For Judy Blake, a mother of two sons, both with autism spectrum disorder, it was important for her to have the sex talk with them at an early age, in clear and specific terms.
"A parent of a child with special needs doesn't just have to be two steps ahead, but 10 steps ahead," said Blake, author of the book, "Judy's World," which discusses her experience as a mother to two sons with autism. "For many kids, learning about sex requires a lot of repetition about safety, appropriateness, social cues and relationships."
Lorraine Merkl, mother of an 8th grade student at the Aaron Academy, a special education school based in New York City, agrees that sex education must be presented in a gradual, individualistic and repetitive way for many children with intellectual disabilities.
"The school does a good job of laying the foundation of sex, the nuts and bolts, but allows parents like me to talk to their kids about the emotional and moral aspects of sex," said Merkl, whose daughter has Attention-Deficit Hyperactivity Disorder, or ADHD.
That's because the school makes a conscious effort to incorporate sex education in its mission to educate mindful and responsible adults.
"We have specialized instruction around difficult issues," said Barbara McKeon, director of the Aaron Academy. "Many students are physically mature, but not there emotionally. They are a more vulnerable part of the population, being bombarded by media and social networking, it can be difficult to sort out what is expected."
The Aaron Academy follows an educational framework based on research in cognitive neurosciences. The method encourages flexible learning environments that accommodate individual learning differences, and sex education is a key modality in the school's education mission.
New York City schools are mandated to teach sexual education. Nevertheless, McKeon said "sex ed is not the goal, but a part of the process" at the school.
Relationship and decision-making concepts are built into the school's courses. There is focus around health and hygiene for teens going through puberty and students keep journals to write down thoughts they do not want to discuss out loud. Role play is an important aspect of the learning processes, McKeon said, and all students are encouraged to keep a journal and write down thoughts or experiences they are not comfortable sharing in front of the class.
"You want to accommodate information that accommodates to the unique needs of each student," said Sarah Miranda, a licensed social worker and associate executive director of the Federation for Children with Special Needs. "You're teaching the curriculum for everyone with disabilities, but with each person, you want to adjust and modify it, then go back each year and make sure to see which information is being retained. There tends to be a lot of repetition."
McKeon also said administrator use a "red light, green light" tactic. If students say something inappropriate to another teacher or student, they will hear "red light."
"The inappropriate comment will fade off and the students are able to process appropriate conversations in a better way," said McKeon.
When discussing any type of learning, Bethany Stevens, a disabled sexologist on faculty at the Center for a Leadership in Disability at Georgia State University, said individualized modalities of learning are important for any type of student, disabled or not, in order to "reach your crowd in the most meaningful way."
Teachers need to create an environment that is comfortable and without shame when discussing sex.
"It's easier to reinforce positive behavior than to shame people when they're doing something wrong," said Stevens.
There is this idea that people with intellectual disabilities aren't going to be sexual, she said, but pleasure, including masturbation, is a right for all people, and that idea should be taught in an appropriate way within sexual education.
There also tends to be a public perception that, if we teach any type of person about sexuality, they're immediately going to act upon it, said Stevens. In particular, with people with intellectual disabilities, there is "a lot of fear that it's going to be uncontrollable and the public needs to control their most vulnerable citizens."
"Intellectual disabilities get wrapped up in the fear that people will take advantage of them," said Stevens. "This is a legitimate fear, but we also have a right to say 'yes' as much as we have a right to say 'no.'"
For more information regarding sexuality in people with intellectual disabilities, Stevens recommends visiting the website of the Sexuality & Disability Consortium with the Institute on Disability and Human Development at the University of Illinois at Chicago.