Why My Autism Diagnosis at Age 42 is a Women's Health Issue

Women aren’t men.

It took 42 years to get an accurate autism diagnosis because, the patriarchy.

I don’t fit the typical (outdated and in many ways problematic) diagnostic criteria in the DSM (Diagnostic and Statistical Manual of Mental Disorders. My thoughts on this another day).

Girls and women often present differently than boys and men, and haven’t been included in the vast majority of clinical research studies (let alone folks who aren’t white). So why would anyone think a girl who doesn’t always present with ‘classical symptoms’ be autistic?

Read that again.

It was nearly impossible to find a qualified healthcare professional who actively reads current research, and who understands the complexity and nuances of working with a high performing, overachieving, epically(!) high masking yet exhausted 42-year old woman who didn’t fit a ‘traditional’ model of autism, yet also in all the ways, ticked every.single.box.

Women and girls simply haven’t been included in autism studies, until very recently. 

(WTF, is right.) The ‘classical’ autism diagnosis is largely based on 

► young, affluent white boys who tend to be nonspeaking math savants

► who have highly focused interests such as studying maps and train schedules (which I also happen to love, btw), 

►  and did I mention they’re young, affluent, white boys?

 

42 years of not understanding why I felt so disconnected from myself and the world.

42 years of feeling broken, flawed, uncomfortable and unsafe in my own skin.

42 years of incomplete and incorrect medical diagnoses that disregarded the body I inhabit

42 years of being outright gaslit by the historically white, male-dominated western medical community

Which brings me to peri/menopause and women's health.

Women are often taught not to listen to their own needs, and have historically been ignored when they speak up about their health concerns. Maybe you’ve had this experience, too. I know this well. Too well.

But thankfully, women’s health research is finally having a moment. And we’ve got some playing catch up to do.

It’s the year 2024, and we’re just now hearing the word perimenopause. (Again, WTF is right.)

I’m now in my mid-40s, and it turns out I’ve had some subtle and not-so-subtle symptoms of perimenopause for awhile:

► Restless sleep

► Surges of heat

► New aches and pains

► Stubborn weight gain

► Random bouts of epic rage

► Asking myself “is this it? Is this all there is?"

But because I’ve been trained not to listen and trust myself for so long, it never crossed my mind this is what it could possibly be. Maybe you’ve had also had this experience.

I’ve recently been through some pretty epic trauma, but I passed off my symptoms as mere relics of that trauma, unrelated to anything biological.

And also, because I’ve been told there’s no way, I’m too young. Maybe you’ve also heard that, too.

𝐒𝐢𝐦𝐩𝐥𝐞 𝐝𝐞𝐟𝐢𝐧𝐢𝐭𝐢𝐨𝐧𝐬*:

►  Peri/menopause: the 2 -10ish years before the last 12 months without a period

► Menopause: the moment you pass 12 months without a period (yes, menopause is a moment)

►  Post-Menopause: the time after you reach menopause 

Menopause is not a disease, and it is not an illness.

(*natural menopause, not associated with surgical menopause or illness)

𝐅𝐮𝐧 𝐟𝐚𝐜𝐭𝐬*:

► Perimenopause typically starts sometime in your early to mid-40s, but can start as early as your 30s.

► Symptoms can last a few months, or years. Even well into post-menopause. 

► An irregular cycle is not always the primary indicator you’re in the peri/menopause transition. There are several women in my life who know the exact the day and time they get their period each month, and they’ve been dealing with peri/menopausal symptoms for years. 

(* always consult with your licensed healthcare provider. This is not medical advice.)

If you think you’re way too young to be in perimenopause, may I invite you to pause and reconsider that what you’ve been taught might be incorrect or misguided? 

Or perhaps based on outdated research?

AND, I’m in no way saying what you’ve been taught is wrong or incorrect. I’m simply sharing my own lived experiences - and those I hear quite often from so.many.other.women.

It may have taken me 42 years to get an accurate autism diagnosis, but I didn’t get here overnight, or by trusting my medical team to lead me in this direction. It’s been a process. Yoga, meditation, a colleague, 3 betrayals, a cannabis doctor, and a podcast all led me here (fodder for a different time). 

I followed my intuition. I listened. 

Just as I’ve also been doing when it comes to the peri/menopause transition.

As I’m inviting you to do the same for your own health and wellbeing. 

You have everything you need. It just may takes a little practice in discernment and deep listening to what your body is communicating.

So until then, let’s shine a light on funding more women’s health research. 

We deserve as much.