Puberty and Sexuality Education for Autistic Youth, Part 1: Sexual Health Education at Home and in Schools
June 18, 2024
This month’s Conversation About Autism focuses on experiences with puberty and sexual health education. We asked Brett Niessen, senior health educator, University of Washington adjunct faculty and private consultant, to share his expertise and resources for helping children and youth with intellectual and developmental disabilities learn about their bodies; relationships; appropriate behaviors in private and public; and sexuality. Part 1 is about sexual health education. Part 2 of this series addresses the topic of sexual assault and abuse.
First, a little about me. I’m a health educator at Seattle Children’s Hospital, and I work closely with the Autism Center. That means I help them with written materials, classes, videos and web content so information about conditions or treatments is easy for people to read and understand. I also teach a graduate-level public health class at the University of Washington. And as a private consultant, I train teachers on how best to teach sexual health education, especially that’s inclusive of kids with disabilities, who are neurodiverse or who are LGBTQ+. I have specialized in this area for the past 20 years.
It can be challenging for any parent to navigate things like puberty; sexual urges; the difference between public and private spaces; or dating and friendships. And if your child has autism, there may be extra challenges. But discussing these topics also has the power to help your child stay safe, have rewarding relationships and get medical or behavioral help when they need it.
What is sexual health education, or sex ed?
Every child deserves comprehensive sexual health education, or sex ed for short, including children with autism or other physical, intellectual and developmental disabilities. Comprehensive sex ed means kids learn about everyone’s body – how they change during puberty and how they work inside, how pregnancy happens and how to prevent it. They learn about abstinence and birth control, ways to prevent and treat sexually transmitted diseases (STDs), sexual orientation and gender identity.
Sex ed also teaches communication skills, like how to ask for consent and take no for an answer. It teaches laws about sex; how to recognize sexual assault, abuse and rape, and how to get help if they happen; and how to get healthcare and find community resources.
Laws about sex ed vary widely, and many states have moved to eliminate sex ed entirely; or only talk about abstinence; or remove topics like sexual orientation, gender identity or birth control. But the fact is, sex ed works: after hundreds of research studies, comprehensive school sex ed curricula have been proven to delay first sex, reduce unplanned teen pregnancy, decrease sexual assault, increase use of condoms and increase awareness of unhealthy relationships.
What sexual health education will my child receive in school?
Washington state requires school districts to teach sexual health education to all students in grades K-12. You can read the state standards to see what is recommended by grade level. For younger kids, in grades K-3, the content is really social-emotional. All sex ed must be medically accurate, developmentally appropriate and inclusive of students from all protected statuses (race, gender identity, sexual orientation, disability, etc.). When it’s age-appropriate, it must include abstinence and all ways of preventing pregnancy and HIV/STDs.
Schools must inform parents about upcoming sex ed at least 30 days before instruction begins. You can ask your child’s teacher what curriculum they are using and review it. Parents have the right to opt their child out of sex ed – either one, some or all lessons. But most parents support sex ed in schools! In a recent survey, 70% said sex ed is important for the well-being of children.
Students who are in mainstream classes usually receive sex ed from their classroom, science or health and PE teacher. Students in self-contained classrooms may receive it from their special education teacher. Historically, students with 504 plans or IEPs (individualized education plans) were left out of sex ed for a variety of ill-informed reasons. There are plenty of educational materials aimed at students with special needs along with training opportunities for teachers.
What can I do at home to help my child learn about their bodies, sex and relationships?
School sex ed is just one component of what a young person needs to learn about puberty, their bodies and growing up. Once a person has a cellphone or tablet and internet access, they can see or read adult content. They can access pornography or chat with strangers over apps like Instagram, Telegram or Snapchat and various dating apps.
Children need our help navigating and understanding what they might find online, including the myths and false information. There’s some evidence that women are getting off of birth control due to misinformation on TikTok. Now we even have AI chatbots sounding very human-like in their responses, enough that some people see them as romantic partners, and hallucinating facts that are not true!
Talking about bodies, sex and relationships may seem scary, but it has the potential to positively impact your child’s physical and mental health and life satisfaction. If you feel awkward talking about sex and puberty with your child, you are not alone! Here are some tips for doing it right:
- It’s important to have many talks (not just one!) about topics like changes their body will go through, how to ask people on a date, how to have a reciprocal conversation, how to take no for an answer and what’s appropriate in private and public spaces.
- Start young with accurate names for body parts (like penis, vulva and vagina), explaining private space for undressing or masturbation and saying no to sexual touch from others.
- Children with autism may need extra coaching on social skills and dealing with big emotions. It may be harder for them to “read between the lines,” get slang and subtext and negotiate shared interests with dating partners. You can help by asking for these skills to be part of an IEP or 504 plan, or working with a therapist or medical provider who specializes in autism.
- It’s more common for people with autism to identity as gay/lesbian/bisexual/asexual or transgender/gender nonconforming than for people without autism. You can explore definitions and resources and get support if your child expresses one of these identities.
- When you get tough questions, I recommend the guide Strategies for Answering Sexual Health Questions by Public Health – Seattle & King County. It’s geared towards teachers, but it can be especially helpful when you get value-laden questions about topics like abortion, teenagers having sex or masturbation.
- Use plain language and explain idioms, acronyms and figures of speech that can be ambiguous like “going out” or “hooking up.”
- If your child uses an AAC (augmentative and alternative communication) device, you may need to add in new vocabulary to have these conversations.
Here are some great resources to learn more about how you can best support your child with autism, or if you have autism and want to get your questions answered:
From Seattle Children’s
- Autism Center Patient and Family Education page – scroll down and check out the Safety; Self-care and life skills; and Sexuality and transitioning to adulthood sections.
- Puberty and Sexuality Education Resources for Youth With Autism – includes links to resources such as visual supports to use with non-verbal children and youth.
- The Chat: Live Online Workshops about Puberty and Sex – parent and child attend these virtual sessions together.
From other, trusted online sources
- Sex Education and Puberty, National Autistic Society
- Conversations: Dating and Having a Social Life, Informing Families
- An extensive list of books, articles and videos about autism and sexuality for parents, singles and couples from Psychology Today
- Teenagers With Autism Spectrum Disorder, Raising Children
- How do I teach sexuality to a person with ASD?, Autism Awareness Centre
- Learning Disabilities, Autism and Internet Safety: A Guide for Parents, CEREBRA
- Go Ask Alice, Columbia University – a medically accurate question-and-answer service for anything related to sexual health, geared towards older teens and college students
- National Council on Independent Living on YouTube – videos by people with disabilities explaining sexual health topics