Posted by: E (The Third Glance) | December 17, 2012

Autism and Women’s Health: A call to autistic women

I’m going to do something I wouldn’t normally do, in the hopes that someone else out there has experienced this and might have some advice. Group Sharing Time, here folks – autistic women, I need your advice, and unfortunately, I don’t know how else to ask it. So if you read this and are an autistic woman, please comment and share. If you aren’t, but you know an adult autistic woman, please pass it along if you think she might have any thoughts. With studies coming out about how autistic adults have worse access to health care, don’t get the help and care they need for any number of reasons, I think it’s important to have these discussions. One of my biggest issues with healthcare is that I’m terrified of the unknown. I need to know what I’m getting into, so I can write myself a social script. This is a HUGE barrier to getting medical help for me. Yes, I recognize it, but that doesn’t make the problem go away. Oh, and it’s really important for doctors to get some training on how to deal with autistic adults. In fact, Leah Jane (The Quixotic Autistic, also known as Nominatissima) wrote a great post about ways to make the gynecologist’s office less awful for us on the spectrum.

At this point, it’s going to get personal. If you don’t want to read about women’s health and birth control, stop now, you’re not missing anything profound (but don’t worry, it’s not graphic). But if you’re an autistic woman (or non-autistic woman) and have thoughts, that’d be great. Perhaps this page could become a resource for others… I did try to do some research on my own, but every single hit I could search through on google without getting totally frustrated when searching for any variant I could dream up of “autistic women and birth control” was “birth control causes autism” or something of the like. And most of it was stupid pseudoscience. There’s absolutely nothing searchable for autistic women trying to figure out of this is a solution that will work for them. So, fellow female* auties, aspies, and spectrumites, let’s fix that here.

If you’ve read my archive, you would know that I’m asexual. It’s not that want sex but am repulsed by it. I simply lack in any desire whatsoever. It’s not a part of the human condition that I experience, and that’s the best way to explain it. That’s part of who I am, and I’m quite happy with it. In fact, I’ve really come to a place where I’m very comfortable in my skin, my body, and my brain. I really like who I am, and I don’t particularly want to change it.

Unfortunately, I’ve been having some weird women’s health issues, and in order to fix them (mind, the doctor can’t tell me WHY or give any evidence for why the proposed solution might work for me in particular), they want to put me on birth control. This seems to be the band-aid that my student health center likes to put on anything related to women’s health: not working perfectly? Let’s put you on birth control. Working perfectly? Let’s put you on birth control. Sexually active? Put you on birth control. Asexual? That doesn’t exist, you just haven’t had sex yet. And to protect you from whatever might come of it when you do, let’s put you on birth control now as a precaution. I honestly don’t believe there is a single woman who goes to the clinic who they don’t try to put on birth control. And I take major issue with this. I do not want to be on birth control unless someone can prove to me that it is medically necessary, and give me a good reason to do so.

As I mentioned, never had sex in my life, don’t want to have sex in my life (though despite protesting this numerous times, they INSISTED on giving me a pregnancy test last week, which, of course, came back negative. What a waste of money and time.) I really don’t want to be on a daily pill and a slave to it – I have never been on daily medication that was long-term, and I don’t trust my executive functioning enough to remember it on a daily basis. I only remember my vitamins about 60% of the time, and I LIKE those (win for chewy adult vitamins), AND they’re in the cupboard right in front of my dishes, so that I have to move them out of the way in order to get to the cups/plates. I don’t want to be on a daily pill. My body doesn’t always do what I want it to do. The world is unpredictable. But I can count on my brain to function the way I expect it to. I’m terrified of the idea of messing with my brain’s chemistry and the signals it sends. If there’s something amiss, I agree, it would be good to fix it, but I don’t want to be putting a metaphorical band-aid on the problem, if the problem isn’t actually a paper cut, but rather, a broken finger. Band-aid won’t help there. It might stabilize the finger a little bit, but the underlying problem is still there.

And I’ve heard a number of horror stories about birth control side effects taking over people’s lives. I’ve heard about people for whom birth control has changed their body chemistry overnight and caused them to gain tons of weight. I’ve heard the opposite, where it caused them to lose tons of weight. I’ve heard about people for whom birth control caused major PMS and changed their personalities. People who went on it to help with awful cramps, and instead of making it better, just made it more frequent. I’ve also heard good things, too, don’t get me wrong. However, I have a history of having averse reactions to medications, and I’m afraid of the side-effects. Getting my period is already an utterly miserable experience for me, but on the lucky side of things, it only happens once every 1-2 months… I don’t need it to happen more often! I’m small and underweight (despite many efforts to change that), and my body literally can’t support it more often. My roommate is on birth control and every once in a while my body tries to synch to hers. It always goes badly. So really, I’m terrified of the unknown. I’m terrified of what might happen in my body and brain. And I want to know what others who share my neurology have experienced. And as I mentioned, google was utterly useless on that front.

What I’m most curious about, then, is how other autistic women deal with this sort of thing. Please, in the comments, share your experiences with women’s health, birth control (or lack thereof), and anything else. With your permission (please give it explicitly in your comment), I’m going to try to make up a page that pools together everyone’s experiences, and hopefully make it google-able. Have you been on the pill (or some other variant of birth control?) – why did you start? What were your experiences, good and bad? How did it affect your autistic traits and autistic self? (In particular, I’m worried about how my already overactive sensory system will respond to it.) And anything else, really, that you would share with other (young**) autistic women about this vitally important topic that gets glossed over so often.

Thank you!

EDITED TO ADD: I am not seeking medical advice, nor do I intend for this page and its comments section to become medical advice. However, fear of the unknown is a major thing, and this is simply an effort to remove some of that unknown. I am well aware that what I experience will be distinctly different from what others experienced, however there may be similar elements. I’m simply gathering information. Ok, disclaimer over.

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*I do not mean to exclude trans folks here – if you’re a trans autistic person who has had to deal with these sorts of things, I value your story and experience, and if you feel comfortable sharing advice, please do. I truly do not mean to exclude you when I say “female” – if there’s a better way I can phrase that, let me know too! I did use at one point, “female-bodied” – if that is better language, let me know, and I’ll change it in the post and use that going forward.

** I put young here, because I am pretty young (23) but really, anyone who is looking for this information, young or not.

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Responses

  1. I was on birth control pill for 17 years. There were no side effects that I could notice. I took it every single day in those 17 years and never forgot or skipped it. Of course, I was driven by an intense fear of an unwanted pregnancy and when you are that afraid of something, you are not likely to forget. The pill served its purpose perfectly. Going on it was very easy and then going off it 17 years later .was just as easy. I heard all these horror stories about the difficulty of going off the pill, but they proved to be completely wrong in my case.

    So in my specific case: no negative side effects, worked perfectly, provided me with the service I needed from it. I also want to say that I believe that the scary stories about the pill that proliferate online are, at least in part, the product of the anti-pill propaganda conducted by people who do not want women to control our reproduction. Everything I ever read online about going on / off the pill proved to be completely wrong in my case.

    • Thanks, Clarissa! That actually makes me feel a little better. And ironically, I am able to give my cat his medication on a daily basis out of fear of him getting very unhappy/sick if I don’t… maybe there’s hope for me? Except I have no motivation, and as I have learned, I’m very good at doing things when I’m motivated to, but if I’m not motivated, then the chance of it actually happening goes down drastically.

  2. I was a virginal youth in my teens (16?) when I went on the pill for skin troubles and menstrual irregularity. It really helped me. My skin cleared up and I enjoyed a break from the hormaonal ups and downs ovulation brings. Plus, it evened out my period–more timely and less painful.

    I stayed on the pill for ten years and took a break. I’d been on it a longtime and thought I’d give my body a rest. I had more fatigue without the pill and slowly some of my symptoms came back–but not as badly as in my teens.

    When I got married, I tried the depro-provera shot. Hated it! I gained weight and wept until the shot wore off. I returned to the pill until we decided to have a child (ten more years). For me, this was a positive experience since the pill seemed to stabilize my hormonal fluctuations which played havoc with my emotional regulation (I have trouble with emotional regulation anyway).

    I quit the pill since I am in my forties and the risks outweigh the benefits. Many people have different reactions, but mine were positive.

    • Thanks! I’m not really emotionally dis-regulated like some people report being, so I’m a little nervous that the pill will change that… I’ve had emotional reactions to drugs before, and believe me, I do NOT want to repeat those…

  3. I was on birth control (specifically birth control pills) for about 10 years to prevent pregnancy. It worked for what it was meant to do and made my periods super predictable, but the side effects were so bad that I had to seek a more permanent solution much sooner than I think most women do. The hormones completely threw off my (admittedly delicate) emotional balance, though I didn’t recognize that until I got off birth control. I gained weight and couldn’t lose it no matter what I did, which I could have lived with. The really problematic part was that I was an emotional wreck. I was moody in the extreme, had lots of meltdowns, and would get inexplicably sad or angry at the slightest provocation. I’m not sure if it had any impact on my sensory issues though I do know that during this time I was not very nice to my husband much of the time when he made romantic overtures, so perhaps it did.

    Also, when I finally went off it, I developed an ovarian cyst that landed me in the emergency room. Apparently something to do with the drastic hormonal change involved in going off the pill. Having said all of that, it was 20 years ago and I know that you can get low dose pills and various combinations of hormones now that weren’t available then.

    You don’t say what type of issues you’re having (other than irregularity which sounds connected to your weight) so I have no idea whether it would be worth trying birth control to manage them. Everyone reacts differently, of course, and YMMV. For years I’ve had issues with very irregular periods as well as some other menstrual wonkiness. After much investigation and finding no good cause, my doctor suggested going on the pill to smooth things out but it wouldn’t be worth it to me. I’d rather live with having a 42 day cycle one month and an 18 day cycle the next, etc.

    I hope this is helpful and not scary. My personal approach has been to rule out anything obvious (cancer, endometriosis, etc.) via testing and then live with the fact that my uterus, like the rest of me, isn’t quite normal. Also, sorry for writing a book here!

    You can use my comments (edited for brevity if you like) in a collective post, but please do so anonymously.

    • Thanks so much! I’m mostly worried that it’ll make me into an emotional wreck… I’ve always had *awful* cramps (like, for at least 36 hours each time, I’m barely able to function enough to get up off the floor and out of the fetal position), and so I’ve worried about that before, but its always been decided that it’s not worth it for me to go on the pill for that. I’m hoping they have it more “figured out” now in terms of hormonal regulation…

      (the problem is irregular bleeding – since I’m 23, they’re like “you’re 100% sure you’re not pregnant?” “well, it’s probably just hormonal. let’s put you on birth control”, and to me, that doesn’t quite add up.)

      • Yes, like I said I’ve had irregular bleeding on and off for about 15 years. Several different doctors haven’t been able to find a reasonable explanation for it. I’ve basically given up looking for an answer. I did have really bad cramps when I was younger (in high school, it would be so bad my legs would feel numb). I’ve found that as I’ve aged (I’m 43) that has gradually subsided and hasn’t been a problem for the last decade or so. Something to look forward to! 🙂

        Good luck with whatever you decide to do. It can be a confusing and frustrating issue to navigate.

  4. I have been put on the pill at various times in my life to help with ovarian cysts and endometriosis, every time I have had horrible side effects. I would become bedridden and now after having babies, I can say it felt like morning sickness all day long. They made me highly emotional and I had meltdowns often. However, during that time they were testing me for everything and probing me often trying to figure out what was wrong. It went on for several years, that could have contributed to my emotional and sensory sensitives along with the hormones.

    I am highly sensitive to medications though. I have been put on the lowest forms and still had problems. However, with this last “issue” which the doctor cannot find anything wrong except I have some strange laceration and have been bleeding for almost two years, I am on Medroxyprogesterone, it is not really helping my issue, but I have not had any side effects so far, I am still trying it.

    I think it is different for every person. If it would help you it may be worth it to try, many people are able to be on it without any issues.

    • Thanks 🙂 Yeah, I think it’s going to be “find the right one…” hopefully…

  5. Here goes: Started on the pill at 17 for ovarian cysts. It shrinks them somewhat and makes periods less painful. Worked like a charm but did nothing for my acne.

    Went off of it at 24, waited 1 cycle, got pregnant with twins. LOL They tell you to wait 90 days for a reason apparently, just a precautionary tale, ladies. Had twins. Went back on pill. Made me horribly sick.

    Went on low dose pill. Worked like a charm until I stopped it to work on baby #3 (waited the 90 days this time). Had my baby girl. Split w/ my ex when she was 3 months old.

    Went back on the low dose pill. Made me horribly sick. Stopped taking it. Met a nice guy. Decided I better do something because I was NOT in a place to be having more kids.

    Had Paraguard inserted. The insertion was painful because they had to “stretch” my cervix to fit it in but once that was done it was fine. Paraguard does not have hormones (which were what was making me sick. Pregnancy changed my body chemistry enough that I couldn’t handle any more hormones). I have now had the Paraguard for over 2 years. My periods are heavier for one day and a full week instead of 5 days now but I’m not having severe cramps or any other symptoms. I don’t have to remember a pill either and it’s good for almost 10 years.

    I think that may be the solution you’re looking for. I just had to offer my two cents. If your “lady problems” are stemming from something else though, you need to see a gynecologist instead of your college public health to get that checked. They know what they’re looking at better than a generalized doctor.

    Best wishes and I hope everything begins working properly very soon.

    🙂

    V

  6. As a sexually active autistic woman, I was on the pill for many years. The only reason I stopped taking it was that the gyno-doctor told me it might be behind my lack of sex drive, which would not be a problem for you. Birth control pills do help many women’s health conditions if they affect the reproductive system, but without knowing what the particular problem is, I wouldn’t be able to tell you whether I think it would be beneficial for you. I can tell you it did not affect my brain at all, and a beneficial effect was that my periods were almost nonexistent, which was a relief as my periods are very, very heavy and I go through tons of menstrual supplies every month. I will pass along the URL of your post to the Asperger Women’s Association and the Autism Women’s Network.

    • Thanks!! Good to know that it didn’t mess with your brain. That’s really what I’m most afraid of.

  7. I tried various pills that made me angry & aggressive but controlled normal PMT, cramps and ridiculously heavy periods rather well. Eventually I found one that also really helped balance my moods all the time, didn’t cause weight gain or have any nasty side effects for me but everyone is different. I wouldn’t try some of the other hormonal interventions like shots or implants because of how unpredictable some pills were compared to others. You need to weight the potential benefits against what you consider to be the problems. There’s a lot of scaremongering about the pill but for millions it is absolutely fine. Remember you rarely hear e nice stories only the horror stories. There’s no news in good news.

  8. Is there some way you could get the information about the whys?
    If it is a clinic talk to the office manager about who the dr answers to. My understanding is that it is not legal to keep such info from patient. You may need to get a helper to do this so you don’t melt down in the office or on the phone. I might do that. Otherwise see about seeing a different DR.

    This does not sound like birth control problem but some other type of problem. It is possible you could have low estrogen in which case it is possible to take the hormones topically with fewer side effects.

    • Thanks. 🙂 I think that the scientific community doesn’t really have a “why”, but that whenever anything is wrong with the mysterious “lady parts”, hormonal birth control is always the first try, because it works most of the time, even if it isn’t perfect.

  9. Took pill for years for endometriosis and also because of fear of pregnancy. I can’t say I had any negative effects from it. Although I did get nervous about other health issues (I was really obsessed with worrying about blood clots I don’t know why) and wanted off. Then I had trouble with irregularity and bleeding issues last year and was able to have an endometrial ablation. NO more periods ever. Doubt you could talk them into that though. Can’t have kids but I had no plans to have more. Since I am around 40 in chronological years and already have a teenager it was easy to get the procedure. I have a friend is also pretty not sexually active, ever, and no plans to be so. She is on pill to deal with her irregularities and it helps her moods and makes her periods non existent so she deals much better. She is not diagnosed, self or otherwise but sometimes I really wonder.

    • Thanks!! Yeah, that whole “no more periods, ever” thing sounds wonderful… doubt they’d let that happen though…

  10. Hi, I’m autistic and normally have adverse reactions to medication too so I understand your fears, there are many types of birth control, I used a few and they did very little for me, I have polycystic ovary syndrome and it didn’t helped me except for stopping facial hair, I no longer take them because they were useless and the syndrome is under control now.
    I still had periods taking them everyday, except in the middle of the month I had a weaker but longer period and it was annoying and painful.
    My moods and senses were the same, I got depressed the same way and the same sensory differences as always.
    I am better without them, is extremely painful and uncomfortable and I get depressed but it’s over soon and I’m okay the rest of the month. I also have mental illness and fibromyalgia that causes more problems but I don’t think of getting back at them.

    • Thanks so much for sharing your experiences here. 🙂 I really appreciate it.

  11. I’m an autistic asexual aromantic cis-woman. And a health care provider (although not one in any field related to these issues.) I am reminded of my own college health center, whose answer to everything was either “stress” or “pregnancy.”

    I don’t have personal experience of being on birth control, but I do have experience of being at a similar decision point to that you describe.

    I had birth control suggested for me at one point due to irregular periods. Irregular as in every 4-10 weeks, depending, and with not fun but not really debilitating physical or emotional symptoms. I wasn’t even seeking health care for my periods, but seeing an endocrinologist for other issues, and it came up. So I asked a bunch of questions. I didn’t pull articles for this, although I did for some of her other suggestions I ultimately declined. Mostly she was worried about my bones, and thought more estrogen might help.

    The thing is, birth control (by which I mean specifically hormonal combined pill/patch/ring birth control) can make bleeding happen on a predictable schedule. Possible benefits include predictability, and in some people with debilitating side effects, physical or emotional, a reduction of these effects. This can include reduction of blood loss per cycle.

    But it doesn’t generally affect any underlying reasons for why periods were irregular in the first place. There are sometimes underlying reasons for irregular periods that can be identified and treated. There are often either no identifiable reasons or no real way to treat those reasons. And for some of those people, birth control can at least treat symptoms. But like you, I think it’s important to distinguish between treating symptoms and treating causes.

    And so that was my decision tree and so I said no.

    • Thanks so much. My thought process is very similar to yours at the moment. I don’t want to be “treating the symptoms”, I want to know what the cause is and work on that. Of course, the other thing they always tell me is “gain weight and you’ll become regular” – so much easier said than done.

  12. Disclamer idk iif im an aspie never dx, but I do have pmdd its like pms on steroids. Birth control pills helped me a lot . Ive stoped taking them cause i want to have a baby via sperm donor im 26 and never had sex so i wouldnt try to explain it to anybody its ur body u know what do with it. I never had any side effects while on the pill. Like u i have the worst cramps so bad i cant sit on my bottom. If it helps i would try it out if you quite them they dont stay in your system more than a few days after quiting them.

  13. I am a married female with aspergers. I have never taken the pill for similar reasons that you are afraid of. I don’t want my hormones messed with. I am married and have one child. We use condoms and when we have our last child (maybe only one more) then I will get my husband to get the snip. Why should I put myself through hormonal changes that are bad for me when a snip is much easier and healthier for both of us? I have had hormone problems anyway, which from my reading would only be made worse by the pill. I preferred to fix hormonal problems naturally through diet and superfoods. Maca powder is fantastic for balancing hormones and it helped me get pregnant as we had trouble conceiving. I also visited a naturopath who was really helpful in helping other health problems I had. Would you consider natural therapies instead? They might be more helpful in the long run.

    • Thanks 🙂 I generally don’t do “natural” therapies, but I do eat a healthy, balanced diet, and avoid processed foods on principle. My feeling is everything in moderation, and just be aware. I have so many issues with food that a change in my diet wouldn’t help anything, it would just stop me from eating. (I know, I’ve tried).

  14. I took birth control pills for fourteen years to prevent pregnancy. For eight years I took a 21-day pill, with one week off to allow bleeding. I did forget them quite often, and hated being the slave you so aptly describe. They made my (previously highly erratic) menstrual cycle completely regular – which was great on the one hand (it was nice to know there was a time of the month when I *could* feel safe in light-coloured trousers), and bad on the other (I went from two periods a year to twelve). Side effects were both good and bad: it severely dampened my libido, but took away the crippling period pains I had suffered. I came off them when wanted children, and fell pregnant with no difficulty. While breast-feeding, I took a 28-day “mini-pill” (progestrogen only – which doesn’t force the cycle), during which time periods occurred naturally, and regularly. I stopped taking these about four years ago, with no ill effects. It’s obvious that starting the pill regulated my menstrual cycle, but think the fact it has remained regular (and I now have terrible PMS) since coming off the pill, is down to the hormonal changes that occurred as a result of childbirth, and perhaps age (I’m now 42).

    I know the medics use birth control medicines for reasons other than pregnancy prevention, and I’ve known at least one person who was very much helped in this way. However, I think you’re very wise to be cautious, especially as they so clearly don’t believe you are asexual (patronising gits). Is there a women’s health charity that might be able to offer advice?

    • Thanks 🙂 I’m very close to walking into a planned parenthood, so we’ll see how that goes…

  15. I’m excited to see you have had such a good response to your post! I have a extra-special distrust of doctors who hand out any kind of medication to “fix the problem”. That being said, I tried birth control, and for me it was a horrible experience.

    Maybe I was too senstive, I don’t know, but it nearly drove me out of my mind. My body could not handle the pills messing with its chemistry. I was irrational, depressed, irritatible, and violent. I had a host of nasty side-effects, and will never-ever take any type of birth control pill again. But, that is just me, and others have had better experiences.

    Another thought I had when reading your post, is that I don’t see the connection to “brain chemistry” and putting you on the pill. For female issues, yes there are reason to take the pill, without using it for birth-control purposes. But beyond that, I would tread lightly…read a lot, get another opinion and if possible really get to the heart of the problem before medicating it because you are absolutely correct a band-aid will not fix a broken bone.

    BTW, I hate the unknown! (hugs)

    • Thanks so much!! “brain chemistry” – just what you described, irrationality, depression, irritability, etc. I’m quite well balanced and happy with my brain, I don’t need to mess with that…

  16. I have aspergers… I also have a daughter… because a doctor played god.

    Doctors don’t take me seriously. I have been on so many anti depressants, none of which did me any good as I am not depressed.

    It’s just that injustice/bad treatment get me down.

    I don’t like the pill.

    They should not make you take it.

    I have numbness in my leg…

    it’s concerning now but I saw a doctor about it…

    She looked at my face and said it is caused by tight jeans (end of consultation)

    I don’t wear tight jeans.

    Every worrying symptom I have ever had is treated as nothing…
    My irregular heartbeat is treated as a panic attack as are most things – Despite the fact I am always worried because of the symptoms…

    As opposed to actually having a panic attack!

    I know the difference, pity my doctors don’t…

    Or just don’t care 😦

    • I’m sorry you’ve had those responses. I think Doctors get jaded and forget to listen to us… 😦

  17. p.s my daughter tried the pill but had to stop as it had started to damage her liver.

    • Wow, thank you for your comment! 🙂 Very insightful and helpful.

  18. I don’t have an autism dx, but my adult daughter does, and some of the things you wrote reminded me of problems she has had. She is terrified of the unknown, to the point of avoiding doctors, dentists etc. She also has an unreliable memory for taking tablets, but worse than that, has an aversion to all tablets and liquid medicines apart from the chewy vitamins.
    She has used the Implanon arm implant (stays in for 3 yrs) to avoid pregnancy, but it caused irregular bleeding sometimes lasting 3 weeks. She’s now wondering what to do next. Correction: she’s avoiding the issue, I’m wondering.
    Doctors have sometimes been unhelpful and rushed. They don’t understand that questions may need to be asked, to assimilate the idea of a new medication.Some doctors have the attitude of ‘I am God, do not question me’.
    I think the pill is often prescribed to women for everything, as if it’s some miracle medicine. But, on the other hand, the pill is good at making periods regular, and modern pills exist that don’t mess with your body so much.
    I agree with newnoz that you have a right to as much information as you need, and to have it in the way that suits you best. How about writing a letter to your doc, explaining a bit about your autism and that you need to write a social script, and listing your queries? You could follow up the exchange of letters with an appointment. Any decent doctor should be fine about doing it this way if they are told the reasons why.
    Whatever you do, best of luck with it all x
    Ann

  19. I don’t have the time or ability to sit here and read every single post…so I’m going to share my views both as a young woman (i’m not used to that term) who’s both autistic and horribly obsessed with medical things.

    I’ve been on “the pill” for the past 2 months. In 2 days I’ll be starting my off week when my period starts. I never had menstrual pain- but I was NOT regular. I was having a period maybe once every 4 months or so. I was not sexually active so pregnancy was not a possibility. I went to my Dr when I got health insurance again, and we got a full blood panel work up done to see if there was a medical reason for being overweight, and if there was anything else that could be causing the irregular periods. Everything came back fine except I had hypothyroidism – so I started thyroid meds for that (as well as Vit D because I never leave the house). A month or so later, I went back for a follow up after an ultrasound to rule out cysts. She then prescribed me some birth control pills. She wants me to get a pap smear done soon but there’s no way in hell I’m getting one anytime soon.

    My experiences on the pill have been mild. I didn’t really have any negative reactions in the way of side effects. However, my first period was very heavy and lasted for a good week or so. This is likely to change and stabilize as my body gets used to having a daily dose of regular hormones going through it, instead of the hormones being out of whack. I have not gained or lost weight yet, but we’re hoping for the side effect of weight loss- I’m overweight and can’t lose weight nutritionally because of money issues.

    As for forgetting to take the pill? I’ve only come close to forgetting it once, and that was when I forgot it when I went camping over new years eve. My friend took her pills out and I realized that I needed to get mine for the morning. It becomes part of my morning routine. I wake up around 12 or 1 and then roll out of bed, search for something to drink and then take my medicine. Sometimes I crawl back into bed afterwards or I just sit on the computer for a little while, then I get breakfast.

    If you’re still likely to be forgetful, there’s this little app for iphones/ipods or texting version which sends you a daily reminder at a certain time. http://www.missmint.com/ It should help!

    My pills come in a circular dial which helps me remember which day I am on. I start with the white pills and move around the circle with the blues and then the green ones are when I start my period.

    I’m on ortho tri cyclen. There’s many different types of birth control and YES the hormones in them CAN help with dysmenorrhea- painful periods. http://en.wikipedia.org/wiki/Dysmenorrhea

    It’s the first stop to many menstrul problems because it’s just hormones. Yes it is also birth control but it’s MEDICINE above all. It helps your body regulate things that it should be doing on its own, but for some reason decided not to. Don’t worry so much! 🙂

    Also, don’t be afraid of side effects! Most of them are short lasting, and if they’re so bad that you can’t handle them, stop taking the medicine and tell your Dr when you see them next. No one is going to force you to take meds that are worse than the condition itself.

    Hopefully this helps. *hug* I was afraid too, but it’s not so bad so far. I know my boundaries- which side effects I won’t tolerate, which ones aren’t so bad. I also know that if the medicine does something I don’t like, for an extended amount of time (such as making ALL of my periods last a week + and being really heavy) I will ask to switch to a different medication.

  20. I started taking the pill in my last year of college, which was about seven years ago. I started taking it because I was in a heterosexual relationship and wanted to be prepared if I ever had intercourse. (Never did, not physically capable of it, at least not so far).

    I’ve had no problems whatsoever, although I did have worries when I went in about 1) the potential for the hormones to aggravate my already-serious depression and 2) efficacy. I weighed about 180 pounds when I went on the thing, and weigh about 200 now, and the pill (or at least the single-hormone versions of it) is less effective if you’re that big. (I do not know why that is, if it has to do with adiposity or if it’s just math; I’m as heavy as I am because I’ve got a huge amount of muscle mass, so if it’s the former I can ignore it but if it’s the latter I have to make sure whatever I’m taking is effective at my weight).

    I’ve noticed exactly one side effect, and it’s great: I don’t have periods anymore. I’m just taking it as directed, skipping every fourth week, but it still does that. Awesome, no?

    I do sometimes forget to take them, though. And I even have the same all-consuming fear of pregnancy that Clarissa mentions above … I guess even that is no match for a truly disorganized person!

    Anyway, probably most relevant to you is that I, too, had major worries that it would make me (even more, in my case!) emotionally unstable. I voiced these concerns to the nurse-midwife I saw, and she told me she’d include that in her decision about which formulation of the pill she prescribed. It’s a combination pill with, she told me, a higher proportion of estrogen to progesterone than some. Lemme go see … there it is. Nortrel, 1 mg norethindrone and 35 micrograms ethinyl estradiol.

    So I guess what I would tell you/them most of all is that the pill is not a single entity, there’s a lot of different hormone cocktails, and it is definitely worth bringing up anything you might be worried about with your doctor so that they can factor that into their choice of prescription. And if the one you try doesn’t work out, you can try another.

    • Thanks so much, Lindsay! I’m horrifically tiny (5’3, 92 pounds – I lost a bunch of weight this fall when I broke my ankle and haven’t been able to put it back on)… anyway, thanks for your assessment and experiences. I do know there are lots of varieties – perhaps there is one for me out there… I’d love to have the side effect you mentioned 🙂

      • I am neither a person with autism not asexual and took the pill (has, ortho tri-cycline and several others – made my periods horrific, made me feel demented for half the month and filled with anger. I got a hormone free IUD at 34 and am thrilled. I would rather have irregular and miserable periods than ever take BCP again! Good luck!

  21. I’m in my mid-thirties, with ASD / Asperger’s. I don’t know how much my experience will help you, considering I’m in Canada, but certainly willing to share (and yes, you can put it on the page, if you put it up).

    I was prescribed birth control pills to cope with nasty cramps. Had no intention of having sex, still have no intention of doing so – as I mentioned in your article about asexuality, I’m pretty much asexual myself. Just don’t really feel the desire for it.

    Anyway, the first one I was put on was Alesse (0.10 mg of levonorgestrel, 0.02 mg of ethinyl estradiol). I had no particular side-effects with it, except that my cramps tended to only hit every two to three periods after that, rather than every single one. After it went generic, I was on the generic – until this past summer, when I went on Seasonale (0.15 mg of levonorgestrel, a synthetic progestogen and 0.03 mg of ethinyl estradiol), an extended birth control pill (i.e. you take it constantly for 3 months and then you have a period, rinse and repeat).

    I definitely had the problem of sometimes forgetting to take the medication; I’m not as bad as some, but I do have problems with that. I found that with Alesse (and its generic), if you forgot to take it twice, you’d start your period then; with Seasonale, if you forget to take it three times, you start your period then (sort of). Both of them have the same setup, of pills in day-labelled packaging. The good thing with Seasonale is that you only have your period four times a year, rather than twelve.

    As well, my mother found some information that suggested that Vitamin E might have a good effect on menstrual cramps.

    Now, down to the nitty-gritty…. I don’t have much in the way of medication sensitivities. Meds that are supposed to make you drowsy or fall asleep don’t affect me that way. I *did* have a problem with Effexor, but that’s something that apparently a number of people have (though it’s not in the literature). I *know* that I’m nowhere near as sensitive as some (I have a friend who has to take fractions of anti-histamines and anti-anxiety meds because she’s that sensitive), so I don’t know how much help my experience will be. But there it is!

  22. Doctors are always quick to want to try “fix” us. And it does sound like they are trying a quick fix on you. I have an inherent distrust of doctors, who often have no idea what they are doing but pretend that they do. My yoga teacher went into a coma when her doctor gave her the wrong medication for a tummy bug she picked up in India because they thought it was something else.
    Are irregular periods a problem for you? Do they think that regular periods will change your body weight issues? Or that the pill will regulate your hormones to have some other effect on your constitution that is caused by irregular periods. Are there long-term diseases that can be caused by irregular periods? Are they just wanting you to be more “normal” by putting you on the pill? That’s like trying to make you neurotypical by putting you on a pill.
    Stress and anxiety are huge factors in keeping our periods regular and anyone with SPD lives under huge stress and anxiety. We all have different ways of coping with that. Also you say your eating is balanced. How accurate is that statement? Do you take nutritional supplements with your diet? What and how we eat directly affects menstruation.
    I hope these are the kinds of questions your doctor is asking before they suggest the pill as the only option.

    A friend of mine was crippled by a spinal tumor that doctors said the only option was severe spinal surgery, otherwise he would be paralyzed for life. He refused and completely healed himself with meditation and diet…in 2 months! There are always other options, but we need to be REALLY well informed and researched to make the best choice for each individual one of us.

  23. I recommend you try vitex first.

    • I’m not really looking for recommendations – that’s up to my doctor. Just experiences. But thanks

  24. Also I’m not sure what you consider ‘irregular’ but you should read http://www.amazon.com/Taking-Charge-Fertility-Anniversary-Edition/dp/0060881909/ref=sr_1_1?ie=UTF8&qid=1358051733&sr=8-1&keywords=taking+charge+of+your+fertility Even though you aren’t planning on getting pregnant, etc it does a wonderful job of explaining a lot about what is going on with ovulation, etc. I don’t know why they don’t explain these things during sex ed class. Definitely going to give this one to my daughter, it is very educational!

  25. I don’t know what is your problem, but I had atrocious menstrual cramps for a long time, alongside some other problem (like falling unconscious almost every month because of the pain). I am a twenty years old Aspie and I guess I have some sort of medicine sensibility. I hate medicine, perticulary when it’s clearly destined to put chaos into our bodies chemistry.

    My doctor keep on giving me birth control for every problem (including attention disorder… I’m an aspie, being focused is something natural), and everytime I ended up with heart problems, which gotten worse with the training. Oh, and it didn’t work. Never. I was regulated, but the ”falling on the ground one time per week” got worse. During the time I was on those things, I gained weight (i’m still trying to lose it, one year after), but not that much. Around ten pounds or so. But all the time, I was always on the edge of fainting. I don’t know if it got link with the pills, through.

    So, using my little brain, I just decided to drop them, and started using some pain-killer( brand: Aleve. I don’t know if it’s the same elsewhere).
    And it worked out just fine for the pain. Two days of some painkiller per month worked better than any medicine this doctor made me swallow. And those don’t have any long-term side effects.

    Sorry if there is any mistake, english isn’t my first language. And sorry if this comment is totally useless ^^’.

    • Thanks for your comment! I have similar cramping problems – can’t walk, often lose consciousness, etc – but Aleve doesn’t work for me, so I use motrin instead. But thank you for your comment, all good things to listen about.

  26. I have a step-daughter who is autistic and 18 years old. Her mother abandoned her and her siblings years ago so her father has been caring for her solely (with the help of his mother) for years. I have been living with her for about a year. She hates having a period. She is also what I would call asexual. She has stated that she is never going to want to have children. A few years ago she was put on depo-provera treatment (quarterly birth control) to try and eliminate her periods. It worked well for a couple of years but for about the last 9 months to a year she is having quite a lot of break through bleeding. I am having a really hard time finding any information on what other developmentally disabled adults and their care givers do under these circumstances. She is considered highly functioning but really has the mind of a very clever 8 year old child, and always will.

    Any experience would be greatly appreciated.

    I used depoprovera for 5 years myself and never once had a period during that time so as for your original question, this might be a good option for you if it works the same. If you’re under weight, gaining a little isn’t going to be the end of the world. I took low hormone dosage pills in the past and both of those types of birth control never had any affect on my mental facilities but I do pretty well with meds in general and am luckily very healthy.

  27. Hi.
    I started the pill when I was about 19 and continued for 7 years on and off and always had anger issues and meltdowns when I was on it, according to partners. I need to go on it again now, but I am scared. I’m googling and found this page. Hopefully there are some answers here in the comments that can help. Aspie 33yrs

  28. Took the pill to treat my severe acne, among other things. Some brands will definitely make you feel horrible. I was still having cramps and such until I switched to a generic brand called Gianvi. It was the same dosage as Yaz but for some reason, I just started feeling so much better. The crazy acne cysts were gone and the cramping subsided. I am still debating if it’s because I switched brands, or if I just took the pill long enough to see changes. I have the opposite problem for the moment: I am nervous about going off the pill. The hope is that all my crazy hormones that gave me grief will have resolved itself and stabilized by now post-puberty, but I fear the opposite is true and that I will have crazy hormones for the rest of my life!

  29. I know this is an older post but I would still like to share my experience with you. I’ve been on different types of the pill off and on for the past 19 years, I’m 36 now and have no intention of having children, but I am sexually active (sometimes). Self-diagnosed Asperger’s but halfway in the process of getting an official diagnosis.

    The first thing you need to make sure of is that your doctor isn’t prescribing the pill simply to test whether it would make a difference. Doctors do this sometimes with medication considered to be “safe” and with no severe side effects. If it works, problem fixed, if it doesn’t then they’ll know a bit more about the problem. Trial and error. It’s a very widely accepted way of practicing medicine.

    For me, the biggest benefit of the pill has been being able to have FULL control over my periods. With the very light dosage pills, I’ve been taking them non-stop whenever I felt like it, to postpone my period. It’s brilliant. (And I’ve asked a gynaecologist’s advice before doing this, she said it wasn’t a problem). On the pill, my cramps and bleeding also become slightly less severe.

    I gained some weight after I first started taking them (about 8lbs) but that didn’t bother me very much. What did bother me was my loss of libido, which is why I’ve switched pills several times. The pills with a low estrogen / high progesteron mix seem to work best for me, possibly because my high libido is caused in part by a naturally high level of progesteron. Because the natural hormone balance is different for each individual, I would recommend to try out different types and mixes even if your current one is “working”, because another one might work even better. That is, if your doctor goes along with it of course.

    With regards to other mental side effects, I haven’t really noticed anything. It doesn’t increase or decrease my anxiety or my sensory sensitivity. It doesn’t increase or balance out my mood swings (although I don’t get very severe PMS). The “lighter” the pill and the more attuned to your natural hormone balance, the less you’ll notice. It’s basically a way for me to regulate and control my natural hormones by giving them a sort of steady baseline to work on.

    Hope this helps!

  30. Hi, I have to be honest, I’m autistic and 24. I have asked for help from the doctors and they don’t have a clue about autism and the effects that may happen if using certain pills/ birth control. It has been a nightmare. I have changed pill 4 times (because of bad monthly cramps) and the side side effects I feel have made me feel even more tense and on edge and mood swings bad ( being autistic feeling certains ways feel even bad than people without) have came of the pill and trying to get back to normal. I wish doctors could tell you how it may effect people with autism, instead of saying what they hand will help.

  31. Hello I’m 24 years old and I just found out that I’m a aspie a few months ago.Someone suggested that I needed to take a online test to see if I am.I didn’t think I was but I said hey what the heck I’ll take it anyway.I didn’t think I would come out with the out come of having a 95% chance of having it as as a score.But I did no matter how many I took and retook.I still remain unofficially diagnosed because the doctors where I live are 25 years behind in medical knowledge and they’re prejudiced idiots who won’t listen to their patients or other doctors.Let’s face it.Arrogant people shouldn’t be doctors,only compassionate listeners should.

    Well anyway I’ve always had emotional issues.When I was put on a pill at 15 I reacted to it as expected.My brain chemistry went haywire.My mom had to have me taken off of it immediately.Granted back then she didn’t understand why I never reacted to medication normally.One tylenol would make me pass out.The doctor of course wouldn’t listen and didn’t understand this.She kept switching up pills and none would work right in any area.Eventually she performed a paps on me and the metal thing was too big.I jerked because it hurt and there went my hyman.I have hip deformity as well that she ignored.This is the reason why I haven’t been to a gyno since.It’s not Like I have to worry about being pregnant.I still have my V cared because my social skills with the opposite sex are horrid.It’s not like I don’t try to talk to them it’s just nothing comes out right and I don’t realize it till someone points it out.

    The unknown also scares me.So since my periods are crazy irregular it’s a nightmare.As I’m typing at moment I’ve had the weirdest one yet.It’s only been two weeks since my last one.This is the first time they’ve been so close together.I’m worried to say the least and I’ve cried a few times.I don’t have the money to have it checked out and I’m scared to.They never listen and can’t figure you out so what’s the point?You walk out knowing the same thing you did walking in,diddly squat.

  32. Hello, What an interesting thread! Thank you for posting. I am in my thirties and have had problematic periods since they began. A decade on the pill and many failed attempts at hormone regulation later I am wary of the solutions being peddled as the Drs rarely listen when I say that I am very sensitive to medications and that hormones make me feel ‘wrong’. I’d learn to deal with the ‘wrong’ feeling if it was accompanied by a relief in the original symptoms, but so far that’s not been the case. It has been such a challenge to try and find out why it is that a period can bring me to my knees for two weeks yet I can cope with other painful things just fine (I’m ok with the dentist for example). The sensory issues that can accompany Aspergers may well be the answer though, lights, sounds and especially smells can be very traumatic. Going to see gynaecologist (finally) to have things checked, at this point in my life I am only looking for reassurance that there’s nothing more sinister going on, that I don’t have PID or endometriosis or similar. I won’t accept any more hormone treatments, sadly I have to take someone with me to get that point across as otherwise I’m just seen as ‘difficult’. And if one more person says that all is due to stress/depression I may well scream.
    The thing I find helps the best for me is NSAIDs, I start to take them as soon as I feel the back ache and cramps creeping in and stay on them until I forget to take them because there’s no pain anymore. Has anyone else had success with that?

  33. Firstly thank you for creating this discussion, it is the only useful thing I have found so far in answering my concerns. I have a 16 yo daughter with Aspergers who has a boyfriend she loves and she now wants to have sex. I would like her to go on the pill (which she has agreed to) to prevent pregnancy. She also has irregular and very heavy periods. I am concerned about the side effects of the various pills, having found out just today about the horrific experiences of many people taking Yaz or Yasmine (which by the way the local GP has prescribed her). I am comforted by the posts above, it seems that most people expereince minor side effects from the combination pill and if we are looking for increased mood swings, weight gain etc we can deal with it by taking her off it. Can people be specific about which contraceptive pill seems to have the least side effects, in general and in relation to Aspergers?
    Thanks again

    • Hi Jo, thanks for your comment. Since writing this post nearly 2.5 years ago, I’ve had a series of medical issues that lead to me being on various forms of the pill and other hormonal treatments for about a year. Unfortunately, my experience differed quite a lot from many people who commented here – I had horrible, life-threatening side effects from all 3 different kinds of birth control they put me on, and now I’m back at square 1 and unable to take anything hormonal. That being said, my experience seems pretty rare – the team of doctors treating me are completely baffled, as they’ve never had anyone have all of the reactions I’ve had (one med actually caused exactly the opposite of what it was supposed to, and the doctors can’t figure out why because it should have been completely impossible biologically).

      So all that being said, I think every girl is different, autism or not. The important thing is that if everyone (doctor, patient, parents if relevant) is in agreement about trying a pill, it might take several tries to find the “best” one, but its probably worth trying. But do keep an eye out for side effects, and if one thing doesn’t work, it’s OK. I’ve seen some comments that sometimes autistic people are more sensitive to medications, so maybe its worth trying a lower dose, but that’s really up to the doctors. I don’t know most of the pills specifically by name, but they’re effectively all the same thing, either a combination of progesterone and estrogen, or just progesterone. The doctors know much better about what the combinations are, and can adjust accordingly based on side effects and other things. You do have to start somewhere, though. And remember, the scary internet is full of horror stories about every single medication. No one pill is perfect for everyone.

  34. Hello! I’m an Autistic lady and I have been on birth control in the past for two years. My symptoms ended after the first month (save for a random month long period once) however, my executive function wasn’t good enough to remember to take the pill every day so it was almost moot point. My NT friend at the time, however, took it and it altered her moods to the extreme. Everyone reacts to it differently but if you feel it isn’t going to help you always have the right to refuse. I actually found your blog because I’m currently pregnant with my and my partner’s first child (Demi-asexual here so I’m in the same boat! My partner however is sexual and we decided we were ready for our first baby :)). My hormones have been crazy and my meltdowns have spiked in the last week and I was wondering if hormones changes could cause that. I can’t ask my specialist because I’m currently looking for a new one. Sigh.

  35. Hi, I’m 43 and was only diagnosed as autistic 4 months ago, I have spent my whole life knowing that there was something different about me (not WRONG with me), but being ignored by doctors, healthcare personnel, family, friends, etc…

    Long story short – puberty at age 8. Put on birth control pill at age 14 to try and control heavy bleeding. Bleeding got worse and more erratic – also cramps increased as did mood swings. At 22 managed to get pregnant whilst on pill – doctor would not take me off pill during pregnancy as he thought a drop in progesterone might cause miscarriage. After pregnancy taken off pill and put on an implant in my arm (higher dose of progesterone – as this was OBVIOUSLY the problem). Periods got heavier and more problematic – now bled every day, annoying but manageable as not too heavy. 8 years ago put on the mirena coil (again upping the progesterone) to try and stop constant bleeding. Since then constant bleeding punctuated by a week of flooding (soaking a nighttime towel in under half an hour) every 4-6 weeks. No one taking my seriously or looking into what was actually wrong, just replacing the coil when the time was up – as it “was working and preventing pregnancy”, no what was preventing pregnancy was constant bleeding so no sex.

    My Dr retired and so I had a new Dr who asked me why I didn’t have my autism listed on the system. I said I wasn’t autistic. He said “Oh. I can’t find the report that says that”. I said “Huh”. He said, “When were you tested, and I’ll chase up the report.” I said, “I’ve never been tested.” He said “You should have been, it’s obvious to me.” Next thing I know I’ve been diagnosed and all of a sudden everyone is listening to me.

    I’ve had the coil removed – I now only bleed (flood) for a week or so at a time and they are looking into why I’m so heavy. I’ve been offered a hysterectomy as an option if they can’t come up with anything else. Also been diagnosed with liver and kidney problems – could have been caused by prolonged high dosses of progesterone.

    For years I have been complaining of being unwell and have been ignored as with the diagnosed autism I didn’t seem to be able to get my point across – also with the high levels of progesterone in my body I was too lethargic to push my point, I think. Without the progesterone I have so much more energy. Now I have the diagnosis people actually take the time to listen to me – ok some people treat me like I’m “slow”, or talk to me as though I’m “deaf”, but most people just go “Oh, so that’s why you’re interesting/different.”

    Sorry to go on but I think that if I had been diagnosed earlier, maybe as a child, I would have been listened too and not just put on every increasing dosses of progesterone.

    Don’t allow healthcare professionals to bully you into something just because they think your autism means that you have learning difficulties and so don’t understand what’s going on and therefore they know best.

    Good luck.

    • Thanks for this! I’m so sorry it took so long and was so difficult for you, but am glad you’ve found some solutions. I had a run-in with progesterone (actually two different ones) after this post was written, and we discovered that even at extremely low doses, it makes me suicidal (I have no prior history of depression at all) – just goes to show just how much hormones can react badly with our differently-wired brains.

  36. I’ve started to take birth control a few days ago, for the first time in my life. But I already recognise symptoms. I have a headache the whole time and I’m feeling “more” autistic. I’m far more sensitive to light, noise and smells. Also I had multiple anxiety attacks. But on the other way it made my period lighter and half as short as it used to be.


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