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The Thinking Person's Guide to Autism · 9,287 like this
June 15, 2011 at 11:11am ·
  • A personal, awkward, and important question for women with autism and parents of post-adolescent girls with autism: What are your menstruation strategies? How can we help pubescent girls with autism (and those girls' parents) best manage the discomfort and mess of a period? -SR
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    • Quek Kai Chuan and Marcia Mendes Zagarodny like this.
      • Brandy Loughran Mello great question! curious to see the replies. my friend and i were discussing this very thing a couple of weeks ago (she has a daughter who is pre-pubescent. this is an area i am thankful to have a boy!) I was wondering if any parents choose to do like a Depo shot to prevent them from having a period or only a few a year???
        June 15, 2011 at 11:22am
      • Joanna Jaeger ‎Trudy Marsh Grable at Parents Helping Parents is the person I would ask on this one. She's AMAZING and a wealth of information!
        June 15, 2011 at 11:25am
      • The Thinking Person's Guide to Autism I know some parents put their daughters on birth control pills for the side effects - shorter and more predictable periods. But the mothers I've talked to are also interested in practical advice, especially for girls with intense autism and/or those who are non-verbal. -SR
        June 15, 2011 at 11:25am · 1
      • Corina Lynn Becker personally, I stock up on painkillers, and find really comfortable feminine products. Also, I purposely buy some loose-fitting clothing, especially dresses, to wear. I try to avoid waistbands as much as possible. I also learned to have plenty of toilet paper on hand (flushing a couple of times to avoid clogging the toilet), and learning how to get blood stains out of my clothes.
        June 15, 2011 at 11:27am · 3
      • Kassiane Alexandra S. ‎*sigh* If I had a dollar for every time a stranger asked me this question I'd be a rich woman (richer if I got an extra $5 every time they didn't understand why it wasn't really the question you ask a stranger).
        Repeat after me: tampons. Pads are disgusting feeling.
        June 15, 2011 at 11:30am · 2
      • Niamh Francis I was told about it as young as 9 years of age, so I had three years to adjust to the facts. I'd been told what happens and what I'm supposed to do about it, and the supplies were all there ready for me. So when it happened, I was not shocked at all and just followed the instructions previously given to me.
        June 15, 2011 at 11:33am · 2
      • Corina Lynn Becker Also, I learned to carry emergency pads and tampons in my purse.
        June 15, 2011 at 11:34am · 1
      • Corina Lynn Becker I know that my mom made sure to explain to me what was happening. She had a book "What's Happening to my Body for girls" I think it was. It had diagrams, and as I noticed things, I looked it up in the book
        June 15, 2011 at 11:36am
      • Emma Apple
        My daughter is high functioning enough that it could be a difficult thing for her to deal with emotionally (honestly, I'm 27 and it still gives me a shock every time I get my period) and pain wise, but I don't feel like it will be a major i...ssue... she is only 6 though, so I guess it's a hurdle we'll jump when we get there and we haven't really dealt with it as an imminent reality yet. Right now, I'm just dreading her losing teeth, THAT is going to be traumatic for everyone. I would not consider birth control as the side affects can be pretty severe and sometimes the hormonal balance never recovers (speaking from personal experience there).See More
        June 15, 2011 at 11:36am
      • The Thinking Person's Guide to Autism Thanks for the advice, everyone. Really appreciated! -SR
        June 15, 2011 at 11:38am
      • Corina Lynn Becker ‎- knowing what to do if you don't have products with you is useful; can use toilet paper or kleenex in a pinch
        - getting in the habit of keeping a period journal, to learn one's cycle and when a period is due, your mood and how heavy cramps/flow is, and especially if you miss your period
        June 15, 2011 at 11:43am
      • Corina Lynn Becker ‎(actually, there's an app, iPeriod that is really good for keeping track of menstrual cycles)
        June 15, 2011 at 11:46am
      • Emma Apple
        ‎@Corina, that's an important lesson I learned too, carry extra's! I don't have them often (read: hormonal disorder (PCOS) triggered by birth control pills) but I ALWAYS have a pad in my handbag. Also a book, I was just telling my mum recen...tly (when discussing the kids' great grandmothers upcoming heart surgery) that I have to discuss things with her in a very matter of fact way, as little emotional language or imagery as possible, otherwise it will trigger anxiety and all sorts of coping stuff (not sure if you call that stimming or not?) when she can't express/understand/process her feelings easily. She's a very literal thinker so I think giving pure fact and as much factual/biological/scientific type information as she wants will be the way we do it, that way she'll feel like she understands what's going on and it may help minimize anxiety. Theoretically.See More
        June 15, 2011 at 11:46am
      • Niamh Francis
        BTW a big problem for me was that I was not taught about how it could be difficult to manage, i.e. that it did not necessarily occur every month regularly, or that it would be unmanageably heavy. I never had problems with regularity but I d...id have major issues at first as it was way to heavy and I had to run to the bathroom several times a day at school and still leaked embarrassingly in between toilet trips. And worst of all, my mother (bizarrely, as she had had similar issues when she was young) refused to believe me when I said it was so heavy. Eventually I got really weak one day and was close to fainting because of it, and she had to take me to the doctor to get me on the pill. Pill fixed it and I've not had an issue since.

        So I'd recommend making it known that things may go crazy like that, and to make yourself available to talk to if it feels like it's all going wrong.        See More
        June 15, 2011 at 11:47am
      • Corina Lynn Becker makes sense, there are times when I need that as well, when it's just confusing and all I really want to know is what's going on. Once I know the facts, I can cope.
        also, something I learned at first aid training, pads are really good in emergencies when there's a deep cut and a lot of blood and you don't have any bandages
        June 15, 2011 at 11:51am · 2
      • Corina Lynn Becker ‎@Niamh yeah, that would make things tough. I understand going on the pill for issues like that. I just can't imagine giving a young girl Depo or birth control pills just to put off the issue for a while. Yes, it's an icky topic for some, but it's a fact of life
        June 15, 2011 at 11:59am · 1
      • Immanuel Brändemo
        Niamhs comment made me think: Isn't there a risk that autistic people carry on with health issues for too long, because they're unaware of what is "normal" suffering? I had that issue with my periods. I had heard that pain and fatigue was n...ormal, so I assumed that since I wasn't ACTUALLY fainting, just feeling faint, I was just being squeamish.

        I think that is something to be aware of, particularly if you live in a society where talking about periods and genitalia is taboo. And at least here in Sweden there is a terrible attitude among some doctors, midwives, school nurses etc who believe that all pain and suffering related to periods are "natural" - which can make it even worse for autists with period problems.        See More
        June 15, 2011 at 12:29pm · 1
      • Kassiane Alexandra S.
        Oh man, my mom told me about it when I was...like...9. And started making me carry stuff for it when I was about 12 (and showing no signs of puberty whatsoever). So 7 years later when it started, i was overprepared in some ways underprepare...d in others (PLEASE explain that it feels gross and sticky. She'll find out soon enough).

        I *do* wish I'd been told how much pain is cramps, how much is not-I have endometriosis and had been told that cramping is 'part of being a woman'. Cramping until you pass out apparently isn't! Who knew???        See More
        June 15, 2011 at 12:40pm · 3
      • Lori Hogenkamp Magnesium, B6, Wild Yam (natural progesterone). Estrogen-sensitivity, so pill -etc, BIG no-no, like you would not believe. :). I actually found a menstrual cup online and love it (probably not for teens), but tampons/pads really gross me out.
        June 15, 2011 at 2:02pm
      • Lori Hogenkamp Oh and Traditional Medicinals makes an awesome PMS tea that my daugher and I swear by, best thing, beside pain pills like Corrina suggested, which I think too were helpful. But that tea, which tastes great, always really helps with my cramps.
        June 15, 2011 at 2:05pm
      • The Thinking Person's Guide to Autism It's Liz Ditz here -- what a great question for an OB/GYN who has girls with autism in her practice -- I'll ask Dr. Jen Gunter if she has any thoughts. Or maybe a Nurse Practitioner? Hmmmn.
        June 15, 2011 at 6:04pm · 1
      • Immanuel Brändemo Kassiane: Exactly my point!

        Oh, and a tip for those with sensory issues: Using reusable fabric pads can be tricky because you have to remember to clean them etc - but if you have sensitive skin/tissue, or if you really feel sick from your own period's smell, it might be worth trying.
        June 15, 2011 at 11:18pm
      • Kassiane Alexandra S. ‎*gag* Oh god the very idea of reusable pads makes me puke in my mouth a little. You have to deal with the blood TWICE *and* it can stick to you and ewwww.
        June 16, 2011 at 12:16am
      • Charlene Wilsey I am soo glad that someone else was wondering the same thing. Thanks for all the info
        June 16, 2011 at 7:27am
      • The Thinking Person's Guide to Autism The Autism Women's Network also has a discussion going on - please join their community so you can see the additional advice: http://autismwomensnetwork.org/forum/periods -SR
        June 16, 2011 at 8:40am · 1
      • Emma Apple pads and tampons gross me out equally but I find pads easier to deal wih (non intrusive) so use the lesser of 2 grosses.
        June 16, 2011 at 9:27am
      • Maggie Howell It wasn't easy! Thank goodness my girl has Aspie's; I talked to her, but she had read the boxes and told me it was handled! Smartypants!
        June 16, 2011 at 10:51am
      • Karin Evans i and raising an 11 yr old who has asper and is mentaly slow iq less than 66 help she is spotting and freeks out every month cant remember the month before
        June 17, 2011 at 2:25pm
      • LisaMaree Grace App I am following the head in a bucket of sand method myself *facepalm* Grace is almost 12...
        June 21, 2011 at 12:55pm