in the open

It’s a metaphor

*

I need to come back to this.

I don’t want to, but I feel like I have to.

For two reasons.

One is that I fear I may have left you with the wrong message – that I don’t think that we should be discussing issues surrounding autism and sexuality publicly, which is not the case. The other is that, quite frankly, I was surprised to find that my very visceral reaction to Mrs Cutler’s article did not  jive with that of some of my autistic friends. And when that happens, I am compelled to investigate where the differences are and why.

So let’s start with the first reason.

By no means do I wish to imply that we should not be talking about autism and sexuality or the inherent issues therein. I am not, by any stretch, suggesting that there are not some very serious challenges for autistic people in navigating the sexual landscape, both in person and online, nor would I ever deny that the autistic population gets into some very real trouble when they inadvertently run afoul of the law.

I think that we need to have hard conversations about these topics no matter how uncomfortable they may be. As parents, I believe we have a responsibility to speak openly and without embarrassment nor shame, about how we can best arm our children to handle the unique challenges they will face in this realm, ultimately setting the stage for them to do the same.

However — and I want to be very, very clear about this — I strongly believe that those conversations should not and need not come at the excruciatingly high and wildly inaccurate cost of adding “sexual predator” to the public perception of autistic people.

That’s why I wrote the post that I did regarding Mrs Cutler’s article and why I remain deeply troubled by the way in which she irresponsibly and wrongly conflated autism and pedophilia. I can’t even type that sentence without cocking my head at its absurdity.

But, that said, I am not looking to shut down reasonable and measured conversation about autism and sexual development, or the need for explicit teaching about the complicated intersection of sexual curiosity, desire, impulse, expectation and morality (for ALL children) nor am I against delving more deeply into the reasons that some of our folks might get themselves into trouble — so that we can help to avoid it in the future. It’s that last part of that (run-on) sentence that leads me to the second reason that I’m revisiting this topic.

Michael John Carley posted a link to the article on his Facebook page, citing the controversy surrounding it and asking others their opinions. While he had his objections to the way in which the article was written, I was surprised to find his reaction far more balanced than my own.

In a private conversation that he’s been kind enough to allow me to share with you, he said the following.

… But I have to admit that the notion of some folks wanting kids to teach them about sex, and not the grown-ups they’ve been conditioned not to trust … may have some truth, and truth that works for us.

It humanizes things, and if explored might lessen the number of times our folks get railroaded into sex offender status.

Earlier in the day. my friend John Robison had sent me his Psychology Today column, Autism and Porn: A Problem No One Talks About, written in response to Mrs Cutler’s post.  In that column, he said the following:

Very few autistic people will ever have trouble with sex crimes.  Very few NT people get involved in sex crime either, for that matter.  But those that do are highly visible and the autistic ones I have met needed help much more than punishment.  Ignoring that reality is like ignoring the teachers who locked autistic people in basements at school when I was a kid.

He went on to say,

If it’s recognition of autistic vulnerability that gets these people help instead of hard prison time, I am all for it. I have no wish to paint autistic people as potential sex offenders— we are not.  But I do feel our differences can place us at risk in some situations and this is one of them.

I hope that you will read the article in its entirety. It’s well worth your time.  John asked me for my thoughts on it and this is what I said:

I have to say, it’s very typical of you and all that I so appreciate about your voice: it is reasoned, well thought out and, while based on your extensive experience, NOT presented as universal, nor some ‘troubling trend’ as in Mrs Cutler’s ill-conceived article. You say right up front what I believe is the most important part of this …

“Autistic people ARE NOT by nature sexual predators of any sort. Multiple studies have shown autistic people are likely to be victims far more often that we are perpetrators of crime in general and sex crime in particular. Abuse of people with disabilities is a well-known and tragically common situation. Let’s be absolutely clear on that.”

And you go on to say, “it’s important to remember that most people— with or without autism—will never have an issue with porn. We are only discussing possible autism-related factors for those that do.”

This matters. A lot. I have no problem with an honest discussion of causality in these rare cases, nor with talking about how we can help our kids to avoid pitfalls to which they might well be more vulnerable than their typically developing peers. Indeed, I think it’s vital that we have those discussions, particularly around sexuality and that we figure out how to arm our kids for survival in a world that, as you point out, is very different from the one in which we grew up.

I appreciate your insight, your ongoing efforts to broadly understand and advocate for the needs and challenges of the autism community and your rational analysis of difficult subjects.

Woof!

Clearly, as poorly as Mrs Cutler’s article may have been written, and as reckless and damaging as her sweeping conclusions were, she obviously raised at the very least tangential issues that are of real concern to people who spend an awful lot of their time deeply engaged in autistic advocacy. So here we are.

And the hard truth is that as the mother of a beautiful autistic daughter, I wake up in a cold sweat more nights than I’d like to admit worrying about the fact that my girl is getting older, that puberty is around the corner, that navigating the minefield of social media is tough enough for my ‘typical’ kid, and that I have no earthly idea how the hell I’ll be able to help her make her way through it when I’m not always even sure that my words register or, when they do, if they hold any real meaning for her.

The reality is that I have no real clue how to attack something so conceptual, so vague, so riddled with conditions and qualifications and situationally dependent answers. I honestly can’t yet fathom how I will go about even teaching her the basics of puberty and development no less how I will then manage to combine that mess with how to handle the interpersonal stuff that’s so damned hard for her without the hormonal component. For the love of God, we’re still trying to figure out how to help her figure out the difference between the words “Why” and “How.”

I don’t have a kid with a facility for language. Words are unreliable, meandering sentences even more so. This is where that gets hairier than ever. Because we HAVE to address this somehow. We HAVE to find developmentally appropriate ways to teach our kids as much as they can take in about how to listen to their bodies, respect themselves and others and, above all, to keep themselves safe.

We have to talk about the changing and stretching and growing of their bodies, about budding breasts and bras and periods and sanitary pads and how we keep ourselves clean. We’ve got to talk about cracking voices, things that get hairy, things that get smelly, unexpected erections, wet dreams, raging hormones that sneak up unannounced and wreak havoc on our kids. We have to talk about where and when it’s okay to touch ourselves and others and where and when it’s not.

These conversations are awkward enough under the best of circumstances; and seemingly impossible in some of ours. But here’s the thing — these things are going to happen whether our kids are currently picking out what to wear to a school dance or choosing which Elmo’s World they want to watch. Physical development doesn’t pause just because minds develop differently.

The changes are going to happen.

And no matter how great our squeamishness about the topics may be, and no matter that they may be compounded by our fear of how to approach them with kids who may not appear top have the facility to understand them, we owe it to them to figure it out. To keep trying. To presume competence. To give them the chance to understand. To talk to them, in whatever form ‘talking’ may take.

About what parts of their bodies are private and what needs to be sacred.

About circles of familiarity –  the difference between doctors and family members, teachers and therapists. About why it’s never, ever okay when someone asks them to keep a secret.

About sensory needs and safe (and private) ways to satisfy them versus situations that can put them in harm’s way.

About trust. Where it’s appropriate and where it’s not.

About where and of whom they can ask questions when they have them, so that the Internet doesn’t become a defacto parent.

About BEING the place where no topic is off-limits, where there is no shame nor judgement, just support and information.

About how to say and respect “No.”

This matters, guys. Particularly for our kids. And I really believe that in order to keep them safe, we have to stop prizing compliance above all else. We have to start encouraging our kids to stand up for themselves (with or without words) when something doesn’t feel right. With nonverbal kids, this means showing them that we’re listening, watching, respecting them and trusting them to know their bodies and themselves – reacting and helping when they communicate discomfort rather than always redirecting, ignoring, and ultimately forcing compliance in the name of ‘good behavior.’

We’ve got to stop inadvertently setting up our children to be perfect victims.

It’s hard to know where to start, especially with a kid for whom langauge can’t be trusted. But this isn’t optional. So for Brooke, we’ll start where she is.

We’ll draw pictures of bodies – showing zones of privacy, explaining what stays covered in public, at the doctor, at home.

We’ll create visuals to explain the hierarchies of relationships – mom and dad, doctors, teachers, friends, the postman.

We’ll make maps – showing places where certain things are okay (at home, in the privacy of your own room)and where they’re not (at school).

We bought books. The American Girl series The Care and Keeping of You and Taking Care of Myself: A Hygiene, Puberty and Personal Curriculum for Young People with Autism . Brooke has no interest in them yet. They aren’t Dora the Explorer or Blue’s Clues. but they’re there, in her room, visible. We’ll continue to introduce them. And in the meantime, we’ll work on presenting their content in other ways that might make it accessible to her.

We’ll keep trying. Just like we do with everything else. And we’ll talk about it here, you and me. And stumble through it together, as we do.

Because with all she got wrong, Mrs Cutler was right about one thing …

Wouldn’t today be a good time, she asked, —in our nothing-stays-hidden culture—to bring the confusion out in the open? Not that we’ll see a ready answer, but at least we could begin a straightforward, sympathetic response before something tragic happens and we wish we’d paid attention.

Amen.

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21 thoughts on “in the open

  1. “We’ll keep trying. Just like we do with everything else. And we’ll talk about it here, you and me. And stumble through it together, as we do.”

    Love you,
    Mom

  2. You’ve got my mind spinning in a hundred directions this morning with this and I want to find a way to put it all together more coherently, but for now, I just really need to add one extra thing I feel strongly about and that is the idea of secrets. An idea I drill into my kids heads, no adult should be asking you to keep a secret from me. Ever. If they do you tell me immediately. It is very common for teachers, etc. to tell the kids not to tell the parents about a secret project they are working on for parents as a holiday surprise or something. Its an unfortunate way kids are taught adults asking them to keep secrets is ok. The distinction of good and bad secrets is too complex. I’m not doing the idea justice right now, but I just wanted to put it out there.

    • this is such an important topic. i said it here .. “About circles of familiarity – the difference between doctors and family members, teachers and therapists. About why it’s never, ever okay when someone asks them to keep a secret.”

      but it can’t possibly be emphasized enough. thank you.

  3. So overwhelming..all of it. Cymbie is 5. Her language is echolalic or prompted response. I don’t even know where to begin.

    • barb, at 5 i wouldn’t have either. nor would i have imagined that brooke’s language would be where it is now. you have time. and you get the benefit of watching people like me who are 5 years out – you get to see where we screw up and avoid the same pitfalls! so there’s that. :)

  4. I have similar worries, and my son is just 7. But with his language barriers, it is going to take a while to communicate this and for me to be sure he understands. We have already started conversations, and we presume competence…and fill in the blanks where we see them. I am very much with you on this one. I appreciate you putting this topic “out there.”

  5. your response to cutler was totally appropriate and in no way implied that it’s not okay to discuss autism and sexuality. i thought your outrage was perfectly reasonable…i felt it too. she needs to be criticized for her bizarre and inaccurate statements. and doing so doesn’t imply that the whole topic is off the table. hopefully the issue of autism and sexuality can be discussed in a constructive, beneficial way, and seperated from the nonsense cutler recently put out into the world. because that’s basically what she did: she added a new dangerous stereotype to the already huge pile that folks on the spectrum have to contend with.

    • thanks, m. just wanted to make sure that i wasn’t shutting down what i believe to be a vital conversation. but yes … just yes. still makes me shudder.

  6. I am sure you have already thought of this, but in case you haven’t I will say it. What about creating your own social stories using Dora. This is Dora, these are Dora’s Breast. Dora is getting older… etc. Its a bit unconventional but it would keep Brook’s attention more than the other books. I use jay’s obsessions to get all major points across to him. He is 12 going on 13 and way into puberty. He knows a lot already but when we are discussing new subject matter I will use The Doctor from Doctor Who as an example. It makes him laugh now thinking about The Doctor having an erection and he will say, “Really mom that is just not right and an image I didn’t need to see in my mind’s eye” but it gets the conversation started and breaks the ice and lets me into his world a place that as he gets older is sometimes harder to get into. (hormones and all) Anyway I think it is great that you wrote this and so very very important. I find that the more comfortable I am the more comfortable he is talking about it. And timing is everything too! For us most conversations happen at night, when his light is off (guess it is easier to talk that way) and I am putting him to sleep. Okay sorry to have gone and on and on.

  7. Comments from Diary’s Facebook page, including some suggested resources from readers —

    Comment:

    It’s about talking to them before they choose their sexual interests on their own. Same with any other child, just a little more important. As well as talking to them about their body so they get the information they need.

    Comment:

    We bought “Taking Care of Me” a few months ago, and I really appreciate the way the content is presented.

    Comment:

    Well done. I also feared the minefield of puberty with my beautiful autistic daughter. As she now is 20yrs old, entering her Junior year in college, working part time, and driving her own car, I have come to accept that her journey is guided by her. I only hold the lantern along the way, so she can see all the choices on how to get where she needs to be. The minefield still exists but somehow we manage through it in her way.

    Comment:

    Thanks Jess for approaching this topic again. I read John’s article earlier this week as well and was impressed by it.and did make me think.
    Does anyone have any good recommendations for books for boys?

    Comment:

    Yes, yes, and yes to these powerfully important words…. “And I really believe that in order to keep them safe, we have to stop prizing compliance above all else. We have to start encouraging our kids to stand up for themselves (with or without words) when something doesn’t feel right. With nonverbal kids, this means showing them that we’re listening, watching, respecting them and trusting them to know their bodies and themselves – reacting and helping when they communicate discomfort rather than always redirecting, ignoring, and ultimately forcing compliance in the name of ‘good behavior.’ We’ve got to stop inadvertently setting up our children to be perfect victims.”

    Thank you, Jess, for your thoughtful, insightful post expressing your heart & thoughts after sorting through myriad feedback, looking for areas of truth in the layers. You (once again) model authentic “dialogue,” showing what happens when ego & self-interest are set aside, keeping your eye “on the ball,” the big picture and ultimate purpose for Brooke and countless others like her. Bless you for that gift…again. :)

    Comment:

    We have the book taking care of me for our daughter. I have also used the Circles program by James Canfield in my work as a case manager. I also love almost anything by Dave Hingsburger.

    Comment:

    See how you are helping? For someone like me (totally ignorant) of the challenges you all live every day…… this subject never crossed my mind but now I can only imagine the tightrope you walk, making appropriate choices for your children. One thing I’m beginning to understand is that there is no norm, even from day to day. God bless.

    Comment:

    Have any of you come across similarly good books for boys? I have two NT sons. I read a lot as a kid, but only vaguely remember A Child is Born or something of that ilk. My dad was an OB GYN, so I’m sure I had more info and graphics from his office and the journals that came though the home. I’d be interested in books for boys (or boys and girls) that would explain care, keeping, and emotional and physiologic changes.

    Comment:

    I read his article a couple of days ago and thought it was.fantastic! We will “presume competence” in all things, but especially in this, because we owe it to our kiddos. Applying any kind of label to our kids is dangerous to their development, but allowing the world to place labels on them is even worse. Props Jess, once again, and thank you a million times :-)

    Comment:

    I will have to sit and read the originating article later when I am not pressed for time but I wanted to say thanks Jess for broaching this nearly taboo topic. Ultimately, puberty et all is going to happen with us or without us. It would be morally irresponsible for us to send our children out into the world unprepared, Autistic or NT or otherwise just because we may prefer to bury our heads in the sand pretending that it won’t happen if we ignore it. As uncomfortable as it is for us to discuss, it is matter of fact and serious.

    Comment:

    I just got “The Body Book for Boys” by Rebeca Paley for my NT son. I haven’t read all of it, but it goes into the care and keeping of boys. It is a great place to start the conversation.

    Comment:

    I’m a fan of “What’s Happening to Me?” by Peter Mayle, and also his “Where Did I Come From?” They’re clear and simple and well illustrated.
    http://www.amazon.com/gp/aw/d/0818403128/ref=aw_1st_sims_1?pi=SL500_SY115

    Comment:

    Well said!

  8. My daughter is 15 and let me just say, the puberty stuff, breasts, hair etc….that’s the easy part! Sure, there was a lot of anxiety when it became clear that we needed to let her know other changes were coming her way. But since it actually started, she is only as annoyed as the rest of us by the inconvenience.

    Her views on boys on the other hand are another story. Autism be damned, puberty waits for no one! So yes, even with social skills that are far behind their peers, our kids have the bodies and desires of adults and that’s where it gets tricky. The thing is, the rules that apply to kids of their developmental age need to be enforced to keep them safe. That means a 17 year-old with the social/cognitive skills of a 10 year-old does not get unsupervised internet time, just as a 10 year-old would not. Computers/tablets need to be in public parts of the home (NOT bedrooms) where screens are visible to parents even when we are just passing through, folding laundry, making dinner etc. It just keeps everyone honest. We MUST consider their developmental age to keep them safe while introducing the messy world of adult life.

  9. We are in the same boat with Isabella. At age seven, almost eight, she is already showing signs of of prepubescence. It is scary. I am going to look into that book you mentioned….thanks.

  10. Thank you for bringing this to the table. It needs to be discussed. My son is on the spectrum, and verbal, but his social and emotional skills are so far behind his body. It terrifies me, especially in light of all the news stories of autistics and violence. It’s a fearful road, but one that must be walked to get our children through safely.

  11. What you do and say here matters and affects children so much. You wrote about teaching children it is okay to say no after you attended the ASAN meeting in the spring, and I see the idea repeated here, “reacting and helping when they communicate discomfort rather than always redirecting, ignoring, and ultimately forcing compliance in the name of ‘good behavior.’ “. I just wanted you to know, after your post in the spring I had a long talk with my daughter’s team (she is three and nonverbal) and teachers. Her teachers are now going out of their way to recognize and respect when she demonstrates a “no” type of behavior. It is secured in her IEP. Not that she gets to run the classroom, but, thanks to you, it has been made clear to the adults in her life and consequently to her, that even at age three, she has the ability to advocate for herself, to make herself heard in some sense, even if it’s not verbally. She will carry that with her for the rest of her life – that spark of independence and self-determination – in large part because of you and the advice autistic adults at that meeting. I am forever grateful.

      • I’m glad you revisited this. I read Ms. Cutler’s article you linked to in your first post and John Robison’s article you referred to here. I think, we as the moms and quite frankly, women, react with our emotions. We need to visit the taboo subjects more often because they still exist in the world our kids will be living in on their own.

        My son is “only” eight years old and I am worrying about this from now. Thank you for linking to those books about puberty. I’m going to look into those books and look around as well.

  12. Thank you for giving voice to the worries in my head. It’s so reassuring to know I am not the only mom who lies awake at night wondering how in the world we will navigate the crooked path of a daughter growing up.

  13. I didn’t read all the replies so sorry if this copies any of them! My son is 15 and he was very interested in reading books about puberty. But I will emphasize that he wanted to read about the girls’ stuff too and we were ok with that. He has a younger sister and we just went with – it’s ok for both of you to be curious and interested in what happens when you hit puberty for boys and girls. It helped take a lot of stigma away from all of his interest. I think it really helped, too, because he ‘knows’ about it from both sides and nothing was a big secret.

  14. I haven’t read the comments posted here or on fb, but I wanted to let you know that I downloaded a great app (my daughter – 9 years old – is ipad/iphone crazy addicted) that is called Birdees (a sex ed app). I have an older NT daughter (16) who I simply answered questions when she asked them – and she certainly did ask them – so I kinda thought that my younger daughter would simply start asking them as well…
    When she didn’t, and then when she was diagnosed with Asperger’s, I started to realize that the questions might never come – or that they have been comming, but I haven’t been catching them. That’s when I found this app and I found it very helpful in bringing up the subjects and allowing her to navigate through without feeling forced. We sit together and we explore an ipad app that happens to also be teaching us something.

    For my son, who is 5 and has been dx’s with PDD-NOS (or in his case “Very mild Autism/Asperger’s without the social issues”) and who has a very hard time NOT touching himself or others (or anything for that matter) I have had to start intilling boundaries and the reminder that you cannot touch others without first asking their permission. I only started doing this recently as I saw his constant touching (before he was dx’s) as simple affection – and frankly I wanted to treasure it. And because he nursed for two years I thought that his tendency to want to touch breast was in correlation with that, then a good friend told her child not to touch her bum without permission – when he (who was a toddler) asked to do it, she said no. She explained that children, but especially boys, need to understand and respect personal boundaries from a young age. She herself had been sexually molested as a child and needed to make sure she was intilling in her children a knowledge of right and wrong touching from the start. I saw this as exemplary and started to use it with my kids – particularily my son.

    As you said, it’s about always having the information and the “rules of engagement” at hand so that you can openly and easily start the process of understanding and control from an early age.

    It isn’t a question of will they get this, should I bother? But a question of “do I care enough to make sure I give them the right tools in life, no matter how long it takes me to teach them?”

  15. I’ll add that as a personal choice for our family we do not “hide” nudity. We don’t flaunt it either – but should a child walk in on us when we are getting dressed or bathing we make a non-event out of it. I think a lot can be said about how people portray their bodies and their body images to children and how that shapes the way a child acts when they begin to be sexually mature.

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