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.
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.
*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.