I couldn’t write this article yesterday because I had PMS.
PMS (premenstrual syndrome) is a nuisance for many women. But few people know that PMS is even worse for autistic women. Autistic women are more likely to experience PMDD (premenstrual dysphoric disorder), the severe form of PMS. The symptoms of autism also get worse during PMS.
The stereotype of autism and ADHD as disorders that mostly affect adolescent boys hurts neurodivergent women. Healthcare professionals rarely talk about how hormonal fluctuations affect the symptoms of neurodivergent women.
My autistic life as a PMS monster
Seven days before my periods, my autistic and ADD (attention deficit disorder) symptoms get worse. I’m even more sensitive to noise and bright lights than normal. It’s difficult to concentrate and get things done. I’m also more anxious and irritated. Sometimes I even get meltdowns when I have PMS.
I try to avoid any social events during my PMS because social interaction is just too exhausting then. If it was possible, I would avoid any events at all, except for lying on the sofa while watching TV and eating chocolate.
Ideally, I would finish all tasks that require high levels of concentration when I don’t have PMS. I have meds for my ADD, but they’re not as effective when I have PMS because my ADD symptoms are so much worse then.
It’s just that autism and ADD come with executive dysfunction which makes it extremely difficult to make plans. This means I can’t plan my work effectively enough to delegate all my difficult tasks into the 3 PMS-free weeks I have each month.
Neurodivergent women experience severe PMS symptoms
According to a study that compared a group of autistic women with a group of non-autistic women who had a learning disability, “there is a marked increase in premenstrual syndrome in women with autism compared with matched controls”.
92% of autistic women showed symptoms of PMDD (premenstrual dysphoric disorder), the severe form of PMS. The occurrence of PMDD in the control group was only 11%.
In a study on the autistic experience of menstruation, many respondents reported that their sensory issues intensified before or during periods. The participants also described difficulties regulating emotions, worse anxiety, and more meltdowns.
Autistic women are not the only neurodivergent women who experience worsening of their symptoms during PMS. Research shows that ADHD symptoms also worsened in women during PMS. This is my experience as well; both my autism and ADD get worse before my periods.
Why are neurodivergent women more prone to premenstrual dysphoric disorder?
Why is it that PMS symptoms are worse for neurodivergent women? The underlying mechanism of PMS itself is still unclear, let alone how it affects neurodivergent women.
There is an interesting Japanese study on the altered autonomic nervous system activity as the potential cause of premenstrual dysphoric disorder. According to the study, the women who were diagnosed with PMDD, the severe form of PMS, showed an altered function of the autonomic nervous system. The study might indicate that women with lower autonomic function are prone to more severe PMS symptoms.
Research shows autonomic dysfunction may occur in people with ASD (autism spectrum disorder). Could autonomic dysfunction be the link between autism and PMDD?
The reason for PMDD in autistic women may also be our hypersensitive nervous system. It makes sense to me that a sensitive nervous system could also be more sensitive to hormonal fluctuations.
We need to talk about neurodivergent women’s issues
We need more research to make any conclusions. I wish doctors would show more interest in women’s health issues, especially neurodivergent women’s health issues.
People often think PMS means you’re just a little cranky for a couple of days. For some women, PMS can be like that.
For women like me, PMS means extreme anxiety and dysfunction for a whole week each month. When you’re already disabled and experience dysfunction in daily life, it’s sometimes unbearable it gets even worse because of such a natural thing as the menstrual cycle.
Autistic women’s issues are underrated in society because we are often better at masking our autism than autistic men. On the outside, it looks like we are dealing with our symptoms better.
In reality, we face many challenges that are specific to neurodivergent women. The effect hormones and the menstrual cycle have on our symptoms is one of the most invisible aspects of life as an autistic woman.
Also read:
I am autistic. My mother hid it and died with that secret. She did not want a record of my condition on my medical history. She was a RN and said I would be treated differently. She is and was right.
I’ve had a normal life and have a college degree and exercised in my youth to control my emotions. I never knew I was autistic until my mother died 2 years ago. I’m 48 years old and watch my
Niece struggle. I wanted to help her and while googling her symptoms and my mood disorder not otherwise specified diagnosis, I found myself. I checked all the boxes. I can not be spontaneous. My PMS is disabling. I use movie references a lot. I hate change. All the boxes. Why didn’t my mother tell me? I never knew I was different. Now I have the words I need to describe who I am and how it feels to be me. I tried so hard to be normal for my mother and when she left this world I had no more reason to continue my facade. I began having trouble with eye contact and didn’t know why. I get stressed out very easily. I have cried uncontrollably at work after getting overwhelmed. If it weren’t for trying to help my niece I would just continue to think I’m crazy. I get suicidal. I have gave away my cars because I fantasized about falling asleep in them. I am a lab technician and have struggled all my life to maintain employment and be “normal”. I read the number one cause of death for women with autism and NO learning disabilities is suicide. I believe that. My niece is 12 and has those feelings. She had a learning disability. She is gifted in art and music but can’t do math. I was gifted in math. My dad who also had a college degree, has zero empathy and also gifted in one aspect but lacks social skills though he had many friends. I have recently alienated 2 life long friends. I quit smoking marajuana and become repetitive and have found that I prefer texting instead of talking. I’ve actually been in Troy me for texting to much. It’s a relief to know there are others like me in the world. There are many of us I assume that go undiagnosed our entire life because we are so skilled at masking. I currently see a PAwith a psych specialty and she is very unsympathetic and says everyone is on the spectrum. I here that a lot. I get put in the everyone category knowing I do not fit in the everyone space. My mother enraged me. I think it is abuse to make a person who is different fit in. It hurt me. I’m done doing it. If I were to be forced I would try to find a way out of this world.
Sorry to hear about your struggles. But please know that you are not alone. It is heartbreaking but true that the risk of suicide in autistic women is multiple times higher than in neurotypicals. I believe being undiagnosed raises the risk even higher because you don’t even know why you’re struggling. I hope you’ll find a better specialist to treat you. That’s just ridicilous to claim that “everyone is on the spectrum”. If that was the case, autistic people wouldn’t struggle at all since the world would be made for autistics!
Troy-trouble* for texting.
I take the depo provers shot to stop my pms. I get off of it temporarily because it’s not good to stay on it and to see if I have finally entered menapause.
I wandered why my mother cried when I got pregnant, she knew I was different. I’m sure she didn’t think I should have kids and she may have been right and she hung onto life and lost 200+ lbs because I told her I needed her. I’ve always know who I was. I never had a proper diagnosis. I’m not much use in this world anymore. I try to have a project daily. Either chores or art work or a craft. Or to learn something knew. I really think the symptoms 10 days prior to my period will eventually lead to my death. I need to get another car. How can I not? I have to be independent. I have no choice. I have no one. As si many of us can probably relate to. I’m really fine with it most of the time. It is what I prefer. I have had relationships. I had a boyfriend say to me he always wandered why I was the way I was and then he lived with me and figured it out. I assume he meant my similarities to my father. I never asked what he meant. Like I said before, I thought I was normal and that all my different was in good ways and smart ways. It usually was. But I had great intolerance for things I thought were stupid.