Woodbine House

While the mainstream is becoming increasingly aware and accepting of disabilities, there is still a lack of representation. People with both physical and intellectual disabilities rarely ever see people like them in books, movies, on TV, or in many other forms of entertainment. On top of this, resources regarding sexual health, relationships, and puberty for disabled individuals practically don’t exist.

Woodbine House is a publishing company that specializes in informational books for individuals with intellectual disabilities. They have many books aimed at all different age groups that provide information on an array of topics pertaining to disabilities. On their website, they have different sections for Down Syndrome, Autism, and ADHD/ADD. Some of their sexual health based books include: Teaching Children With Down Syndrome About Their Bodies, Boundaries and Sexuality, Boyfriends & Girlfriends: A Guide to Dating for People with Disabilities, and A Boys/Girls Guide to Growing Up. These books help teach people to identify body parts, how to identify/express emotions, personal hygiene, dealing with puberty, relationship safety and many other things.

Every one of their books features people with the disability they’re discussing, and they provide accurate and accessible books for all ages. These books are non-clinical and easy to read, and they are intended for everyday use. On top of this, they’re extremely accessible and informational. This company consistently provides parents and children with informational books that are practical, empathetic and empowering, and they push disabled issues into the public eye. It is a great example of increasing representation and inclusivity in media!

The website is linked below:

https://www.woodbinehouse.com/

Wait, What: A Comic Book Guide to Relationships, Bodies, and Growing Up

The recently released comic book, “Wait, What: A Comic Book Guide to Relationships, Bodies, and Growing Up” by Heather Corinna and Isabelle Rotman gives insight to a sexuality, gender, and related issues in an inclusive and fun format. From the publishers:

“Join friends Malia, Rico, Max, Sam and Alexis as they talk about all the weird and exciting parts of growing up! This supportive group of friends are guides for some tricky subjects. Using comics, activities and examples, they give encouragement and context for new and confusing feelings and experiences.

Inclusive of different kinds of genders, sexualities, and other identities, they talk about important topics like:

– Bodies, including puberty, body parts and body image
– Sexual and gender identity
– Gender roles and stereotypes
– Crushes, relationships, and sexual feelings
– Boundaries and consent
– The media and cultural messages, specifically around bodies and sex
– How to be sensitive, kind, accepting, and mature
– Where to look for more information, support and help

A fun and easy-to-read guide from expert sex educators that gives readers a good basis and an age-appropriate start with sex, bodies and relationships education! The perfect complement to any school curriculum.”

Talking About Sex: Sexuality Education for Learners with Disabilities

From the Publishers:

Key social and emotional milestones during adolescence are often directly related to the abilities to initiate and maintain intimate relationships, maintain physically maturing bodies, and manage personal sexuality. Most adolescents with developmental disabilities have particular difficulty expressing sexuality in satisfying ways, consequently facing issues such as limited intimate relationships, low self-esteem, increased social isolation, deregulated emotional maintenance, reduced sexual functioning, and limited sexual health.
Appropriate sexual knowledge assists not only in achieving personal fulfillment, but protection from mistreatment, abuse, unplanned pregnancies, or sexually transmitted diseases (STDs). It also works to help solve problems of loneliness and problems with self-esteem.
This book will address this but also much more. Issues of physical and cognitive development will be discussed, including appropriate sexual development/urges and brain development, and innate similarities and differences of sexuality that could occur between people with autism spectrum disorders and intellectual or developmental disabilities, including the complexities of physical disabilities. The authors will also consider special considerations for group homes and recreational facilities, and specifically focus on concepts of ethics and models of consent (medical, legal, social, and educational), as well as how to deal with uncertainty.

The Ultimate Guide to Sex and Disability

the guideThis book by Miriam Kaufman, Cory Silverberg, and Fran Odette is eye opening.  It’s written by people with disabilities for people with disabilities and focuses on the joys of sexual intimacy.  As a typically developing person, it challenged a lot of my assumptions about sex and made me think about new things.  Chapters include: Myths About Disability and Sex; Desire and Self-Esteem; Sexual Anatomy and Sexual Response; Communication; Sex with Ourselves; Sex with Others; Oral Sex, Penetration and Positioning; Sex Toys, Books, and Videos; Yoga and Tantric Sex; S/M; Sexual Health; Sexual Violence and Sexuality; Resources; and Glossary of Gender and Sex Terms.   I want to share two passages with you.

Sex and Spontaneity

“We’re taught that sex is suppose to be spontaneous, something that just comes naturally (like ‘true love’).  This belief is damaging to everyone, but is a real problem for people living with disabilities, because any amount of planning makes sex not spontaneous.  Believing in this myth pretty much ensures a lously sex life.
While sex has many meanings, at its heart sex is a process of communication.  Whether we are flirting from across a crowded room, giving someone head for the first time, or making love while listening to a piece of music that totally turns us on, being sexual is being in contact with ourselves and our surroundings.  The idea that this process can happen without thinking, talking, or planning is ridiculous.
Maybe we are willing to buy into the myth of sexual spontaneity because talking about our desires is difficult.  It’s risky, and makes us feel exposed and vulnerable, and often vulnerability is equated with weakness.”

This made me think a lot about the way I teach reproduction and sexual intimacy.  I tend to focus a lot sexual behavior, but not as much on the planning and communication that comprises that behavior.  Also, I do a lot of role playing, planning out what you’re going to say in advance, and scripting.  I’ve never really done that around negotiating intimacy.

Privacy

“If we were taught anything about sex at all when we were younger, many of us learned that sex was something private, inappropriate to talk about or do in front of others.  Privacy becomes a requirement for sexuality.
From someone living in an institution, or using attendant services, or needing the assistance of someone else to facilitate communication, privacy is a completely different reality.  The definition of privacy changes when you have no lock on your door, or when you request private time at a specific hours knowing that it will probably be written down in a log-book.  This myth is one of those ‘no-win situations,’ because we’re told that real sex is a private matter and, guess what, you can’t have that kind of privacy.”

This passage really challenged me to think about how I teach privacy and how I teach about relationship types.  I think sometimes I might ignore that what a lot of people think of as privacy and the individual I am working with reality of privacy are two disparate things.

I do wish this book focused a little more on people with intellectual disability and was written at lower reading level.  I do think people with ID/DD could read it with support, especially sections.  Much of the book is testimonies by people with disabilities and I think these passages could be great teaching tools.  There are also suggested exercises- one of the exercises was about looking at your body.  I teach antimony all the time, but I don’t think I’ve ever said, “when you’re at home, alone in your bedroom, look at and feel your body and check out the parts we’ve been talking about, you can even use a mirror.”

For Parents

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.