimes view sexuality as a burden, and something that they don't want to address, or that they feel incompetent to sufficiently address.
So this may result in school people being the primary providers of sexuality education.
So if you're going to be doing this, you should think about how your own beliefs and values impact your teaching of this content.
You should feel confident and at ease, and if you don't feel confident, or if you feel unsure about what you're teaching, then you should seek support, or consider having another person provide instruction.
You should feel open about concepts and direct about topics.
You should understand what the current information is, and maintain open communication with all stakeholders.
You should also know what your limitations are, and when you need to ask for expert advice, and work on different ways to promote generalization of the skills that you've taught in this specialized way.
It's also important that you have multi-sensory tools that help the person understand the concepts.
Videos, pictures, models, charts, anatomically correct dolls, and so on.
These are the sorts of things that we already know are very effective for special education, in general.
A collaborative effort is ideal, and if everybody's working together, you're very likely to get better outcomes.
But not everybody will always get along.
Sometimes there will be discrepancies between what the parents think the school should teach, and what the school thinks the parents should teach.
There also be discrepancies between what the student appears to need, and what the law requires or allows.
So you may need to consult with administration, and get some guidance on what's appropriate, inappropriate, legal, and illegal, in terms of sexuality education.
Ultimately, what your concern is, is whether or not you can improve the learner's quality of life, as it relates to relationships, health, safety, behavior, and community participation.
When there's disagreement, and there's going to be, I mean, sexuality is a sensitive topic, and disagreement should be expected.
But in many cases, you'll have to defer to the parent's preferences.
Their preference may supersede the rest of the team's, in many circumstances.
And that's just because sexuality tends to be very culturally grounded, and you may have religious beliefs of the family that conflict with the sorts of things that I'm telling you today, like teaching appropriate masturbation.
It's not likely that you're going to encounter a Catholic family, or a Muslim family who will find it immediately agreeable that they teach their child to masturbate at home, in their bedroom, with equipment, in order to reduce inappropriate masturbation in the community.
So instead of focusing on areas of disagreement, try to reach consensus by talking about specific interventions.
Try to build and maintain trust.
Start small, start on things that are socially valid or important to the parents, but on which everybody agrees.
And then once trust is built, and they see progress, they may be more inclined to acquiesce to instruction in other areas, that they might initially be hesitant to support.
So in conclusion, children and adults with autism are sexual human beings.
Comprehensive sexuality education is aligned with values associated with self-determination.
It is important for attaining desired outcomes, while also supporting a sense of wellbeing and safety.
There are curricula available, but they vary in quality, and no research has really validated any of those curricula.
A collaborative approach is ideal, and you should anticipate disagreement, and try to find ways to resolve disagreement, so that sexuality education can be provided in some way, shape or form.
And encourage folks to participate in research studies focused on this topic area, okay.
Here's a list of references.