I’ve really hesitated on writing about this topic. Over the past few months, as I’ve researched how to deal with these changes, I’ve read hundreds of articles. While the articles show amazing insight, the comments are harsh and relentless. What surprised me is these harshest comments were mostly written by women who felt their perimenopause was not difficult. Good for them. I’m not one of those women who find this easy.

It reminded me of when I started writing about autism. I was faced with defending my experience of autism to families dealing with autism. They would see me as too abled to relate to their experience, or doubt the female autistic adventure was autism at all (it was very male centric in the early 2000’s). I remember thinking, “Why are people so resistant to accepting that this is a spectrum? Why does my experience seem to invalidate others experience of autism?”

The work has changed on the topic of autism, thanks to revolutionary writers like Liane Holliday Willey, Dr. Barry Prizant, and the late Steve Silberman, may he rest in peace. They helped people to see autism as a spectrum, making my words read more like a point of view rather than a statement of fact. I hope I’ve contributed something as well, but there really is no metric for these things.

Along with my autism experience now comes a perimenopause experience, placing me back in the “fight to be seen” camp. I don’t enjoy being here, I never did, but here I am. I’m here hoping that if I share my experience, despite the criticism, that my words will help those in my same position to not feel alone.

At first, I blamed it all on Covid.

It was convenient then to dismiss the feelings I was having to the unwanted isolation of Covid. I was sad for days on end, with no real reason. I was never able to get enough sleep, dismissing it as not getting outside enough. I had a revisit of IBS symptoms I had previously controlled with diet, dismissing it to stress. I was foggy brained and unmotivated. I think you see where I’m going.

I really didn’t know the term perimenopause yet. I thought being a woman meant I was to have a period for years, and then it would just stop as suddenly as it started. I was not prepared for years, and yes I mean years, of symptoms that came in difficult to track patterns, and sometimes came on very suddenly.

At one point, I thought I had early onset dementia. For the first time in my career, I forgot a song I had played hundreds of times. If you know me, you know this is a big deal. I was known for my musical memory, memorizing all of my pieces, usually after hearing them once or twice. My teachers even relied on me for my memory and often had me lead groups of students with them. One blustery afternoon while practising alone in my room, the song left my brain like it had never been there. For a moment I couldn’t even remember what I was playing at all. The title, the notes, the moment, it all left my mind. I felt frightened that my once infallible memory was MIA. Not to metion, I couldn’t label my feeling. It was like the early days of therapy when I was learning to label my emotions and express them more clearly to others. Did I somehow become more autistic? I had no idea what to think.

The symptoms continued to become more erratic. I would feel like I had the flu, but didn’t have a fever. I would have days where food was repulsive, interlaced with days where I wanted to eat everything in sight. I had pregnancy symptoms, cravings and all, that even prompted me to do a pregnancy test. During a six month stretch of my most intense symptoms, I had 3 positive pregnancy tests, all of them false.

Then the worry started. I worried I had Covid but didn’t test positive. Then I worried I had early onset dementia, Parkinson’s, and even cancer. With Covid lockdowns still firmly in place, I didn’t want to visit an ER and occupy the doctors from the more serious cases. I was too exhausted to talk to anyone.

I decided to try and take matters into my own hands. Now that I was 25 lbs heavier I turned to diet and exercise. I did everything from intermittent fasting, to keto, to paleo, and even vegetarianism. I did HIIT workouts, Yoga, strength training, but no matter what I did, I just gained more weight and felt tired. Not to mention the pain..the strange muscle and nerve pain. Nothing made sense.

Then the heart palpitations started. I would wake up in the night feeling like I had run uphill for an hour. Night sweats would soak my sheets at least one night a week. Hot flushes would stop me mid sentence, and would trigger my autistic need to retreat. Not great when you’re trying to make a living, or in line to pay for groceries.

My husband even mentioned I might be experiencing menopause, but like many women, I thought I was too young. I was 44 and still having regular periods. I still didn’t know the word perimenopause. Frustrated, and out of ideas, I kept a diary of my symptoms. As soon as the lockdowns ended, I visited my primary physician.

It is always a tough dance to decide when I need to disclose the autism, and when to keep it to myself. Not sure if I was entering menopause, and unable to separate the intensity of the symptoms from my autistic experience, I decided to tell my doctor. It was our first visit, and I was very nervous.

I gave him my notebook and told him I was officially diagnosed with Asperger’s Syndrome in my late 20’s, now known as Autism Spectrum Disorder. As I explained my symptoms, he typed away, asking me questions about diet, vaccinations, and if I did any drugs. After about 10 minutes, he told me what I was experiencing was not normal, said I was obese (my BMI was 36) and sent me out to be tested for diabetes. I told him I was open to having tests run, but asked him to test my hormones too.

He did not order any hormone tests.

My blood tests did not show any other abnormalities. I didn’t have diabetes. In fact, by blood panel showed good health.

I left feeling……I don’t know what I was feeling. Did Covid isolate me so much that sensory overload of autism was taking control? If my body was fine, it must be in my mind, right?

I then pursued online, self-guided CBT. I gave up all my favourite foods including dairy, chocolate, and carbs. My energy tanked, my skin looked washed, and I often cried myself to sleep. I hated eating, and resented exercise.

Fast forward to 2024.

I’m now 5 years into perimenopause, and I am certain it is perimenopause. I’ve read books, researched web articles, and listened to pod-casts chronicling the experiences of hundreds of women who have had intense perimenopause symptoms. Just knowing I’m not loosing my mind has calmed my inner voices and set me on this path to find out what I can do next.

 

In fact, my experience learning to deal with autism has proven to be very helpful with perimenopause. Breathing techniques, giving my self sensory space, and advocating for my needs are skills I learned in therapy after my autism diagnosis. Now that I know I am not dying or losing my mind, I can apply my skills to the symptoms of perimenopause.

As I await seeing a physician at the Women’s College Hospital in Toronto, I’m now excited about my new adventure in life and how to help autistic women learn to cope with this change. In the meantime, know that you’re not alone, you’re not crazy, and emerging research is helping women to cope with this change much better.

For those women who experienced little to no symptoms during your trip to menopause land, you are lucky. Please don’t invalidate other women’s experiences. To the woman who accused me of “making women look weak” I am very sorry you feel this way, but I am not making us look weak. I am showing incredible strength by sharing my journey and making the world kinder to those of us barely making it through a day.