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Heather Corinna replies:
I am 17, and I have a 15 year old sister who is Autistic. I also come from an EXTREMELY Catholic family. I never got a sex talk - I straight-up asked my dad what sex meant when I was 9 or 10, and he gave me some very unhelpful answer about a gift that God intended to be shared between a man and a woman in marriage. I, however, had enough resources like gurl.com and, you know, friends with older sisters to eventually get the full picture. My sister does not.
Katie knows about menstruation and deals very well with it, but at last check she barely knew what her parts were and she does not appear to be receiving any meaningful sex education in school - that's my school district through and through. But Katie is physically mature, and I'd bet almost anything that she's experiencing age-appropriate sexual feelings.
RespectIsSexy's question continued
We share a room, and often if I walk in unannounced I'll find her seemingly lying on the bed doing absolutely nothing, looking irritatedly at me - the exact position I can be found in if interrupted masturbating. In light of this, I really think it's necessary that she receive some kind of sex education right about now. The only time the subject ever came up between her and my father, all he said was that that thing was called her vagina and she shouldn't let anyone touch it until she was married. Yeah, THAT'S helpful.
So it's going to be MY job to give my sister some kind of age-appropriate sex education before I go off to college, or she's never going to get it. Where the hell do I START? What should I DO? It's difficult to determine what age-appropriate sexual education is for someone whose mental age lags years behind her physical age, but I think that it's about time to start her off with the basics that most people learn around ages nine and ten - at the very least I think she ought to know her plumbing, and preferably the boys' too. And I think she needs to learn the tab-A-into-slot-B mechanics within the next few years, if not right now. It would be nice if you could recommend a book or something like that made for elementary-school students that talks about sexuality and the reproductive systems in a scientific-but-not-too-technical, kid-friendly way. Is there any such book ANYWHERE that will talk about sexual arousal and that sort of thing without actually talking about sex?
Book or no book, I think I'll probably have to have an actual Sex Talk with her, or a series of them, and I'm at a loss for how to handle that. How on Earth do I introduce it? What if she doesn't understand? What if she reacts poorly? What if she brings up her new learning at the dinner table? Special needs children can not keep secrets. It's absurd enough that I have to sex educate my sister behind my parents' back without my getting bawled out for it. What if she brings it up at SCHOOL? In your opinion as a sex educator, what would be the best way to broach the subject and conduct the conversation, and what information do you think should be covered? Do you have any experience or know anyone with experience in sex education for teenagers with special needs? You'd think loads of people must have faced this issue before me...
Before I say anything else, I want to say how fantastic it is that you're looking to help a sibling with sex information and education, and to be an advocate for your sister in this. Young people, period, so often get gypped out of good, complete sex information -- as you know too well -- but those with special needs usually get cheated even more. You're my shero today!
I was at a fantastic disability panel at a conference last week (here's the whole text of that panel for you, and a bunch of great resources are linked there), and one thing those on the panel reminded us about was that rates of sexual abuse are around double for those with disabilities. Rates of sexual abuse for the disabled are 1.5 - 2 times higher than for those without disabilities, which is massive. In 2002, The Alberta Committee of Citizens with Disabilities stated that 83% of women with disability will become sexual abuse victims with disability in their lifetime. So, while information on sex, reproduction, health, healthy relationships and pleasure are important for everyone, as is information on abuse, education that helps protect your sister from sexual abuse is even more important than usual.
The bare basics of a good sex education, according to me, are going to address the body and self as a whole, including sexual anatomy and reproduction, care of our sexual health, sexual identity (bear in mind that we don't know what your sister's orientation is, so even the Tab A/Slot B stuff may not be the tabs and slots you're thinking of, so I'd be sure not to presume she'll be sexual with men or only men), sexual feelings in general, whether they be self-directed or about others, personal limits and boundaries, healthy and unhealthy sexual and relationship dynamics, and ways to communicate openly and well (verbally, through touch and body language, or any of her unique or preferred modes of communication). I always like a very strong emphasis on autonomy and our right to privacy (as well as what is and isn't generally considered socially appropriate per public sex), and I'd say that's all the more important for someone with a disability: they tend to get even more messages than most that their bodies are not truly or completely their own and that they are not entitled to privacy. Additionally, I'd suggest talking about feelings of social isolation and discomfort she may have because of her autism, as that will very likely be a sexuality issue for her. I'd also do all you can to empower her with the understanding that it is no less normal or appropriate for her to be and feel sexual than it is anyone else: that message alone, even if you gave her nothing else, is so powerful.
The actual mechanics of sex -- as in, this goes here with that, wiggle your hips like this, use your tongue like that -- are actually something I think fewer people need, period, particularly when we're talking about learning those abstractly, rather than with partners which is how any of us usually learns the how-to. If she can get an understanding of anatomy and accurate sexual anatomy, of limits and boundaries, and have some sense of what desire, pleasure and intimacy are, the rest follows pretty easily if and when she gets to having sexual partners. It's tough to try and tell someone about mechanics in any depth because it's all so individual to each of us per what we and partners like and dislike, do and don't want to do: the trick is to learn how to listen and communicate around sex so that when we are at sexual partnership, we learn and teach each other well in those partnerships per what we like and don't. Plus, your experience of sex as someone without autism may be different than hers: for instance, you're probably not as sensitive to touch as she is, so your ideas about mechanics may not jibe with her experiences in her own body.
Know that people with disability usually go through similar stages of development as their peers without disability: often people with disabilities are seen or treated as either totally asexual or as hyper-sexualized, but the truth is that overall, disabled people tend to develop like the rest of us and have the same diversity of sexuality as the rest of us. Developmentally disabled people just may think differently about it in terms of the way they think about anything differently, and may be different in some of the intellectual or social aspects of that development, so will often need to be taught about sex in a way that works for them uniquely. And again, how someone with a given disability literally feels with sex, what their experiences are like, can sometimes be different than the experiences of those without disability.
If you're looking to build a curriculum for your sister, I have a bunch of book suggestions -- not just one! -- which I'll order for you in terms of ages and stages. Most of them are colorfully illustrated, which should be a big help. I'd say most of them also leave a lot of room for difference of experience and identity, though some do better than others.
I put a pretty big range of materials in there for you. My suggestion would be that you look at some of the books a bit down the page I have suggested for you to read for yourself, and also to trust your own understanding of your sister -- which is clearly exceptional -- and just pick and choose what you want to use. That will probably mean using parts of any number of those books, rather than whole books. You may want to use this page from here, this chapter from there, and also do some adapting of your own in terms of how you translate some of the material for your sister.
You might also want to look at some of the sex education materials online here at Scarleteen (or at gURL, since you found what you needed for yourself there), and adapt them to best suit your sister.
You can take a look at those books or materials online and, trusting your judgment, figure out what is best to start with. I'd suggest starting with the simplest, and also the most basic: the books for the youngest readers which focus mostly on anatomy, boundaries and basic sexual development. You might even just start with the first few of them and put them on a table between you and see which she is drawn to on her own. As the kind of educator I am (I've been teaching in various settings for close to twenty years now, and actually started my teaching career with developmentally disabled teens and adults), my feeling is that what we want to do is get a sense of what a given student's unique needs are, starting from the simplest place we can. If in doing that, they show us a level of boredom or mastery of the subject when we do that, we keep moving it up until we get to where they are. It's also a good idea to simply be as attentive as you can to her questions and statements, and be responsive to those: often, if we just actively listen to someone we are teaching well, they'll tell us their needs and wants quite directly.
As far as introducing the subject, it seems to me like in some way, you have an easy in because of your experience with your parents. You could absolutely tell her that when you were growing up, you felt like there were some things you needed to know about your body and yourself that you did not know. You could suggest to her that she might feel the same way, ask if she does, and ask if she'd like you to give her some of that information. Given how close you two are in age, and given she's spent her whole life with you and you obviously have a lot of love for her, it sounds to me like she's going to feel safe and trust you very easily. You might even just tell her that this is something older sisters tend to do for younger sisters, given that it really is. In the case she doesn't understand what you're talking about with her, ask her questions to clarify what she needs and how she needs this presented, and just be sure you're not giving her too much information at once. By all means, getting all of this information to her will require far more than one talk: heck, anyone needs more than just one talk about sex and sexuality, despite the common idea that parents have "The" Sex Talk, rather than a series of them.
You will likely need to tailor or simplify your language sometimes, or find ways of presenting things that is more than just verbal: such as by providing visual representations, or through activities that involve touch or other kinds of interactivity. You probably already have those skills down given how long you have interacted with her for: you're just applying them to something new.
For example, if we're talking about personal boundaries of her body, you can ask her to touch, on her own body, places that are hers alone or to draw them. You can practice some sexual refusals with her, and have her say her own refusal scripts out loud with you. If you're talking about sexual orientation, drawing stick figures of different sets of partners per gender may be needed: often, autistic people do very well with visual learning. I'd suggest you do anything you're having her do: make activities shared, rather than just about her. The Autism Research Institute has a good, basic page on learning styles you might find helpful here. I'd just add that you'll want to bear in mind with anything you might teach her through touch that with any kind of touching of her, you're giving her information about boundaries. So, do be sure anything where you are touching her is in alignment with what you're telling her about her right to boundaries and ownership of her own body. You'll also want to bear her own hypersensitivities or hyposensitivities in mind when teaching her, sticking to things she reacts well to to use them TO teach, and avoiding anything she tends to react poorly to or become upset by.
I hear your concerns about her reacting badly, but as a sex educator, I can assure you that you probably don't need to have those concerns, for a few reasons. For starters, any of the material I suggested is sensitive, it's not salacious, and it is all meant for young people. As well, when we're teaching anything, one of the first things we tend to learn is that when someone isn't interested in or ready for given content, they tend just to be disinterested, or not to retain that knowledge, rather than to freak out about it. In the case she is upset by anything you say or seems scared, you can ask her about those feelings and talk them out with her, and you can also remind her that you are there for her as a support. However, if you want to know more about teaching her in general, you might see if you can't chat with one of her teachers about general issues of teaching her and what has worked best for her with other subjects. Too? Just having a teacher who clearly cares for us and respects us, and demonstrates that clearly, is usually all any of us will need, regardless of our abilities, to feel safe, even with touchy or tough subjects. She's already got that with you.
I have some books for you to read yourself:
Here are a couple good links online on sexuality and autism:
While I'm talking about things for you, I want to make sure you're not shouldering more than you can handle.
I think your sister is very lucky to have you, and that it's great you want to help her with her sexuality education. But at the same time, I also want to be sure you're not essentially parenting her yourself, because you don't have the kinds of resources your parents probably have, including the support of others in parenting someone. This is also a big project. I think it's a manageable one, but it'd be really ideal if you had some help and some extra support with it.
One way I'd make sure you're caring for yourself in all of this is by doing what you can to assure that you don't basically wind up demonized for giving her this information, and that you also have some help with this. Does your sister have at least one good healthcare provider, teacher or caretaker you feel like will be supportive of this, and might also help you out with some of this education? If so, that'd be really ideal, both to help share the load, to have as good an idea as you can of what your sister's needs are, but also to have someone who might be able to talk to your parents about the need for this information. A good professional with this will probably also point out to your parents that many teens -- with or without disabilities -- don't get all or even most of their sexuality information from parents, and many do feel most comfortable talking with someone like a friend, a doctor, a teacher or an older sibling. I think it's going to be much better for both of you if your parents know what is going on than if you're trying to hide this in any way.
You might also want to share some of the information and books on sexuality and autism with your parents. I recognize this is all doubly challenging since your parents have not seen a need for either you or your sister to get any sexuality information, and because of their religious beliefs, but again, I want to be sure you are as well supported as possible, as is your sister. You're right: expecting her to keep secrets is not at all reasonable, and I'd want to be as sure as we could that neither of you felt like you had to, for the well-being of you both. What I brought up earlier about her risks of sexual abuse might be an easier-in with them: if you make this about protecting her (which it is, mind, that's just not all it is about), and can make clear how that is even more important for her than it is for those without disabilities, it might be an easier sell. It may be that you and your parents can reach an agreement about at least getting her some of the most basic information. Their discomfort with sexuality and them being very conservative about it is going to be an issue, for sure, but it seems possible to at least get on the same page about her safety, about her understanding her body and human reproduction, about her developing healthy limits and boundaries and ways she can express those. And I'd say that kind of information is what's really critical, anyway, and that you can likely sneak in some pieces about pleasure and identity in that stuff under the radar.
I'll be honest and say that I'm not sure how you can really do completely on the down-low, particularly when it comes both to protecting yourself AND not having things your sister says result in your parents freaking out with her, which could obviously impact her negatively. But if that is what you wind up having to do, I'd see if you can't find someone you know will be supportive of your efforts who your parents respect to call on if you wind up caught in the act, as it were, and need some support.
In terms of your concerns that she would share this information at school, I'd not worry about that. Yes, she might, but these are not issues any teacher should be surprised to hear someone her age bring up. It also should not surprise anyone teaching the developmentally disabled to have them brought up very candidly or out-of-context. In other words, my advice would be for you not to worry about her teachers doing their job: you have enough on your plate as it is, and you are not breaking any laws or doing anything wrong by giving her this information. In other words, you're not at risk of getting into trouble from the school if she discloses any of the information you have given her.
I know that was a lot of information, even though I feel like I barely scratched the surface. But hopefully, it will get you started, and those books I suggested for you will absolutely take things from here.
Lastly? If you need some more help with this, and have a tough time finding others to help, or even just need some support as a caretaker, please feel free to come back here or to our message boards and ask for more help, other books, or extra information. I'd be happy to give you any more help that you need and that I can provide.