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 24%  24%  [ 8 ]
Age 16 to 30 27%  27%  [ 9 ]
Age 31 to 45 21%  21%  [ 7 ]
Age 46 to 60 18%  18%  [ 6 ]
Over 60 9%  9%  [ 3 ]
Total votes : 33

GardenSong
Emu Egg
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Joined: 15 May 2021
Age: 67
Gender: Female
Posts: 2
Location: Midwest

15 May 2021, 3:53 pm

Recently diagnosed at 67.
Right now, taking in all this means for understanding the past and living the rest of my life and knowing I am not a weird failure, family embarrassment, or freak of nature.



diagnosedafter50
Toucan
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Joined: 15 Dec 2020
Age: 54
Posts: 262
Location: United Kingdom

15 May 2021, 5:44 pm

Recently diagnosed at 54.



diagnosedafter50
Toucan
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15 May 2021, 5:45 pm

GardenSong wrote:
Recently diagnosed at 67.
Right now, taking in all this means for understanding the past and living the rest of my life and knowing I am not a weird failure, family embarrassment, or freak of nature.

:heart:



diagnosedafter50
Toucan
Toucan

Joined: 15 Dec 2020
Age: 54
Posts: 262
Location: United Kingdom

15 May 2021, 5:49 pm

:heart:

IsabellaLinton wrote:
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.



diagnosedafter50
Toucan
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Joined: 15 Dec 2020
Age: 54
Posts: 262
Location: United Kingdom

15 May 2021, 5:52 pm

MrsPeel wrote:
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.

I put my difficult menopause down to smoking heavily as that affects the hormonal and endocrine system.
It seems I may have something to learn about how autism affects menopause.
It began at 42, still need a fan on in bed at 54. Its got better, only take half the dose of oestrogen.
I've had some challenges with my womb, needed scans and exploratory operation, but I put that down to the valium I am on as the episodes have got less severe each time they happen, just fed up of going to hospital.



diagnosedafter50
Toucan
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Age: 54
Posts: 262
Location: United Kingdom

15 May 2021, 5:59 pm

IsabellaLinton wrote:
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.

Image



"Things happen that leave a mark in space, in time...in us." Brenda Chenowith, Six Feet Under (HBO)

Crikey sorry you had to go through this.
I am under stress that I cannot do anything about. I daren't even measure my blood pressure in case it's high, as the medics used to tell me it was high.
The fear is because I want my heart to work normally and not be affected by the stress that I cannot do anything about, even telling myself I cannot do anything so why worry? does not work.
I wake up each morning with toxic anxiety, lately I've been getting out of bed later and later, even though I wake up at the same time.
I fall asleep easily due to meds but wake early and fear looking at the clock, I even fear taking off my eye mask that I wear for bed.
I get a bit of fatigue but I am vegan and some days I don't get enough protein.
I want to live a long and happy life and die with peace of mind. Dunno how I will get there, or how to go about it, due to the nature of the problems I have, but I want to stay healthy in spite of them none the less.
I have never had a breakdown (scary) I did have drug induced psychosis, that was the scariest illness I ever had.
I am sorry you had to go through this.



diagnosedafter50
Toucan
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Joined: 15 Dec 2020
Age: 54
Posts: 262
Location: United Kingdom

15 May 2021, 6:04 pm

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.

Sorry you feel your system is shot.
I go out in nature but instead of directly experiencing it, my mind wants to run a commentary on everything I see.
"look I am experiencing nature" it does my nut in. I like Eckart Tolle and want to be present, however I was struggling because I think I have ADHD, and trauma, and Bessell Van Der Kolk said "trauma is a disease of not being present".
Well it's high time I was, so I heard a podcast by Bernhard Guenther and Laura Matsue from veilofreality.com and they talked about Dr Peter Levine, an author who's books I read some time ago, this lead me to sniff around Facebook and come across somatic experiencing.
I can't afford a practitioner but one is giving me 4 free sessions.
I also need to do it alone as this will take me to a place where I can finally be present.
I joined this group which is helpful. https://www.facebook.com/groups/554552981360011



diagnosedafter50
Toucan
Toucan

Joined: 15 Dec 2020
Age: 54
Posts: 262
Location: United Kingdom

15 May 2021, 6:09 pm

MrsPeel wrote:
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!

My meltdowns were never this dangerous.
I think circumstantial stress causes them rather than hormones, I am 54. Bleeding still but its not normal, I am under the doctors, no cancer thankfully.



diagnosedafter50
Toucan
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Age: 54
Posts: 262
Location: United Kingdom

15 May 2021, 6:13 pm

hurtloam wrote:
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.

Mine have improved yet I used to need the maximum dose oestrogen it was horrendous, soggy bras, like a heating element inside of me from the heart level upwards.
It seemed to get worse when I got flustered.
It's been 12 years nearly now.
I never liked being too cold or too hot, I love warming up, I love cooling down, but not too much.



diagnosedafter50
Toucan
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15 May 2021, 6:16 pm

:heart: :heart: to you and your Aunty.

OutsideView wrote:
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!



Acton Bell
Tufted Titmouse
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Joined: 19 Jun 2020
Gender: Female
Posts: 29
Location: London

16 May 2021, 6:58 pm

I was formerly diagnosed aged 34 but had had suspicions for many years prior to that. Was misdiagnosed with various other things over the years when looking back retrospectively my autism was actually very obvious but I guess a mixture of growing up in the 80s/90s, fewer girls being diagnosed back then and doctors ignoring my mother when she mentioned it to them meant that I wasn’t. Diagnosis for me has been positive and has made an awful lot of my life and my experiences make a lot more sense.


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diagnosedafter50
Toucan
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17 May 2021, 2:46 pm

Acton Bell wrote:
I was formerly diagnosed aged 34 but had had suspicions for many years prior to that. Was misdiagnosed with various other things over the years when looking back retrospectively my autism was actually very obvious but I guess a mixture of growing up in the 80s/90s, fewer girls being diagnosed back then and doctors ignoring my mother when she mentioned it to them meant that I wasn’t. Diagnosis for me has been positive and has made an awful lot of my life and my experiences make a lot more sense.

:heart:



Joe90
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17 May 2021, 5:43 pm

I didn't know I was 'autistic' until I was diagnosed at age 8. I often wish I was like 99% of other Aspie females; not knowing or not getting a diagnosis until adulthood.


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Empathy score: 61 out of a possible 80. (High)


diagnosedafter50
Toucan
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Age: 54
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17 May 2021, 6:55 pm

Joe90 wrote:
I didn't know I was 'autistic' until I was diagnosed at age 8. I often wish I was like 99% of other Aspie females; not knowing or not getting a diagnosis until adulthood.

Oh!
That is the opposite of what I wanted.
Had I of known I was autistic at 8, I would've had an explanation for the scoldings and strange behaviour.
I could have said to the teacher who scolded and humiliated me, "I am autistic, get with the times teacher" :)



honeytoast
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18 May 2021, 12:18 am

I suspected I had autism for a couple of years but wasn’t able to get a diagnosis until I was 22.

There are little things, such as isolating myself for hours, not understanding certain phrases or words, sensory stuff. I think the biggest thing is just how naive I can be. And both of my parents having mental illnesses lol.


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diagnosedafter50
Toucan
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18 May 2021, 8:15 pm

honeytoast wrote:
I suspected I had autism for a couple of years but wasn’t able to get a diagnosis until I was 22.

There are little things, such as isolating myself for hours, not understanding certain phrases or words, sensory stuff. I think the biggest thing is just how naive I can be. And both of my parents having mental illnesses lol.

:heart: