This tool kit from ATN/AIR-P provides information on body changes; self-care and hygiene; public vs. private rules; staying safe: strangers, secrets and touch; elopement; safety planning for increased aggression; and Internet safety.
Some of my favorite features:
- Link to underwear designed to keep menstrual pads in place (I had no idea this existed!)
- They have parent stories throughout.
- They have suggestions for how occupational therapy can provide support.
This publication was developed and written by Vanderbilt Leadership Education in Neurodevelopmental Disabilities (LEND). There is a boy version and girl version. Each version has a booklet for parents or teachers and supplemental materials which include storyboards and visuals that you can use in implementing the methods outlined in the toolkit. It is free and there is a Spanish version!
Here is the website: http://kc.vanderbilt.edu/healthybodies/index.html
Over the summer, I did a 8 week sexuality class with middle school students with autism (3 boys and 3 girls). I’ve posted each lesson from the curriculum, but I thought I’d link all the posts together so you could get to them in one place. For each session there is a lesson plan, parent letter, and power point slides. Some lessons also have worksheets. I’ve also commented about how the lessons went and some ideas for adaptation. Click on the links below to go to the posts and access the materials.
*We sent home a workbook with follow up/supplemental material during this lesson. The workbook is available on the post.
Here are videos that were developed for 10 – 17 year olds on the autism spectrum regarding puberty & other sexuality topics. They are clear, concrete, and move through the material slowly (this is one of the biggest problems with videos for a general audience- they go too fast!)
My favorite thing about the videos is that the male instructor is an individual with autism.
All of the videos can be found on www.coultervideo.com, a website that sells videos by Dan & Julie Coulter. Dan & Julie are parents of a son with ASD who started creating educational videos on their vacation and now do it full time.
Videos that may be useful:
I have to say, the puberty session went great! It was just at the right level. Here are the activities we did…
Defining Puberty: This was the language we used to define puberty: puberty is your body changing from a child’s body to an adult’s body. It causes changes to your body inside and outside. Everyone goes through puberty but it might happen at different times and people’s bodies change to look different. Puberty is a time when you start to get sexual feelings. You don’t have control over going through puberty, but you do have control over how you react to it. It’s normal to have mixed feelings, some good feelings and some negative feelings. This definition highlights several key features of puberty (it’s in some ways different and some ways the same for everyone, it’s a natural biological process, it can be an adjustment).
They Tell Me I’m Going Through Puberty: This is a story told from the point of view of a teenager about the changes that are happening during puberty. This exercise helps students to understand that many of the changes that are happening in puberty happen to both boys and girls. The narrative format may help students relate to the changes that are occurring.
Boys/Girls/Both: In this activity, participants were given a series of cards each with a change that happens during puberty. They decide if these changes happen to boys, girls, or both. Again, this exercise helps students to understand that many of the changes that are happening in puberty happen to both boys and girls. Many of these changes are repeated from the first exercise although more are introduced. Each card separates out each change as concrete steps.
Puberty Worksheet: This worksheet is a check in on the changes participants have experienced, how they feel about these changes, and changes they anticipate. The worksheet was designed to help students anticipate some of the changes that will happen during puberty and help them to be aware of the changes that are happening in their own body. We use both open ended and multiple choice questions to stimulate different levels of thinking.
Diversity:We showed power point slides with pictures of several people showing a diversity of bodies and ages. Students were asked, “Which ones are going through puberty?”. This activity reinforces the concept that puberty is in some ways different and some ways the same for everyone. One thing that became evident was that the students had difficulty understanding that children hadn’t gone through puberty but the were quick to grasp onto the idea that adults are finished going through puberty. We used a few favorite characters to help the kids get a little excited about the topic.
Click on the Links Below to AccessMaterials
Hygiene is not on the SEICUS guidelines for what to teach in a human sexuality class, but we find that it can be a hard topic for students. It also is strongly connected to puberty because it is during puberty that hygiene needs change at the same time young people have more autonomy and responsibility for their hygiene. We tackled hygiene with a series of activities we called hygiene Olympics. In small groups, students moved throughout the stations to practice and contemplate hygiene tasks.
- Hand washing: Students rubbed glitter mixed with lotion on their hands and then had to wash their hands until the glitter came off. This will helped students to recognize that hand washing is more than just rinsing hands lightly with water.
- Body washing: We will had life-size body outlines, loofas, and paint. Students used the paint like it was soap. This helped students recognize the importance of washing their entire body.
- Laundry: Students saw a pile of laundry. They then sorted the clean from the dirty clothing (the dirty clothing are just tee shirts that have been dampened and wrinkled). The helped students identify clean clothing.
- Shaving: Students used an orange to practice shaving with a razor and shaving cream. The teacher in the group explained that boys often shave their face and that girls often shave their legs and underarms. Students had an opportunity to practice shaving.
- Deodorant testing: We had several deodorants with the brands blocked out. Students smelled and voted on their favorite scent. At this station, teachers pointed out the importance of wearing deodorant each day and reapplying after activities that cause sweat. This station emphasized the importance of deodorant use.
- My Hygiene Routine: Students saw pictures of different hygiene tasks. They also had a worksheet that said “My Hygiene Routine.” Students chose what order they would prefer to complete the hygiene tasks. This activity provided students with control and choice while also committing them to completing the necessary tasks.
Materials for this week
I came across this looking for educational resources for teaching about puberty. It is not specifically designed for students with intellectual and/or developmental disabilities but is very well done and could serve as a basis for instruction. It’s available to stream free on YouTube and I’ve posted it here. You can also find it available for purchase if you would prefer a DVD.
This is the puberty episode…
The series also has a reproduction episode but it’s presented with the baby as a “body snatcher” which I think would be very confusing.
A lot of the curriculum we used for the puberty unit of our Human Sexuality 101 group was adapted from “Teaching Sexual Health“. They are a group out of Canada that provides support for teachers and parents. I used their general curriculum but they also have a curriculum for students of differing ability levels. They have great resources for parents including “webisodes” that give examples of parents talking to kids about sexuality topics. The website is very well organized and easy to use!
In preparing for the puberty section of Human Sexuality 101 I was looking at research on methods for teaching young girls with ASD about menstruation and came across an article using Social Stories (only a preview of the article is available for free).
In short, here’s the Four P Plan for Period Support
1. Prepare a period kit
2. Preinstruct (perhaps using social stories)
4. Plan for pain relief
Klett & Turan used a combination of three Social Stories adapted from Mary Warbol’s “Taking Care of Myself: A Hygiene, Puberty, and Personal Curriculum for Young People with Autism” (this book is not just for girls). They implemented the social stories before menarche (first period) and then planed to revisit them after menses began. These stories focused on growing up, what a period is, and how to take care of a period (I would reprint them but you have to be careful about Social Stories and their copy rights). They also used simulations with the girls using red syrup so they could practice changing a “used” menstrual pad. They reviewed the social stories over several days and completed simulations over several days. They also used different types of menstrual pads in case the girls did not always have access to the same type. They also asked the children questions about menstruation to check for comprehension (such as “What is the blood from your vagina called?” and “Do you need to wear a pad when you don’t have your period?”). This method proved effective in these case studies and the parents who implemented the plans where happy with it.
I have a good friend who made a menstrual kit for his daughter to start keeping in her book bag around age 11. In a zip lock bag he placed a change of underwear, menstrual pads, Tylenol, a change of shorts, and bathroom wipes. That way, if her first period was at school, she had everything she needed and wouldn’t need to ask for support unless she wanted to. I personally think this is a wonderful idea and wish my mom had thought of it when I was middle school! This idea has caught on because you can buy premade kits. Also, they make underwear that help keep menstrual pads in place.
I have heard that some families also preemptively use pain relief to support with discomfort and PMS. Not all girls associate the physical discomfort with their period or are able to communicate “I feel bloated” or “I have cramps.” Although these are phrases that you can teach and prompt, some families just start using an over the counter painkiller two or three days before they anticipate the start of the period. This isn’t foolproof because, especially when girls first start getting their period, they may have irregular cycles.
I’m really excited about this free curriculum, “Sexuality Across the Lifespan” by: DiAnn L. Baxley and Anna L. Zendell. It has versions for educators, teachers, and Spanish speakers. You can view the curriculum by clicking on the links below.
What makes this special? They do a nice job at adjusting lessons for different age groups, giving ideas for supplemental activities, and giving ideas for incorporating the topics into routines. The parent version really focuses on how to reinforce healthy sexual development through interactions and daily routines.
This curriculum in not comprehensive but does have sections on social skills, dating, sexual abuse, puberty, and anatomy. I hope you find this useful!
“A Thinking Person’s Guide to Autism” is a wonderful resource and online community. They have a blog, facebook page, and book so you can check them out in what ever way is most comfortable to you. Although they deal with many topics related to Autism Spectrum Disorders, they often touch on topics of sexuality.
I especially would recommend checking out this post, “Talking About Sex with Young Adults with Autism” Here’s an excerpt.
“Amy looked nice, but the grown-ups wouldn’t let us go in Amy’s room and shut the door.”
“Did Amy want to go in her room with you and shut the door?”
“Not really. So we went outside and the parents kept watching us.”
“Did Amy want to be alone with you outside?”
“I’m not sure.”
“Did you touch Amy?”
“I wanted to. I wanted her to lie down on the grass so we could do sex.”
“Have you ever had sex with anyone else?”
In a parent focus group* on the topic of sexuality and their children with ASD several interesting themes emerged: parents struggle with what healthy sexuality looks like in their child with ASD, they feel their child’s social impairments make many sexuality topics difficult to understand, they feel the community does not understand the sexuality needs of their child, and they feel unprepared to support their child with their sexuality need.
Does that sound like you?
These researchers made several suggestions for parents. Although they were focused on children with ASD, I think this would be applicable for almost all children. I think they are also good things for professionals to keep in mind too!
1) Lean about sexuality and ASD as well as sexual development in general.
2) Think about your hopes and fears for your child. Also think about your own experiences learning about sexuality.
3) Set goals for your child (and I would maybe modify, to the degree that they are able, with your child).
4) Think about the method to communicate these messages to your child.
5) Coordinate with schools, physicians, ect.
I have found a book that may be useful called “Adolescents on the Autism Spectrum: A Parent’s Guide to the Cognitive, Social, Physical, and Transition Needs of Teenagers with Autism Spectrum Disorders “. You can get a pretty good preview on google books to make sure it is right for you. I like it because it talks about ASD in general and then weaves in topics related to puberty. It also thinks about changes from multiple domains. For example, one suggestion was realizing your teen might need more control and finding ways to incorporate that into his or her daily life.
This tip sheet from the Better Health Channel may also be helpful: Sex education for children with intellectual disabilities – tips for parents – Better Health Channel
*Only a short preview of this article is available for free online. Although the entire article is available for purchase it is written for an academic audience.
If you attended the workshop you might remember an activity we did called “Boys/Girls/Both.” This activity was adapted from the F.L.A.S.H. curriculum. Basically, you give students 3 signs: one that says “boys”, one that says “girls”, and one that says “both.” You also hand out sheets of paper with different changes that happen during puberty (each sheet has its own item on it). You then instruct students to decide if the change happens to boys, girls, or both. I have created a visual support so instead of just having words you can also use pictures. Click here to get a pdf of the support:
Boys, Girls, Both pictures.