Silence = Death
December 6th, 2007In the 1980s, many activists, especially in the gay community, used the slogan, “Silence = Death” to succinctly explain the result of failing to talk about many of the taboo subjects around sexuality. People were dying of AIDS. Nobody wanted to talk about things like homosexual sex, condoms, multiple partners, or the like. It disgusted some, while for others it embarrassed. Yet is disgust and embarrassment enough to allow people to continue dying? Sadly, this is still the predominate problem in fighting against AIDS in many areas of the world – lack of sexual education and openness about how AIDS is prevented, and a taboo against talking about having AIDS, continues to kill thousands of people every day.
The same thing exists when it comes to autistic people and sex. It is disgusting and embarrassing for many to think of us having sex or expressing our sexuality. So it doesn’t get talked about.
Another autistic person once told me that sex education for autistic people is typically little more than teaching an autistic person to masturbate in private. It seems that’s the extent of sexual activity we’re allowed.
It’s often assumed that we can be sheltered from sex, avoiding the need to educate us at all – put us in an institution that is segregated by gender, and everything will be A-OK, right? Prisons, in the US and elsewhere, show that things aren’t quite as simple as this. Prison rape affects thousands of US inmates each year, mostly inmates in gender-segregated environments. Over 6500 filings of sexual abuse in prison were made to the US government in a recent year. What’s terrifying about that number is that sexual abuse, especially male-on-male (the reason this is significant is that most prisoners in the US are male and are in exclusively male housing units), is drastically underreported, because of shame and embarrassment, both of the victim and of others. If prisons, designed for the surveillance and control of inmates, cannot prevent rape, how can an institution?
This also ignores some other realities. Most sexual abuse is committed by people known to the victim. Often times, it’s a parent, an aunt or uncle, a brother or sister, a teacher, a preacher, a child care worker, a camp supervisor, an institutional staff person, a roommate, etc. Even in institutions, inmates have contact with others.
In addition, autistic people are particularly vulnerable to sexual abuse. Our statements are often dismissed by police (we’re “mentally ill” and often reporting an abuse committed by a “respected” member of society who often has “witnesses” to support his side of the story), if we’re even allowed to report them. The same types of problems any sexual abuse survivor faces in reporting crimes, such as fear, intimidation, shame, humiliation, and worry about the future affect autistic people, too. Also significant, someone who has trouble communicating (especially if they are not capable of using language unassisted) is at a significant disadvantage when it comes to reporting abuse, especially abuse by the primary caregiver.
Retaliation is a huge issue, too. Many of us are dependent on a handful of people who aren’t easily replaceable. We may have the choice of having the help we need to eat or ending the sexual abuse. Many chose to eat.
But, abuse aside, we are sexual creatures, just like the rest of the human race. We fantasize and want the perfect partner, physically and otherwise. We express ourselves sexually, both alone and with others. I suspect – I’m sorry if this embarrasses people, but I think it is true – that most autistics want to have sex (yes, there are exceptions!). For children, they will very likely want to have sex as they get older. This is true even of non-speaking autistic children and children who have low IQs or functioning levels according to whatever test is used today to measure those things. As much as this scares parents, it is the reality – autistic kids will grow up to be autistic adults, and will have a sexual dimension to that adulthood.
I believe autistic people need sexual education starting at a very young age, and we need more of it than most neurotypicals. We are in a prime victim group – with some studies saying as much as 90% of developmentally disabled children will be sexually abused by age 18. While sadly the number of abused neurotypicals is not trivial (it’s actually quite high), this is a much higher number. If you see an autistic adult, it’s pretty much a sure thing that they faced some sort of abuse (you will rarely be wrong if you make this assumption) and that it is very likely the abuse was sexual That’s reality. It sucks, but it is reality.
Sexual education is the first step in ending the silence. It needs to be more than “don’t play with yourself in public.” Certainly it does need to be age appropriate, starting with discussing good and bad touch. But as autistic people become adults, we have the right to learn about our bodies and how we might experience sex with others. It also includes things like, “How do you show your attraction for someone else?” as autistic people don’t necessarily pick those things up the same way neurotypicals do. I’ve seen many autistic people inappropriately approach someone they were attracted to, and very much scare the approached person by their advance – when the problem was one of simply not knowing what is and isn’t appropriate rather than a disregard for others’ boundaries. Any sexual education of autistic people shouldn’t ignore the desire to express sexuality with others, either (both in a sense of understanding that everyone has the right to say “no” and how to approach others – and the practical issues of being sexual with others, such as learning how to access birth control or prevent STDs). We need to be seen as capable of giving and receiving sexual attention as adults. Too often, when it comes to sexuality, adult autistics are seen as children.
There is a lot of other talking that needs to happen to end the problem of abuse of the vulnerable. We need to talk about how sex is abused by people, and that will necessitate changes in service delivery. Nobody should have to have sex to have friends, a place to live, or food. Yet autistic people are having sex they don’t want simply to get these things – they have no other way of getting them. There needs to be serious acknowledgment that sexual abuse in institutions is pervasive and not a problem a “good” institution can avoid, that the problem is systemic. We need to have serious talks about how we protect those who are unable to report abuse, and ensure that staff, caregivers, and others living with them are accountable for wrongs committed, even when the victim lacks language. We need to talk about all areas of sexual education, from preventing abuse of autistics to helping autistics and their partners have wonderful sex (if it is okay for neurotypical couples to see sex counselors or have materials that teach how to better please their partner, it should be for us too).
Will this make many uncomfortable? Yes. But Silence = Death.
In general, education is a good thing. We in Western society are uncomfortable talking about many things that should be talked about more, sex and death being two of the more prominent.
And I can’t imagine leaving autistics out of the conversation. I can’t imagine why they should be left out, or why anyone should want to leave them out. As you point out, exploring sexuality is an important part of socialization.
I’m asexual, and I guess that means I’m one of the lucky ones. I have a physical sex drive but no desire to express it with anybody else. The whole “masturbate in private” thing, though? Very important. Especially for a kid who doesn’t think of sex as any more significant than eating or using the bathroom… just another bodily function. I guess some of the social things we Aspies miss are the social taboos, and this can lead to great embarrassment if not taught explicitly.
You’re right, though. That’s not the only thing that needs to be taught. We need to be taught how to tell somebody we like them; how to behave on a date; where the boundaries are; how to find out whether somebody is interested in sex… All those little things that, if we don’t know them, could get us accused of sexual harassment or worse.
It is good to see someone blog about autistics and sexuality. Autistics should not be ashamed of their very human desire to explore sexuality, (and should not be ashamed if they choose to be asexual either). Better sex education is useful for anyone living in the real world. Not just for autistics, but for the benefit of non-autistics as well, there should be more information out there about autism and sexuality that, like you said, isn’t just about doing it in private, alone. Some autistics might even be able to grasp more mature/advanced concepts at a younger age too. Also with sensory integration issues and such more people out there might be able to have more happier experiences than if they were uneducated.
I assume you know about Dave Hingsburger who does a lot of work stopping abuse toward, and promoting sexuality education for, people with disabilities? davehingsburger.blogspot.com … I read his blog daily.
We’re struggling a bit in this area but making our way through it. Our older son was taught things at certain ages (he’s only almost 8 now) so with Patrick we’re trying to decide exactly what is age appropriate and when for him (not the same as brother but when?). I have to say it never occured to me not to teach him about sex. The more information he has the safer he’ll be.
A 90% sexual abuse rate? I think I’d want some good data on that, if there are any, which is doubtful. They can’t get the figures right for the general population, mostly because the professionals like to throw around inflated statistics based on shonky research. It would be high I would think but I’d hate like hell for any autistic to be automatically treated as a victim of sexual abuse on top of being treated automatically as every other [insert wrong thing here].
The 90% comes from D. Sobsey. That said, it is for *all* developmental disabilities, not just Autism. I’ve seen a bunch of other research on this (yes, actual peer-reviewed stuff), with estimates from about 40% up to 90%. The vast majority have numbers higher than 50%.
So, I don’t think it’s wrong to say that most of us have been sexually abused. There’s data to back that up. As for not treating people like individuals, that happens already and not labelling the problem of sexual abuse won’t help us in any way, just as not listing diagnostic traits of autism won’t help us in any way, despite there not being a single diagnostic trait of autism that 100% of autistics have.
The research may not be “good” research in your eyes, but it’s better than “no” research and “gut feelings” that the abuse rate isn’t what the research says. Dispute research with research.
I bet the 90% doesn’t include males, and not aspies living “ordinary” lives.
It includes males, although I don’t know what the definition of “developmental disability” is, and it very well may not include some people now being identified as autistic.
I’m puzzled at the need for this number to be less by many.
I think the need is for the number to be accurate, and provable. That way if someone quotes you and gets called on it, they can point to the research and say, “there it is.”
If the number is high but less than 90%, then it can be used as ammunition by those who care to do so. “See – they’ll lie to try to make a point.”
I think even male aspies can become targets of sexual abuse, probably perpetrated by another male, which could be prevented if they are educated .
Autistics definitely need a sex education that is not merely a “plumbing” course. Too, it is not enough to just say “don’t do it”, either. Many of us will never be able to have sex without some guidance on how to go about it. It is presumed that those with developmental disabilities and even physical disabilities are supposed to be asexual. I think NT’s take for granted their ability to get sex and don’t realize just how much a loss it is to be unable to make relationships. I am apparently asexual, but still wonder what I am missing out on. By the way, when i was in an institution, I never had any sexual experiences, either voluntary or forced, but this is probably not typical. At any rate, it’s too late for me to bother with sex now that I am pushing 50, but the younger autistics could still benefit from learning about sex.
I think the problem with obtaining accurate abuse statistics is not so much “shonky research” but underreporting.
right on my friend. desexualizing disabled people is another form of our oppression.
This is a very good post and something I have thought a lot about in regards to educating my daughter who is autistic. I agree that it is a topic that is often ignored. We have opened up discussions with our daughter. The other night she talked about having a crush on someone! I have yet to find any good advice on how to really teach her in this area. We are trying.
Joel, Rachel
Thanks for the replies but as I’m coming to realise more and more, good data and accurate information is good for autistics as it is for anyone else as Michelle Dawson says over and over. You can’t lie in a good cause to my way of thinking.
It appears that the statistics are inflated through the use of two things – the ‘once in a lifetime’ statistic and the broadening of the definition of sexual abuse to include ’sexual remarks’ among other things.
Just how dangerous this style of research is to autistics is exemplified by Aston claiming that 40% of asperger adult males are violent based again on the once in a lifetime statistic and including ’shoving’ in the definition.
That sexual abuse needs to be dealt with or that a sex education is the best form of protection – if they’re in a position to do anything about it is beyond dispute. But leave the shock statistics out of it. Social policy made on the basis of such has never ever been good for anyone.
Alyric, not every “extreme” statistic is bad data, inaccurate information, or “shock” statistics.
Unfortunately, MANY studies show this level of abuse among autistics. And ignoring that will NOT make things better – in fact, it makes it worse.
There’s a preponderance of evidence that *MOST* developmentally disabled people are abused sexually (and not just non-abusive “sexual remarks”). Failure to recognize that is a great wrong IMHO.
A few quick Googles will get you plenty of citations on these numbers, so you can read them yourself.
Also, the “once in a lifetime” thing *IS* valid as long as it is stated. Many bad things are talked about this way – chance of being killed by a drunk driver, chance of getting cancer, etc. Would you not agree that even once is too much for sexual abuse?
80% of statistics are made up on the spot, beware of statistics that sound neat, but beware even more of statistics that don’t.
Take a look at the way that the statistic of 75% of autistics being retarded got accepted in the literature, it simply got repeated from paper to paper and so became nothing more than the scientific equivalent of an urban legend.
This 90% is like all crime statistics, unreliable, because of problems in collection and definition, never mind the heavy political and social overtones.
It is funny how this supposedly more scientific community of ours balks at the curebies stats but produces equally unsound stuff at the drop of a hat when it suits.
Joel, thanks for opening up this topic. I haven’t even begun to think about it with respect to my 4 yr old son/ I had some significant concerns about his being a target for abuse as he is nonverbal and, frankly, a physically beautiful child. It scares me and I know I need to educate myself so I can educate him and protect him until the day he is able to protect himself.
Larry, what is the number that is correct? If someone has a good study on developmental disabilities and abuse, let me know. I know I’ve read many, as I talked about above. Some had better and worse methodologies, but they all seemed like legitimate research from people without huge agendas.
This isn’t like the mental retardation “75%” number. The difference here is that several groups, working independently, have attempted to answer this question. They *ALL* came up with very high numbers (most came up with numbers over 50%), whereas the 75% didn’t have that luxury of multiple independent groups.
I’m all for scientific accuracy. I just fear – as I’ve written before – that in the quest for scientific perfection, we’re actually doing harm. Scientific perfection should be our goal, but we should also be pragmatic and use the best, albeit slightly imperfect, evidence we have when interacting with the world until the better evidence come around. Science has few black and white areas, and tons of differing shades of gray. And, NO, that doesn’t mean I’m unscientific or anti-science, or a supporter of quacks. I simply recognize that few scientific questions are easy to answer or are possible to research perfectly. So I try to look at the available evidence, evaluate it, and use my sceintific reasoning to decide what the next step is – sometimes with imperfect (but the best available) evidence as the initial foundation. To reject that foundation in favor for “gut feeling” is far worse than my use of imperfect evidence.
Sometimes I don’t know what you or anyone else is on about, but that’s cool I inhabit my own parallel universe anyway and yes I have commented before.
The paper I would refer you to is. http://www.willamette.edu/dept/comm/reprint/edelson/
Just so you do not think I am lacking in academic or scientific rigour (mortice notwithstanding for the time is out of joint)
Well as Hamlet when he was not a cigar said “the rest is silence” and of course Ludwig who was not a composer or a crazy designer King said “Whereof one cannot speak, thereof one must be silent”
I’m bigwise mega into the therof wherewithals and heretofores of that which is a big noise (Winnetka notwithstanding)
So I shall bruit it about
I’m not talking about your studies of what you call “developmental disability” and abuse but autism and retardation, but I suspect that your studies that you may quote are full of the same emotionally and anecdotally biased bull. We need to be better than that and you are not (lets not argue whether I am I am just reminding you)
Just do not believe things because it suits you to.
Larry
And to put it another way, just to sort out the complications of my last post …
The problem as I see it in statistics is the usual one, that of definition of your categories.
You need to define what is sexual abuse, but of course the taboos come in and it is not easy to do so
You can’t even define “sexual” let alone “abuse” and I am back in Wittgensteins lala land.
It is just a convenient ploy to argue that category x “suffers” more of category Y
It is no different from the other argument that supposes that category P perpetrates more of category Q
You know what I mean, more street crimes are perpetrated by blacks. The Jews are economic parasites, whatever.
You are probably putting NT’s into that same visceral “other” category and constructing a notion of victimhood.
Don’t mean it ain’t true, it just means you haven’t thought it through to the fullest extent.
Larry, I am not arguing about levels of suffering. I also acknowledged that many suffer abuse, including NTs.
Finally, many cases of sexual abuse against developmentally disabled people are committed by other developmentally disabled people (often in institutions, group homes, etc). I am one of the people who is very quick to condemn his own people when they commit wrongs. Autistics are not perfect, and we commit just as many wrongs as NTs. I know that.
I may not have thought it through to the “fullest extent” but I suspect I’ve thought this through far more than you think.
I stand by my writing. Autistics (as part of the developmentally disabled community) are more at risk of abuse. I’m sorry that people don’t like me to say that, but it’s true. It’s also very likely that the *majority* of us have been sexually abused – I know that’s true of the group of developmentally disabled people as a whole, and from talking to plenty of autistics, abuse of autistics is the rule, not the exception. Sexual abuse is sadly very common there, too.
Are we victims? No, not all of us are. Are most of us? Yes, sadly. Are we more at risk? Certainly. Should risk analysis be used to determine how to approach risk? Yep. Risk analysis tells us that we should worry about either very costly (in any definition of cost – not just economic) risk or frequently occurring risk. Sexual abuse of autistic people is both.
I have seen all manner of statistical assertions sometimes contradictory, such as the notion that perhaps 75% of the prison population are neuro diverse/ dyslexic, take your pick and then the opposite that dyslexia, autism, adhd or whatever does not correlate neatly with crime.
I am not saying that sexual abuse does not exist, that it is not more prevalent than reported or anything like that, simply that you cannot make categoric unsupported assertions because you lay the whole argument open to the same sort of ridicule that an Autism Diva puts on the autism epidemic stats.
I have seen so much on the autism hub and around that fails by exactly the same logic as the curebies arguments fail, yet somehow it is “better” and “truer” if “we” are saying something, because “we” inherently believe ourselves to have the moral high ground just as any other “In group” arguing against there mutual “out group” do.
I do think we have to be quite graphic and literal about what we call sexual abuse however so there can be no excuse for misunderstanding and that is something that is taboo still.
Apart from that I think you are talking about developmentally “disabled” when you are using disabled in that sence to mean “impaired” which is a whole other semantic minefield, but the confusion does us social modellers no good, because if you read Tom Shakespeare, he has got us by the metaphorical balls, when we muddle up our usages and colloquially fall into bad habits and infer that the “disability” is located in the individual which is what is implied by the sence in which you talk of “developmentally disabled” that assumption follows automatically from that particular construction.
You see there are so many problems here.
Larry
I don’t understand why above commenters put so much emphasis on whether the abuse prevalence is 90% or less. Isn’t it clear that, first, the prevalence is alarmingly high and, second, even one case of abuse is one too many?
It was reported that in a particular institution for disabled children in my country which was filmed by BBC (“Bulgaria’s abandoned children”), no one of the older girls was a virgin.
Why the numbers and statistics are important to me, is that if we wish to claim the moral highground we should not do as our opponents do and bamboozle with numbers.
Now I am trying to seperate the two parts of what Joel is writing about, because I agree as I think I have stated already that sexual abuse of intellectually disadvantaged people is something that needs to be talked about openly, but it is not helped by emotionally charged numbers, which are used in precisely the same was as the curebies talk of an autism epidemic.
If we should talk openly about something, we should talk accuratly about the prevalence too, and if we do not know, we should say that we do not know.
The not knowing is a part of the scandal in itself.
Larry, those are numbers from actual research, not Joel trying to get an emotional reaction out of people.
If you have better numbers, lay them out.
Research be damned I thought it was clear that research is not God and that the numbers need validation now in that research it is not there.
Who is this God research? where is your learning?
The Geiers are researchers/
Where has your critical faculty gone, you believe it because it is in a journal, well I say Bollox, lets see the actuarials on this, come on put up.
Larry, I don’t have the details handy – I’m in the middle of an ice storm in Oklahoma – it’s a pretty large natural disaster, and may have made the news where you are.
I *will* post a bunch of these citations when I get back from the trip and have access to the research library I use. Of course then I’ll be expecting you to actually read the research citations I provide before you criticize them…right now it seems like you are criticizing on “gut instinct” not evidence, being you don’t even know the citations.
Yes I have seen about the ice storm, they look set to become more common in the future, one of those things, that like New Orleans has been waiting to happen, but nobody has properly prepared for.
Society has become more dependant upon electricity over the last 20 years, I can remember when shops could stay open during power cuts with tilley lamps. Nowadays it only takes a phone line to go down and they can’t process your debit card.
I have to go with Joel on this….estimates I’ve seen range from roughly 40% up to 90%, with some of the higher numbers coming from institutional samples. Even more concerning are a few studies on length of abuse; it seems that for roughly half of developmentally disabled adults who have been sexually abused, the abuse is a chronic affair.
At any rate, sexual abuse (and especially the one-time rape event) is chronically under-reported. Given that 1 out of 6 women in this country is sexually assaulted (conservatively speaking), *every* child should be taught awareness.
As an end to my ramble….I’d provide citations too, but I live in Oklahoma City and am writing this via wifi by candlelight–seriously. It’s cooold in my house and my computer’s battery is dying!
I think you do have a really good point, Joel. I think alot of people perfer to see Autistics as childlike. Once they stop behaving like a perpetual well-natured adorable 10 year old, then everything goes to hell.
I think there should be sexual education for people who are Autistic, exactly for the reasons above. For example, I went to a shyness group once. I mentioned I had Asperger’s Syndrome, and this guy who also had it nearly attacked me with excitement. Like, it did scare me, I didn’t go back to the group. I’m sure it was an issue of him not knowing boundries, and if he had gotten the education to know you don’t just jump on someone you like, like a love-crazed Anime chibi, you have to get to know them first. Like have conversation.
I do have a problem with something in your article. The presumption that Auties are abused. My mom heard from my neighbor, that she was concerned because she heard that fat people have been abused. I’m glad I wasn’t there, cause really, I would’ve told her it’s none of her damn buisness. Of course, she could’ve easily decided that response meant there was abuse.
See the assumption someone is abused, puts the person who might be the abused person, in a terrible situation. Since it’s an emotional issue, it’s easy for people to place their own reality on the situation, rather than listen to the person who’s supossedly been victimized.
It’s like, how would you feel if someone said, you’d have to leave the only family you’ve known because of assumed abuse?
Unfortunetly, there have been stories of fat children removed from their home, due to it being assumed that they were overfed. I wonder if someone will ever do a fallow-up on their life. Show how their relationship with food was totally messed up, because it was associated with them being taken away from their home.
I could see this same situation happen with someone who’s Autistic, and someone assumed they were being abused and they were taken away. Yes, there are real situations of abuse, and the children should be saved. There is a fine-line however, between jumping the gun, and verifying that the abuse really did happen.
I’m sure everyone would say, “Get that kid the hell out of there!” if they heard they were abused. That’s why the presumption of abuse is such a problem. It makes everyone go into emotional mode, rather than think first and say, ok what is best for the child. Let alone, did this abuse really happen.
I watched alot of Judging Amy, where the subplot, was about her mom dealing with situations of child abuse. It really does give you insight into the issues around dealing with such things.
[...] this silence is ultimately more harmful. It doesn’t encourage dialogue and discussion; it prefers denial; [...]
This is a really important conversation to be having, even though it is a difficult one. Some of us really do have more difficulty in, for instance, talking to our peers, especially when we are young. But we need to be able to get our points across on this topic. Winifred Kempton has done some great educational work, and Isabelle Henault’s book is quite good, for those who want to read more…
[...] Silence = Death [...]