Women only: What age did you discover you were autistic?

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At what age did you discover you were autistic / aspie / PDD-NOS?
Age 0 to 15 19%  19%  [ 8 ]
Age 16 to 30 30%  30%  [ 13 ]
Age 31 to 45 21%  21%  [ 9 ]
Age 46 to 60 23%  23%  [ 10 ]
Over 60 7%  7%  [ 3 ]
Total votes : 43

MrsPeel
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10 Apr 2021, 5:44 am

Questions for women:
- At what age did you realise / discover you were on the spectrum?
- Also, if you are heading for or past menopause, do you think that has affected your autism?

Here's the back-story:

For most of my life, I did not know I was on the spectrum.
However, I was having increasing difficulties with various of my own behaviours, for instance my extreme need for alone time to recharge (affecting my family life) and my intolerance of certain activities such as conference calls (affecting my work), until eventually I discovered the signs of autism in females and it all clicked. I was 46 at the time.

Since then, I've been having a harder and harder time managing it. Right now, my emotional regulation is completely shot and I've developed some kind of stress or anxiety disorder. But autism isn't supposed to get worse over time, is it?

Now at my age, presumably I'm in the perimenopause and my hormones would be in flux. So I'm guessing that, even though I haven't been troubled by symptoms such as hot flushes, hormonal shifts may be exacerbating my autism, making me more prone to mood swings and meltdowns.

This led me to wonder whether it might be a common experience for women to have apparently worsening autism in the menopause years (say late forties to early fifties, typically)? Would this result in an upswing in numbers of women seeking diagnosis for the first time in this age bracket?

So that's the hypothesis.
Hope you'll add your vote!



dragonsanddemons
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10 Apr 2021, 10:43 am

I was diagnosed when I was around ten, had no clue what it meant until I looked it up five years or so later, was expected to meet NT standards for most of my life (my parents thought it just meant that I was shy and smart). So I was nominally diagnosed in childhood but did not get any benefit from it.

I’m nowhere near menopause, but my autism has either worsened or become more apparent due to circumstance (or both) from high school on. For the record, I was diagnosed with Asperger’s syndrome, but under the DSM V criteria, I would almost certainly be diagnosed with ASD level 2, not level 1 as most people would assume, and that also has resulted in many problems over the years (and also explains the disparity between me and people who actually do have ASD level 1 or the equivalent).


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blazingstar
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10 Apr 2021, 11:40 am

I wish I had something helpful to say about this topic. I didn't not figure out I was autistic until nearly age 64. I never thought about autism in my life because I had no idea I was autistic. Not even a tiny hint. I knew I was different. I knew I had a harder time with a lot of things in life ,etc, etc.

I don't know if my autism is worse or better. I just learned to live my life in the best way possible for me, and as a result, my life has gotten better.

I suspect I did better in life not knowing I had autism. Now that I am mature enough understand autism in relation to my life, it is helpful to know and that has also improved my life.


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hurtloam
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10 Apr 2021, 12:08 pm

There was a documentary on TV about adults who had discovered in later life that they are autistic. My Mum (seriously in denial at this point, but now realised she's autistic too) said that she thought that's what's wrong with me.

I've never been able to connect with people. It explained why I was different.

I still can't connect with people. I know a lot of people and they like me, but I don't have personal connections. I don't form romantic relationships.

They say it only takes meeting someone once to make a new friend. Rubbish. You've got to do something to keep the momentum going and it's really difficult.

I have 3 real friends, which I guess is normal-ish. We only meet up once ever 2 months, even before covid. That's not an NT friendship. I don't feel like any of them really understand me.

I feel really lonely today. Most of the time I'm not bothered. I get on with what I enjoy.



hurtloam
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10 Apr 2021, 12:12 pm

Sorry I forgot to mention hormones. I'm not perimenopausal yet, but have had hormonal issues, hot flushes being the worst. I hate it. I hate feeling too hot. I hate the feeling of being sweaty. I just feel uncomfortable and that in itself makes me feel grumpy.



MrsPeel
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11 Apr 2021, 1:00 am

hurtloam wrote:
They say it only takes meeting someone once to make a new friend. Rubbish. You've got to do something to keep the momentum going and it's really difficult.


I agree with this completely.
Sometimes it seems like it might be possible for me to be friends with someone, but I can't keep it up and it falls apart.
I have two friends whom I see sporadically, we meet up every few weeks, and I'm very grateful to have them.



hurtloam
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11 Apr 2021, 3:46 am

MrsPeel wrote:
hurtloam wrote:
They say it only takes meeting someone once to make a new friend. Rubbish. You've got to do something to keep the momentum going and it's really difficult.


I agree with this completely.
Sometimes it seems like it might be possible for me to be friends with someone, but I can't keep it up and it falls apart.
I have two friends whom I see sporadically, we meet up every few weeks, and I'm very grateful to have them.


I find that even if the other person is NT, they struggle to keep it going too. So don't feel too bad about it.

And there's a variety of reasons, sometimes they just have so much to do with family and work and so on. I think its sad that as a society were living in a world that shoves friendship down the priority list.

But yes, it is more difficult for us on the spectrum. As an analogy, I feel like we're doing a high five, but I only manage to hit one of their fingers.

At least I've known all my adult life why I find it hard. My brain just works differently. Its still frustrating though.



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11 Apr 2021, 4:39 am

My aunty had Aspergers but she was more like classic autism so much that you could tell as soon as you met her. She got worse over the years. She would go shopping or to the pub when I was a kid but ended up never leaving the house, then not even coming downstairs.

I wasn't sure which option to vote for. I always felt different and knew I was somehow like my aunty even though we were very different and I didn't know anything about autism back then. In my twenties I read about it and thought it described me well but didn't get diagnosed until my early thirties. I might be gradually getting worse or maybe my comfort zone has just shrunk due to limiting myself in an attempt to be more happy. I'm not affected by menopause yet.

hurtloam wrote:
As an analogy, I feel like we're doing a high five, but I only manage to hit one of their fingers.

Ooh I can feel that!


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Fireblossom
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11 Apr 2021, 5:48 am

I was diagnosed some time between the ages of 7 and 10, which was also when I first heard the term asperger's syndrome, but I didn't look it up and actually understand the meaning until I was 12.

Quote:
Since then, I've been having a harder and harder time managing it. Right now, my emotional regulation is completely shot and I've developed some kind of stress or anxiety disorder. But autism isn't supposed to get worse over time, is it?


Not as far as I know, but in some life situations it can become more or less visible than before. If you've had changes in your life that require more socializing for example, it'd make sense if your life got more stressing and things were harder to handle.



IsabellaLinton
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11 Apr 2021, 9:08 am

My assessment was three years ago today. I began self-identifying about five months prior, when my daughter said "You know you're autistic, right?!" It was a lightbulb moment for me. I began doing research, discovered WP, and booked my assessment almost instantly.

I had all the common characteristics growing up, and previously received diagnoses such as mutism, depression, anxiety, complex trauma, misophonia, and agoraphobia. I had countless sensory issues but hadn't heard of Sensory Processing Disorder, which is now identified as a comorbid for me along with ADHD. I've also suffered two strokes which affected my ability to mask (among other things).

My autism seems to be worse over the years because my limbic system is fried. I'm so exhausted from social and sensory pressures that everything is more overwhelming than it used to be. It stands to reason that our nervous system becomes tired over time, and our hypersensitivities become more debilitating. I've been in shutdown for years and don't expect to recover to the functional state I once reached. I'm OK with that. I take one day at a time and ensure my little world is sensory friendly, with a minimum of stimuli or social obligation. In my case menopause is not related at all.



hurtloam
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11 Apr 2021, 10:03 am

I feel like my system is shot as well.

The only thing that really helps me is going out in nature by myself.

I'm curious about somatic experiencing therapy. I think out bodies do weird things like holding on to trauma.

I haven't had any serious trauma, except for a road accident, which I actually don't think affected me that badly.

I think that the constant bombardment from sensory overload and having to deal with people has had a huge effect on me. Like a dripping tap. It's got too much over the years.

I feel like I need to be shaken out like a rug.



IsabellaLinton
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11 Apr 2021, 10:22 am

hurtloam wrote:
I feel like my system is shot as well.

The only thing that really helps me is going out in nature by myself.

I'm curious about somatic experiencing therapy. I think out bodies do weird things like holding on to trauma.

I haven't had any serious trauma, except for a road accident, which I actually don't think affected me that badly.

I think that the constant bombardment from sensory overload and having to deal with people has had a huge effect on me. Like a dripping tap. It's got too much over the years.

I feel like I need to be shaken out like a rug.


Yes, a dripping tap or a threadbare rug. Every day of life means another day taxing our emotional, mental, social, and sensory reserves. At a certain point our ability to compensate or regenerate runs dry. I've told the story of my nervous breakdown in 2001 when my adrenal system failed from repetitive stress stress overload. I couldn't make cortisol or stress hormones such as adrenaline any more and I nearly died from heart failure as a result. I believe a similar effect happens to our nervous system with the repeat assaults of autism, sensory stress, and social overwhelm. Over time we learn more about how to deal with autism cognitively, but it's never enough to balance what we've already lost from sheer exhaustion. That counts for men as well. I do think hormonal changes may play a role because our hormones are tied to the adrenal and limbic system. It's just that in my case which is a rather complicated story, it isn't the cause.

Here's a book which I highly recommend, about the mind-body connection. It's informative even for people who haven't suffered catastrophic trauma in their lives. Daily survival is often stressful enough to harm and alter our bodies.

Everything is connected.

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11 Apr 2021, 12:56 pm

That looks interesting. Thank you.

I'm too tired to explain words why I agree. But I agree with what you've said



MrsPeel
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14 Apr 2021, 5:34 am

Thanks for the replies, everyone!

It's gone a bit quiet, anyone else willing to vote in my poll?

I don't mind if you disagree with my hypothesis, I'm just interested to hear other people's experiences with diagnosis and/or menopause, maybe have a bit of a discussion over what aspects of autism we struggle with as we get older.



ArtsyFarsty
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14 Apr 2021, 8:51 am

I didn’t begin to suspect until I was 41. Yes, I was always “different” and considered eccentric, but I always attributed it to my rather unconventional upbringing.



IsabellaLinton
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14 Apr 2021, 9:40 am

As I get older it seems I have less and less in common with other women. My autistic traits stand out more because my appearance and behaviour don't conform with social norms. Women have generally started to act alike by middle age, but I haven't joined the fray, and I couldn't copy them if I tried. It's as if I've missed another milestone of being female.

When I was younger and a single parent, I think people saw my eccentricities as the result of being a "young, fun, quirky" woman, "an individual", or at worst someone who was overwhelmed by stress and parenthood. It was assumed I'd snap out of it as the demands of parenting slowed down. As you know it's always been more than an eccentricity. As I age it's more apparent that my personality isn't the result of stress or a failure to launch into adulthood. It's who I am, and who I always was.

I've noticed that I have less patience in social situations and I need to protect my coping reserves as much as possible, so I don't become depleted. I set aside at least a week for recovery after doing anything outside the house. I'm much kinder to myself, and I'm able to forgive myself when things go wrong, but that does include setting priorities and refusing to tax myself with anything extraneous. Some people may see me as selfish, but setting healthy boundaries has been key to my survival. I can't be a "yes" person anymore, and I can't offer support 24/7 without thinking of my own needs too.

It's a process of two steps forward, and one step back when I deal with society ... which is lightyears better than before.