autism, puberty and respect

Honestly, our kids should just get a pass on the whole puberty thing.

– a fellow autism mom

I want to write about the intersection of autism and puberty.

I want to tell you that I’m struggling. With how to talk to Brooke about all of it – not just about what is happening to her body, but why. And more importantly, how it’s going to feel for her, from the inside out.

(I don’t know how it will feel for her. I don’t know if she will experience the process differently than I did, or if it will be largely the same. My guess is that it will be different. Most things are.)

I will make the most educated guesses I can as I guide her. I will take all of the information that I’ve gathered over all of these years of watching, studying, analyzing. I will extrapolate out to the very last degree to which I am able.

I will find ways to deliver the information that she needs. I’ve tried talking. I’ve tried books. Neither was the answer. So I will offer up characters she knows, in the format of stories with which she is familiar.

Brooke loves to read her old potty training books. The formula in those books makes sense to her. It’s familiar, comfortable, accessible. So I am working on writing a story for her in which Dora the Explorer explains puberty in the same format that she describes the transition from diapers to the potty.

I thought it would be easier than it is. But as I write, I find myself stumbling across land mines – phrasing that is more likely to produce anxiety than ease, words that are far more conceptual than concrete. So I’m studying books like this one and this one, searching for clues, guidance, ways to avoid missteps. Brooke deserves nothing less than everything I can do.

I know that many of you reading this are parents of kids who face different challenges, and many of those kids are younger than mine. I know that many of you look to our story to see to what to expect as you move further down the road. Some of you have asked me to talk here about puberty, to stand by my banner of No Secrets, No Shame and to share the details of the process. To offer a guide of sorts.

As much as I want to help, I can’t.

Some time ago, Brooke’s older sister, Katie and I came to an agreement about what I would write about her here. If I don’t have the chance to ask her permission first, I am to trust my gut about what would embarrass her and what wouldn’t and, obviously, not write anything that I don’t think she would want me to share. My gut answer comes from one question … “If it were me, and I were twelve, would I want my mom telling this story to everyone I know?” The answer is, most often, no.

Brooke’s autism does not negate her right to me asking the exact same question of myself every time I sit down to write about her. My desire to talk about my challenges, my fears, my own insecurities about the process, cannot ever trump her right to privacy. Helping to guide others cannot come at the cost of her dignity.

If she chooses someday to talk about any or all of it, so be it, but she’s not in a position to make an informed decision yet. So it’s up to me to ask the question, “If it were me, and I were ten, would I want my mom telling this story to everyone I know?”

The answer, my friends, is no.

19 thoughts on “autism, puberty and respect

  1. Thank you, Jess. For your bravery, sensitivity and most of all, for keeping Brooke’s wellbeing always as your guiding light!

  2. Procrastinating on a plan to begin the process of explaining all of this to my 9 year old daughter. I have both of those books already but when I read them and think how this is going to sound to her and how to further explain it, I get a bit anxious. It needs to happen soon. She has discovered masturbation and well, we definitely need some guidelines. Ugh.

  3. Very well said! It’s a question everyone should ask themselves when writing about others. Would this person be embarrassed or hurt about me writing about them this way, and if so, do they deserve to feel that way? I hold to that rule even when the person isn’t easily identifiable. I think when Brooke’s older, she will definitely thank you for being so empathic with her! You’re awesome.

  4. Good choice, mama! My daughter is 15 and we are bounding through puberty the best we know how. I share a lot of her story, but that is where I draw the line. I’m happy to talk to people privately about the issue as they head that way, but I refuse to share that type of info publicly as her dignity is my greatest concern. Puberty has definitely been a big challenge, but we have tried to tackle it like we do everything else on our journey, with grace, humor, & as much chocolate as necessary!

  5. No,No,No…don’t do it, for some day she will read this and she needs to be able to trust her Mama, always. As usual you make the right decision once again.
    Love you,
    Dad

  6. If every parent showed half the respect to their children that you do to yours, the world would be a better, happier, more comfortable place.

  7. Our daughters are the same age and I completely agree with your decision. It’s been a challenging process so far but as usual her questions are just wonderful. When I started the first conversation about how her body will change, my daughter asked “Will I change into a boy?” She thought it might be interesting to experience things like her brother for at least a while.

  8. BUT maybe your could write about it, if there is such a demand, while leaving your girls out of it. I will contact you directly about a wonderful woman in our neighborhood who runs a non-profit sex ed program for special needs kids, and who goes into schools. She may have some resources for you to share.

  9. Our boy has high functioning autism, so his understanding of things is easier, and the process has been not uncomfortable. He is less easily embarrassed than our NT kids were, and sometimes it’s even pretty funny (though he could sometimes use a few more boundaries to be appropriate…) as he is easily amused!

    Some friends with kids with more involved autism has to deal with chronic masterbation issues with their kids in puberty, and had to create private spaces at school and times where they could indulge themselves, so the kids would not do it in more public settings at school. There can be some serious challenges with that!

  10. I am going to write a post for you about all the things that happened with me and what I wish I would have known before all that began.

    I’ll be back when I get it done to let you know it’s ready. I have so much more to say that a comment box just isn’t gonna do.

  11. Maybe, just maybe, someday you can write a book about this topic to help other asd families. Brooke doesn’t have to be character in it…..dreading this with my grandbaby, Isabella.

  12. The “good” part (as mom of an almost 13 year old boy) is that if there’s one thing our kids DO know how to do, it’s to let you know what they are and are not ready to hear. Just as our kids may or may not be ready to potty train when other kids potty train, just as they may or may not be ready to [insert any developmental milestone you’d like here] when other kids hit said developmental milestone, they may or may not be ready to take in information about puberty. My son is not. Thank god his body is as quirky and unique as he himself is, because there is literally no way for me to force feed him this information right now; it makes him angry, sad, and scared all at once. So I’m trying to respect that as much as I possibly can, while letting him know that if things start happening to his body or his emotions that he can’t quite understand, he should always feel free to come to me or his dad. That’s all I can do. That and, like you, keep the details to myself…no matter how cute, sweet, or funny a story they might make. To me, that’s the hardest part! 😉

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