Wednesday, August 14, 2013

Beyond "The Talk"

When it came to puberty, my parents did what many parents in the seventies did: they gave me a book about puberty written especially for girls. It was a slim cranberry hardback with an ambiguous title like "Everything is Changing."

I was a voracious reader, so I would curl up in my beanbag and scour the pages for clues to the mysterious changes that were on the horizon. I think I had many of the same fears, anxieties and curiosities about puberty as my friends had. Certainly my body went through the same changes that other girls experienced. However, I think there are some areas where girls on the spectrum would benefit from additional information or guidance. That's what I'm going to focus on in this post.

Many of the issues I want to touch on also apply to boys. I'm specifically addressing the issue of puberty in girls because I was once a girl and I raised a daughter. Girls are my wheelhouse. If you're looking for information about boys, I hope you can adapt some of the ideas below but, honestly, boys are a mystery to me.

In addition to talking to your autistic daughter about all of the things parents normally cover when talking about puberty, consider discussing the following when you feel the timing and circumstances are right:

1. Hygiene

  • Talk about where body odor comes from and why, be sure to mention that sometimes we can't detect our own body odor but others can
  • Emphasize the importance of daily showers, tooth brushing, mouthwash, deodorant and changes of clothes in preventing body odor

You may have to repeat hygiene instructions or reminders many times. You may need to come up with a visual or text schedule to hang in the bathroom. There are still days when I need a reminder to do basic self-care tasks. This isn't "one and done" instruction for many autistic individuals.

If you notice that the stick of deodorant is lasting far too long or there aren't enough pairs of underwear showing up in the laundry to account for daily changes, you may need to go on a fact finding mission. If you ask "why aren't you wearing deodorant?" there's a good chance you'll get the tried and true aspie standard: "I don't know."

Maybe the deodorant smells too strongly or feels sticky. Maybe she has two pairs of underwear that are comfortable and ten that aren't. A better approach then "why aren't you ____?" is "how did you like that deodorant we picked out?" Maybe she hates it and doesn't know how to tell you. This stuff can be embarrassing when it's so new and confusing.


2. Social skills (use your judgment to decide on age appropriateness of the following)

  • Talk about appropriate/inappropriate ways that boys and girls express interest in each other. Give specific age appropriate verbal and nonverbal examples.
  • Talk about how to say no and what to do if a boy doesn't take "no" seriously.
  • Explain what flirting is. Give age appropriate examples of verbal and nonverbal flirting cues that boys and girls use.
  • Explain the concept of personal space/boundaries, including how a person signals that they don't want another person to come closer or to touch them.
  • Talk about types of touch, specifically the differences between how friends touch each other (on the arm, on the shoulder, quick platonic hugs) and how boyfriends/girlfriends touch each other (holding hands, on the face, longer hugs).

If you're already working on social skills with your daughter, boy/girl interaction can be presented as new age appropriate skills to be learned like any others. Be specific. Use lots of examples, perhaps drawing on movies, TV shows or some time spent people watching at the mall food court. The wider variety of examples you give her, the better. Remember, autism makes it hard to generalize from one situation to another.

Don't assume that autistic girls will extrapolate from middle school social skills to high school skills the way typical girls often do. Continue to update your daughter's knowledge bank as she gets older. How boys and girls express interest in each other is appropriate for a young teen. An older teen needs specific knowledge about what a romantic advance looks like and how to verbally/nonverbally signal acceptance or rejection in an appropriate way. She also needs to know when she's giving off "I'm interested" signals, especially if they're unintentional.

This may not seem like rocket science to a typical female. Most women instinctively understand the verbal and nonverbal language of flirting, but for someone who struggles with reading body language, it can be mind boggling. I'm 44, fairly intelligent, in a long-term relationship . . . and I still have only the vaguest idea of what flirting looks like in action.

3. Sensory issues

  • Include your preteen or teen in choices of new hygiene products like deodorant, pads or tampons. Sensitivity to smell can make perfumed items (yes, even tampons) hard to tolerate.
  • Tactile sensitivities may impact your daughter's choices and comfort level with clothing, especially a newly introduced bra. Don't be surprised if she seems to cling to her more comfortable "childish" clothing. Help her find age-appropriate clothing that's comfortable.
  • Be alert to the role hypo- or hyposensitivity to pain can play in menstruation. I used to get cramps so bad that my legs would feel numb and often that was the complaint I voiced. I'm sure my "numb legs" made little sense to the school nurse as a symptom of menstruation.

Depending on your daughter's interests, personality and sensory sensitivities, she may be interested in make-up, hairstyles, clothing and other things popular with girls her age, or she may not. She might become interested in those things at a later age than her peers. She might want to try some of them out, but only if she can do while not aggravating her sensory sensitivities.

Honestly, there's no typical autistic girl when it comes to personal grooming preferences. You might have a daughter who can barely be bothered to run a brush through her hair or you might have a daughter with a special interest in eyeliner that threatens to break the bank.

4. Hormones!

I've saved this one for last because it's a bit scary. The hormonal changes of puberty and adolescence are hard on typical girls. For girls on the spectrum, they can seriously throw things out whack. Before puberty, I'd never had a full-on meltdown. Hormones turned me into a shouting, door-slamming, crying mess. And the worst part was, most of the time I had no idea why. It all felt completely irrational.

Be alert to changes in your daughter as she goes through puberty. This may be a time when other conditions like anxiety or mood disorders arise. You may see an increase in stimming or other self-comforting behavior. It may be when her need for alone time skyrockets or you feel like she's backsliding in social skills, emotional regulation or other areas that seemed stable.

It may also be anticlimactic. She may encounter the same issues as typical girls and you'll get to suffer through them like all the other moms.

If you see your daughter struggling with new issues, talk to her about them. She may be aware of an issue but not know how to approach it, she may be fine with handling it the way she is or the issue may not have even made it onto her radar yet. I'll assume you have strategies that work in this kind of situation and leave the details up to you.

5. Questions?

Not yours, your daughter's. Keep the lines of communication open and emphasize that your daughter can ask you about anything, no matter how silly, strange, uncomfortable or obvious it might seem. If she has difficulty raising questions verbally--and this can be true at times even of girls who are usually verbal--give her the option to share questions in writing and to have your answers in writing as well. That way she can come back as needed and reread them.

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The tips here are by no means all-inclusive. They're simply the things that come to mind when I think about what would have been helpful for me as I matured.

If you're looking for more information about puberty, sexuality, and adolescent hygiene, Autism Help has extensive information, beginning with the basics of teaching about body parts and the difference between public/private activities. There are a nice set of visual aids you can download and use in talking with your child as well.

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Cynthia Kim blogs at musingsofanaspie.com

13 comments:

  1. Hi, I'm C7, and I'm a 29-yo autistic guy. Not sure if I'm representative, but since you stated that boys are a mystery, thought I'd at least offer these and hope they're useful.

    1) Yeah, non-self-detectable body odor is extremely frustrating. I've been fortunate/privileged to have comfortable clothes, though.
    -Deodorants: yeah, and they can gum up my armpit hair the next day in the shower. I've tried shaving my pits and found that runny sweat wasn't much help.

    2) Uh, patriarchal norms mean that boy-response is important. No disagreement there. That said, it may be possible that your daughter/son isn't heteronormative. (Hopefully they're comfortable enough with you to let you know!) As such, it may be worth discussing what sort of flirting, etc is acceptable/worthwhile with everyone.

    -One thing boys should definitely get: (This is safe in general, but specially applies to cases where you aren't sure) Assume that girl/woman has something better to do than deal with you. Get out of her way and leave her be.

    3) Strongly agree that having the person who is wearing the gear involved in its selection is important. Perhaps (timing for this may not be feasible) working with likely new clothes over a summer or other less-stressful period could be useful? In general, allowing early warning, time to adapt to changes, and limiting the amount of changes at once are all good things.

    (But you probably knew that already. ;-) )

    4) I'd had serious overload problems pre-puberty but they were generally the result of active bullying. That said, I'd imagine all of these concspts could reasonably apply to teenage boys as well.

    5) Concur wholeheartedly.

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    1. Thank you for sharing the "boy POV" and for mentioning how to approach the possibility that a preteen/teen is non-heteronormative. I tried to avoid being biased toward boy/girl relationships but I see by some of the wording that I dropped the ball there. My bad.

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  2. My GID counselor says statistics estimate up to 60 times as many transgendered people in autistic community as in neurotypical community. But nothing ever mentions that possibility in any puberty information have seen. None of the puberty picture stories I had explained this what self was/am. It was so horrific it nearly killed me. Internal wrongness is so much worse than things going wrong outside my body.

    Have counselor's-words to explain now. But. Those words are hard to understand. My AAC devices have no pictures for these words. Being not-a-girl, things being wrong with body, and all the more complicated things. Still have no picture-buttons or picture-stories to explain any of it.

    Being dependent for understanding from picture-stories made it so easy to feel like self just did not exist, was not possible. Not existing is not a comfortable state.

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    1. Thank you for sharing this Ari. It's important for parents of Autistic individuals know. I wonder if perhaps you would be willing to contribute something to this blog on the topic to make parents and others aware of the need for both providing information and for AAC devices to be more inclusive?

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    2. Do not understand your question, sorry.

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  3. I have to point out, regarding undergarments: Sports bras are far, far more comfy to me than regular bras. I haaated regular bras with a passion as a kid, and refused to wear bras at all until my mother got me a sports bra for gym. And then I refused to wear any kind of bra other than sports bras for several years. So, for kids with tactile issues, there's nothing wrong with wearing sports bras instead of fancy regular bras. My mother would fight with me over it because... I don't know. I think because I'm pretty flat-chested and so looked like a boy when I wore a sports bra, but meh. Comfort >>>>> fashion for me.

    Also: proper-fitting bras are far more comfortable than ill-fitting ones, and kids change bra sizes a lot (not just growing - I was a C up at sixteen and a decade later am an A cup because I slimmed down as finished puberty). So a regular bra fitting is definitely worth it. Once I realized I'm actually four inches smaller in the band and a cup size smaller, "normal" bras were bearable enough that I can wear them... provided I don't get the lacy monstrosities my mother would foist on me.

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  4. I have to point out, regarding undergarments: Sports bras are far, far more comfy to me than regular bras. I haaated regular bras with a passion as a kid, and refused to wear bras at all until my mother got me a sports bra for gym. And then I refused to wear any kind of bra other than sports bras for several years. So, for kids with tactile issues, there's nothing wrong with wearing sports bras instead of fancy regular bras. My mother would fight with me over it because... I don't know. I think because I'm pretty flat-chested and so looked like a boy when I wore a sports bra, but meh. Comfort >>>>> fashion for me.

    Also: proper-fitting bras are far more comfortable than ill-fitting ones, and kids change bra sizes a lot (not just growing - I was a C up at sixteen and a decade later am an A cup because I slimmed down as finished puberty). So a regular bra fitting is definitely worth it. Once I realized I'm actually four inches smaller in the band and a cup size smaller, "normal" bras were bearable enough that I can wear them... provided I don't get the lacy monstrosities my mother would foist on me.

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  5. Oh my god I still don't understand what flirting is.

    And yes to a properly fitting bra. It is like night vs. day.

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  6. I would like to echo the need for including some instruction on same sex attraction. It seems like something that a child would need to figure out by themselves because most gay people have done this without support from their parents, but that doesn't mean it's supposed to be that way! I still struggle far more with boundaries in same sex encounters than I do in opposite sex encounters (and even those are still difficult sometimes). Mostly with setting my own boundaries! My parents taught me that it was important not to be compliant in sexual matters and to assert my own wishes, but only with boys and only in sex. Outside of sex with men, I'm still about as assertive as a wet paper towel.

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  7. I kind of hate that my first comment is Like This because I am loving this blog. . .

    but in addition to the problems of assuming heterosexuality and cis-sexuality, the relationship part of this advice also assumes sexuality in the first place.

    I was a (not then recognized as such) autistic teen and a (not then recognized as such) aromantic and asexual one. Everything I was ever formally or informally taught about sex and romantic relationships assumed that I and everybody else was going to want them, and some day have them. Non-interest was seen as a temporary state that one would "grow out of."

    37 now. I think it's safe to say I'm past the "growing out of" stage. I've never had a crush, never dated, and I'm fine with that. What isn't fine were all the years of having been "taught" that everyone, including eventually me, is supposed to have thoughts and feelings and behaviors that actually not everyone, including me has. In addition to explaining how a healthy relationship works, it's really important to validate that not having these feelings or romantic relationships can also be healthy.

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  8. You know, now that I think of it, yes it would be good to include all those things in a "talk". But I don't think I'm talking from a privileged point of view if I say that Cynthia's talk is already so much better than no talk at all, or a talk that glosses over all the things that allistic people simply figure out on a social level, or a talk that says autistic people are not supposed to have sexual feelings at all. So ok, maybe it's not perfect yet, but we're all working on it, and it's getting better and better every day. YAY!

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  9. This is great. I wish someone would have realized I needed to be explicitly told this information when I was going through puberty. I had to have my peers make fun of me for being stinky for me to get it :-/
    You probably just helped a bunch of kids by posting this. Thank you.

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