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.
Autism Now isn’t specifically focused on topics related to sexuality but they do have some great resources I thought I could highlight.
They have a series of webinars related to sexuality topics. If you click on the link you’ll be taken to a registration box that you have to fill out to view the material. I’ve also included links to the slides- this is a direct link, you don’t need to register.
Slides: “Sex is when people use their bodies together to share love and pleasure.”
Slides: “Research says that the IQ has to be below 50 before you can say IQ and parenting skill are connected (Feldman& Tymchuk, 2002).”
And they just had one on May 15th, but you’ll have to keep an eye on the archive list because it’s not up yet- “Let’s Talk About Sex: Discussing the Topics of Sex, Protection, and/or Sexuality from Three Unique Viewpoints”
In addition to the webinars they have some general “fact sheet” style info that might be helpful on topics such as dating, marriage, divorce, relationships, sexuality, parenting, and friendships. These include general information as well as parent tips.
I was really impressed by the quality and quantity of ASD related resources on a variety of topics so it’s a good one to have in your tool belt.
I just wanted to link to one other power point presentation that I thought had a lot of good information. “Sexuality & Sexuality Instruction with Learners with Autism Spectrum Disorders and Other Developmental Disabilities” by Peter F. Gerhardt, Ed.D., Director The McCarton Upper School
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.