OT + Accessible Sexual Health Information: Sex Ed for Folks with IDD

One question I often get asked is, how should I address sexuality and intimacy with teens and young adults? And I get it... it sounds like it can be an uncomfortable conversation to have! But, I'm here to tell you it doesn't need to feel that scary. There are a handful of topics that fall within our scope of practice and relate to sexuality and intimacy.  

If you haven't already heard of the podcast OT After Dark, it's another great resource for learning more about this niche world of sex, intimacy and OT. Episode 19, Accessible Sex Education: Addressing the Sexual Needs of Individuals with IDD (Intellectual and Developmental Disability) is a great listen and is available on Spotify and apple podcast!

In this episode Dr. Elizabeth Schmidt, PhD, shares her dissertation research and current recommendations on how to address sexuality and intimacy with teens, young adults and more specifically individuals with IDD. 

Individuals with IDD have greater rates of sexual abuse and assault. They also experience more negative pregnancy outcomes and are at increased risk of contracting STDs.

These facts alone show the need for more professionals to step up to the plate and start address sexuality and intimacy.

It's easy to feel overwhelmed when you need to talk about sex. So much that you forget about other topic areas that deserve attention and relate to sex too. For example...

• Birth control options - would your client benefit from education on options and available resources?
• Female hygiene- let's not forget this is an ADL, too!
• Medication management (contraceptives)

....to name a few!

As OTs we are skilled in performing task analyses and recommending adaptation and modifications when necessary. When it comes to addressing sexuality and intimacy with teens our role is no different. Perhaps Susie needs help setting up a daily reminder to take her birth control so that she can maintain a healthy and safe sex life. And maybe Mike wants to learn how he can practice safe sex but doesn't know how to use a condom.

But, before we jump into HOW we can address sexuality and intimacy let's start with some key steps we need to take first when working with teens: 

1. First, obtain parental consent- This is definitely a must when working with children and teens. It's also important for us to be transparent with younger clients and let them know that we are required to voice our concerns with their parent(s)/guardian(s), when their safety is a concern.  

2. Be clear and explicit with the language that we’re using, especially when referring to specific parts of the body. For example, we want to use terms like vagina and penis, not code words or alternative names.

3. Look into your state rules and your organization rules. Rules and guidelines for working with children and teens can vary state to state. It's important to be aware of what yours are. There can be age restrictions on when you're allowed to address sexuality and intimacy.

Once you've ensured you're practicing within your state and organization's guidelines it's time to talk about it!

"We need to overcome our own embarrassment and make sure we are addressing these things."

Dr. Elizabeth Schmidt, PhD

Intervention Strategies based on Dr. Schmidt's research:

1. When in doubt and feeling unsure about where to start, start with a video. Pictures and videos were unanimously appreciated by the teens and young adults. 

2. Remember to be explicit in your language and teaching. No code words.

3. Activity based learning is a great choice. (I.e. modeling behavior, role playing, and use of video modeling should all be considered when addressing topics like hygiene, relationships, menstruation management, etc.)

4. Don't forget your keen ability to perform a task analysis! Know what the individual client’s needs are and incorporate adaptations as necessary.

5. Re-direction and re-enforcement are helpful when working with individuals with IDD. Use of clear instructions and consideration of the most appropriate type of feedback to give for the client (corrective, prompting, repeated practice, etc).

6. Don’t let preconceived ideas or bias impact your treatment. Remember that everyone has a right to sexual identity and having a family.

7. Don’t be afraid to ask questions. It's important to understand what the client is talking about so be sure to ask for clarification.

Like so many other client populations, we as OTs need to advocate and use our voices more in this area. We’re qualified to address these things and so much of what we already do can be applied to sexuality and intimacy. 

Don't be afraid and remember to consider all of the ADLs and IADLs that impact the client's occupation of sex!

Great resources to utilize:

Dr. Elizabeth Koss Schmidt, PhD, OTR/L

FLASH Sexual Health Education Lesson Plans

SHEIDD Project