Dear Friend, How Low Can You Go? ↓

Please, please don't wait to find out.

Dear Friend,

I am so sorry to hear how low you are feeling, and please know that you are not alone. I know you are only telling me your surface worries, the palatable stuff.

Photo by Stormseeker on Unsplash

The tears.

The joint pain.

The “funny stories” like the one about how were so exhausted that you forgot how to drive, and put your car into reverse instead of first gear, and launched through your neighbour’s new fence!

I mean, yes it was funny, but dangerous too. OMG you even had your kids in the car?! What a relief nobody got hurt - this time. It is getting harder to laugh this stuff off though, isn’t it?

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Look, I am worried about you and I think you should go and see someone. It sounds like perimenopause. I’m sorry to be the one to have to tell you, but it’s not just going to go away. I heard somewhere that it can take as long again to improve once using menopausal hormone therapy as it insidiously took to get that low. Did you know it can also take a while to titrate doses to the extent where you are getting any relief from your symptoms?

You can maybe find a doctor who can help you here.

I know you are hiding other stuff from me. You are being a rescuer and an empath as usual. I know, I know, you just don’t want to worry me. But I would feel better if I knew you had someone to talk to about all this though. Let’s share this burden, I want to help.

I have been there, I am still there, regressing even as we speak! But I am getting oddly used to it, with enough validation, information and support.

How low did I go? Well I am pleasantly surprised I have survived autistic perimenopause this long, to be honest. I have regressed exceptionally, and am still somehow hauling myself along. Self-advocating from the pits is hard work, but it is necessary for me to cope. Info dumping is my love language, so strap yourself in!

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I want you to let me help you, but I’m so wrought out that all I have is ten minutes and this page. (And stop calling me, I am not going to pick up, okay? I love you but, for fuck sake, will you just stick to text messages?!)

Have you heard of The Rage? Have you felt The Rage? Has it unleashed itself on your family and your colleagues when you least expected it? It is so scary to completely lose all self-control and feel so violently angry. But that’s not your fault. Your mind and body are going through a massive natural and normal hormonal transition, and people need to know to leave you the fuck alone sometimes.

The extreme fluctuations in hormone levels are what cause the extremes in symptoms, and it makes our cognition, our moods and our periods really unpredictable. Regarding the periods: Shorter or longer. Heavier or lighter. And the menstrual diarrhoea. Beyond gross!

Executive dysfunction is my norm. I never remembered to carry sanitary pads, so I was always paranoid of flooding. It stopped me from wanting to leave the house at all. The sensory overwhelm is the worst. The smell, the cramps, the mess. Now I just wear period undies only and it has dealt with not only the anxiety and practicalities around unexpected bleeding, but also now I don’t stress about my equally unpredictable pelvic floor. No more stress around perimenopausal stress incontinence!

I don’t want to jinx it, but the Mirena I so uncomfortably had inserted also seems to have stopped my periods for now! 🙌

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Hey, have you talked to anyone about getting an autism assessment yet? I know, adult mental health don’t have capacity and private assessments are extortionate. Surely it was never meant to be this hard?!

Have you watched this video? I watched it a few years ago when I started on this path. It was a sudden revelation that led to my immediate self-diagnosis. A good use of 32 or so minutes! I was shocked and so upset for poor misunderstood Little Sam, but a late diagnosis is so liberating. The autistic community is really welcoming and we all accept self-diagnosis because loads of us don’t have the means for a formal assessment either. A later in life autism self-diagnosis is infinitely better than no diagnosis at all.

My perimenopause is really shit. Before my autism and ADHD diagnoses which messily showed themselves in early peri, I was dealing with loads more meltdowns, shutdowns and a sense of impending doom at all times. Plus I completely lost my memory and it was not funny.

Ironically I had just finished my New Zealand Comedy School courses and was gigging at stand up shows every couple of weeks. I loved it but kept forgetting my bits. It was so frustrating because I worked so hard to learn my lines, and was enjoying networking in the comedy community which is a neurotypical-free zone. I had to stop performing in the end as I was getting so tired driving home late in the dark and it wasn’t safe. I think that was when I started getting suicidal thoughts too - when I was driving and completely exhausted.

Oh my goodness, the exhaustion 😭

It is like early pregnancy exhaustion again. Soul destroyingly, bone crushingly tired, with a total inability to sleep. Insomnia.

What fresh hell is this?

Then it would stop for a while, and so I thought maybe I was just crazy. A failure. Too much and not enough, just like I had been told all my life.

Underslept, overworked, my mask cracking and my body falling apart. It became harder and more exhausting to hide my autistic traits. But it felt safer to hide away. Nobody wants to see me like this. How are they all holding it together anyway? With my elders saying they just got on with it, menopause is no big deal, what am I even complaining about?

The shame, the deep dark cavernous shame. Please don’t let it draw you in.

Our elders had their reasons not to talk about it. Social taboos were bigger then. We know better now, so we can do better.

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What does doing better look like these days? It doesn’t look like oversharing photos of your meals, your holidays, your “I am coping” false mask all over the socials. For me, it looks like asking for practical help, it looks like afternoon naps, it looks like making sure I change my oestrogen patches every third day.

It’s staying hydrated, it’s keeping on top of chronic pain management, it’s not reflexively telling people “I’m fine” when they want banal small talk.

For me, doing better right now is knowing and facing the fact that there isn’t yet enough medical information, academic research nor widespread knowledge that autistic perimenopause is a thing.

I will not let that stop me. We still owe it to ourselves to book our medical appointments, tell health practitioners how low we are already feeling, and getting supports in place immediately.

Please, please don’t wait. You are suffering at a rate that no academic research team is going to be able to keep up with, no matter how incredibly well intentioned they are.

Please, please don’t wait. You are suffering at a rate that no public health campaign can disseminate and normalise our experiences. Nobody can give us the gold standard, best practice treatment available.

There is no formula yet, no strategies, protocols, cures or treatments. Yet. The reason you don’t have this information available to you is that research is still in its infancy.

There are people working on this right now though. Dr Rachel Moseley and her research colleagues have compiled this document entitled ‘Resources for autistic women and people with ovaries at menopause’.

Here they are again, this time at the Autistica webinar, giving the best discussion on Autism and Menopause that I have yet to see.

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I am truly sorry. None of this is easy or pleasing to engage in, but it is all extremely validating.

It’s not our fault that we didn’t know we were autistic sooner.

It’s not our fault that we didn’t know we were perimenopausal sooner.

When we know better, we do better and we can now do our best with what little we have.

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We need to let our medical teams, friends, therapists, families and networks know now that we are struggling. Because what we do know is that autistic midlife women are at three times greater risk of taking their own lives than non-autistics.

Please, please don’t wait. I don’t know how low you will go, and I don’t want us to wait to find out.

Reach out if you need me. Let’s all help each other through this. We have suffered enough. But let’s not suffer alone.

Your friend,

Sam xx

P.S.: Autistic perimenopause is a temporary regression. We just need to get through the hardest part. *

*Please insert cliche of your own choosing here. I am in no mood for toxic positivity today.