Susan's Blog

Sunday, May 1, 2011

Autism and Sexuality: The Elephant in the Room

Peter Gerhardt’s message about autism and sexuality is revolutionary in its very simplicity:  Sexuality is one of the most basic elements in our lives, and is inherent to what it means to be human; sexual behavior is one of our most vulnerable areas of our lives; and sexuality is a basic human right.  Therefore, it is of the utmost importance that we educate our autistic loved ones in appropriate sexual behavior to that they can keep themselves safe and happy.

Peter spoke yesterday at the LADDERS Conference in Massachusetts.  He made it clear from the beginning that he is not talking about people having sex, but rather, he is talking about sexuality as a defining and human characteristic of all of us.  Sexuality and sexual feelings are so basic, so important, and yet, there is very little literature or research out there as to how to teach people with autism how to behave appropriately in terms of their own bodies and other people’s as well.  This was not to be a talk on how to or whether to… but rather, what every human being, on the Spectrum or not, should know about safe behavior.

Stunningly controversial and yet utterly necessary.  So difficult to talk about, to think about, and yet, what do we all want for our children:  to be happy, to be safe.  What do we do towards that end, given that sexuality makes them so vulnerable to, frankly, disaster?  Peter and other experts suspect that somewhere around 60-80% of folks on the Spectrum will experience some form of sexual abuse in their lives.  This doesn’t mean rape necessarily, Peter pointed out, but that, too, is in there as a possible danger.

The lack of information is astounding.  There is nothing written on teaching ASD women about menstruation.  Nothing.  That means that every parent of every ASD girl has to wing it.

On one hand, we as a society are so out there when it comes to sex.  Peter pointed out how fascinated we are with sex — hundreds of slang words, Internet obsession with sex, debates about sex education in regular classrooms, teen pregnancy, innovations in the sex toy industries(visit Plug Lust for a wide selection) — and yet how telling that for some of our most disabled people, we are utterly silent.  What is implied by society’s attitude here, the silence, the lack of info,  is that a) people on the Spectrum do not experience sexual feelings or b) people on the Spectrum can’t be taught about sexual appropriateness.

Wrong and wrong.  We may not enjoy the task, but we have to be able to face and talk about our ASD children’s sexuality as something real, natural, and in need of guidance.  Peter made the point several times that whatever we have statistically in the neurotypical (“normal”) population, we can assume that we have in parallel in the autism population.  That means there is homosexuality, fetishes, fantasies, transgender issues.  We just don’t know about it.  The feelings are there; but because of communication disconnects, we don’t know about it and many on the Spectrum cannot express it.

I wish we could have a Public Service Announcement about developmental disability that says something like this:  Autism:  Everything you know about it is wrong.  Start from there.  Look at all of our assumptions as just that:  assumptions.  Autistics, no matter their functioning level, are full human beings and all that entails.

Does that scare you?  Does it sadden you?  Okay, then, deal with that.  But do not make the terrible mistake that you don’t have to help your autistic kiddo understand about his body and safety, because you are asking for trouble of the worst kind.

So what do we do?  Peter has what he calls The Five Year Rule:  always think ahead to what things we will need to have in place five years from now.  If the 5-year-old is running around the beach naked, we want to be sure he doesn’t do that at 10.  If an 8-year-old is touching himself in the classroom, we want to make sure he understands that he cannot do that there and then when he is 13.  Or 15.  We may have to start teaching him time and a placet now, if he is on the Spectrum, because the longer difficult behaviors go on, the harder they are to redirect.

Keeping the ASD child’s  future in mind, we need to also think about how to teach what they need to know, given their particular learning style.  If you have a person who is a concrete learner, a black-and-white thinker, then you’d better be sure that you are being clear and literal.  Do not put a condom on a banana and expect someone to be able to generalize this to their own bodies.  Use realistic photos, real words.  Keep the message simple and repetitive.  Peter even advocates allowing some silliness into the conversation, to break the ice.

Teach about what Peter called “The Circles of Comfort and Safety:”  who is in your life and what is their role?  The innermost circle is family members, loved ones, closest friends.  These can help you with personal needs like bathroom help.  Next circle, friends, cannot help you with that level of need.  The Circles illustrate who can and cannot touch you, even on the arm or the head.  It is all very well-defined.

You have to think about precisely what you don’t want to think about when you are a parent:  what your child needs to know when you are not there to buffer him.  You need your child to know to lock the door of a bathroom stall.  You need your child to know how to say “no” in one way or another.  You need your child to know that masturbation itself is not a crime but that it can only be done in the privacy of ones bedroom:  appropriate time and place.  You need your child to know who can help him and who should not.  If we use pictures and words that are not symbolic, but rather, visual and accurate and direct, we will probably succeed to some degree.

If we don’t know how to teach this, then we parents must start learning.  We must start demanding of our professionals that sexual safety goes way beyond identification of body parts.  Sexual feelings and sexual safety are a basic human right, for all humans.  The first step towards helping our autistic children lead whole, happy, and healthy lives in general is to end the silence and embarrassment over this topic.


Cringe…. and I have one going on twelve so I know I can’t hide much longer… But I do believe he is right about the 5yr plan. What has kept me pushing is “do I want to have to deal with that when they are teenagers and bigger than I am”. And it helps me to keep going.

I got a really good piece of advice from one of my nurses when my youngest was born “don’t allow anything you cannot live with forever or are not willing to break”… I think that applies even moreso to someone with a child with autism.

Soooooooo…. not looking forward to the teen years. Tweens are already starting so it’s coming.

— added by farmwifetwo on Sunday, May 1, 2011 at 10:01 am

I just had another thought. When my son was small – the eldest – he was very touchy. He is still very anti-touch (we can’t touch him) but I had to break the “touchy” part. I got comments, looks, implications of being cold to my kid… BUT… it had to be broken.

Took me forever to get the school onside. But with Ont PPM 140 in his IEP, “keeping hands to self” on the list these last 3yrs, a couple of weeks ago his teacher told me… “I heard from others that he’s a toucher, I haven’t seen it this year”…

Sometimes, you have to give the appearance of being cruel to be kind. BUT, it is necessary in the long term. My youngest is much more snuggly and is 9+… I am weaning my hugs and kisses… and it is very hard since his bro was never snuggly… but it has to be done. Ironically, unless he’s very comfortable with you, he is not a toucher. So that helps.

— added by farmwifetwo on Sunday, May 1, 2011 at 10:06 am

I wonder if the need to address this with autistic kids will help us, as a society, be more honest and straightforward about sexuality with all our kids.

— added by Katharine on Monday, May 2, 2011 at 9:22 am

There may be nothing written in the West on girls with autism and menstruation, but check out this 1998 issue of the Autism Network of India newsletter, with an article by a mother on her experiences teaching her adolescent autistic daughter about menstruation:

But all around the world, we do need periodic updated information on these topics.

You have raised the issue of autistic persons being sexually abused. There is also the other issue, of men (and maybe women) with autism who may “do” a socially inappropriate or unacceptable behavior, and be accused of rape or sexual misconduct.

— added by S on Monday, May 2, 2011 at 7:35 pm

As a person with autism, I had a fairly normal, accepted, part-of-life attitude taught about my sexuality. It needed guidance, yes, but who among the young doesn’t need guidance? Here are some suggestions:

-My mother and I had very accepting and frank discussions about periods, sex and feelings. She prepared for this because she did not have a good discussion herself.
-One thing I think is different for people on the spectrum is that they have either more intense feelings, or they feel as intense as they do the first time. Teach them that these feelings are normal, and OK. They are part of the human experience.
-“Good Touch/Bad Touch” is a simple way to start telling what is appropriate behavior when they are young. If they come to you with a “bad touch” story, BELIEVE THEM.
-Girls need not be embarrassed about having periods.
-For the ones who do not like to be touched, tell them that touch is a normal part of being a person. Teach them that touching is OK. I was once stiff when receiving hugs, but I eventually broke it (or got it broken).

Obviously, I am from the higher end of the spectrum. Go with appropriate levels toward your own child.

— added by Cambria Jenkins on Sunday, January 20, 2013 at 10:45 pm

an incredibly igorant article intent on shaming the audience it fails to reach.

— added by Nate on Monday, January 6, 2014 at 2:15 am

[…] è la traduzione dell’articolo: Autism and Sexuality: The Elephant in the Room., dal sito di Susan Senator, scrittrice e attivista americana madre di tre figli dei quali uno […]

— added by Autismo e sessualità: Un elefante in una stanza. | Autòs on Thursday, January 30, 2014 at 2:48 pm

Most of this sounds like what kids with autism need to know about sex is “don’t do it” and that is just not realistic, however comforting that might be to the caregiver.

— added by Bryant on Tuesday, February 11, 2014 at 12:41 pm

Oh.. that is not at all what I thought I was conveying. If you have a resource or specific advice that can help move this conversation forward, please don’t hesitate to comment again. Thanks!

— added by Susan Senator on Tuesday, February 11, 2014 at 1:19 pm

Sexuality is not inherent to what it means to be human. About 1% of the human population, and 10% of Autistic people, is asexual, meaning we don’t experience sexual attraction. Asexual people are as human as anyone else.

— added by stimmycat on Tuesday, September 23, 2014 at 8:32 am

good point. thank you.

— added by Susan Senator on Tuesday, September 23, 2014 at 8:51 am