Groups for autistic women NOT about late diagnosis

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Butterfly88
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14 Sep 2024, 4:39 pm

I'm an autistic woman and was diagnosed when I was 7. When I've been to groups for autistic women most of them were diagnosed later so the groups seemed to focus on late diagnosis and I felt as though I didn't really fit in. Are there any groups or organizations for autistic women that aren't so focused on late diagnosis?



Rhapsody
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14 Sep 2024, 10:22 pm

I've never come across any groups, so I don't have anything helpful for you. But I was diagnosed at age 9 and totally understand what you mean. I never had that...moment? The one where they figure out their diagnosis and suddenly everything clicks into place that late diagnosed people like to talk about? Because I've known for basically as long as I can remember. So I completely understand where you're coming from, I can't really relate to the experience of a late diagnosis either, and I feel a little bit left out of those discussions too. But I'm really happy those people got the answers they were looking for.

Given how rare it used to be for women to be diagnosed at all, let alone early enough it's not a big moment of their life, I can't imagine most areas would have enough of a population to manage to get a group like that together? I live near a fairly large metropolitan area and the only autism groups are parent support groups. Assuming you mean groups irl and not online. This is the nicest online autism community I've ever come across.



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15 Sep 2024, 1:24 pm

Rhapsody wrote:
I've never come across any groups, so I don't have anything helpful for you. But I was diagnosed at age 9 and totally understand what you mean. I never had that...moment? The one where they figure out their diagnosis and suddenly everything clicks into place that late diagnosed people like to talk about? Because I've known for basically as long as I can remember. So I completely understand where you're coming from, I can't really relate to the experience of a late diagnosis either, and I feel a little bit left out of those discussions too. But I'm really happy those people got the answers they were looking for.

Given how rare it used to be for women to be diagnosed at all, let alone early enough it's not a big moment of their life, I can't imagine most areas would have enough of a population to manage to get a group like that together? I live near a fairly large metropolitan area and the only autism groups are parent support groups. Assuming you mean groups irl and not online. This is the nicest online autism community I've ever come across.

Yes, I’m happy others got answers too. That’s true, it’s probably not all that common. I do enjoy it here.



Edna3362
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16 Sep 2024, 4:48 am

I would look for the same thing, more or less.

Though, I'm not sure how much is getting diagnosed as an young teenager, with the entire school and family being very involved in the process as opposed to self reported counted as 'late diagnosed'.

Or undiagnosed but deemed unofficially autistic by professional impressions at age 10 counts as early diagnosed, all because an official assessment is so expensive that it took years.

Because my household is too poor to have me professionally assessed, while seeing lots and lots of signs throughout childhood that I'm not neurotypical to begin with.

So I just survived mainstream school, while unmasked in a violent way.
Because I don't have issues with academics -- it's the students I'm having issues with.

But I cannot relate with going invisible or feeling like a freak.
I cannot relate to masking and all that fear and judgment.
I cannot relate longing for help; whether it's self help or academics because I developed hyperindependence.
I cannot relate to the shame of needing help because I genuinely do not see the point -- more like I want to do things my own out of sheer pride and control.

I cannot relate the whole 'slipping through the cracks' and all that imposter syndrome experience.

Can't also relate to the experience of going to hospitals and therapies as a kid on top of daycare.
Can't relate to the early diagnosed experiences of having series of clinic visits and multiple doctors -- back then, that's for the privileged.
Can't relate needing a nanny or an aide or the idea that I cannot be left alone because that's really against the trait of hyperindependence.

I cannot relate being talked over by anyone because of my diagnosis, I cannot relate to people using my diagnosis against me...


:lol: I'm in a limbo in more ways than one.


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Rhapsody
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16 Sep 2024, 2:36 pm

Edna3362 wrote:
Can't also relate to the experience of going to hospitals and therapies as a kid on top of daycare.
Can't relate to the early diagnosed experiences of having series of clinic visits and multiple doctors -- back then, that's for the privileged.
Can't relate needing a nanny or an aide or the idea that I cannot be left alone because that's really against the trait of hyperindependence.

I don't know if you're in the USA, but all of these things that you're describing are not rich, privileged people things here. They're things that can be accessed through public schooling in every state. My family was very poor. My brother (who was diagnosed at age 5) and I were free school lunch kids. We both got our diagnosis through the public schools. Since the 90s there's been funding in place to get kids diagnosed and to get them the help they need. All of my diagnosis and testing was paid for by public funding through my schools. There's also funding to get aides, and various therapies within school during school time. I had occupational therapy in elementary school and speech therapy up through high school - all supplied by the schools. When my high school lost our speech therapist the school was required to get me private speech therapy outside of school. My brother's classrooms often had aides. I knew plenty of kids that had an aide at school that followed them from class to class and, again, it was all part of the accommodations that schools are required to provide. Not everyone knows about these options, so I was very lucky in that regard, but the publicly available funds meant my family had access when we wouldn't have.



Edna3362
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16 Sep 2024, 3:42 pm

Rhapsody wrote:
Edna3362 wrote:
Can't also relate to the experience of going to hospitals and therapies as a kid on top of daycare.
Can't relate to the early diagnosed experiences of having series of clinic visits and multiple doctors -- back then, that's for the privileged.
Can't relate needing a nanny or an aide or the idea that I cannot be left alone because that's really against the trait of hyperindependence.

I don't know if you're in the USA, but all of these things that you're describing are not rich, privileged people things here. They're things that can be accessed through public schooling in every state. My family was very poor. My brother (who was diagnosed at age 5) and I were free school lunch kids. We both got our diagnosis through the public schools. Since the 90s there's been funding in place to get kids diagnosed and to get them the help they need. All of my diagnosis and testing was paid for by public funding through my schools. There's also funding to get aides, and various therapies within school during school time. I had occupational therapy in elementary school and speech therapy up through high school - all supplied by the schools. When my high school lost our speech therapist the school was required to get me private speech therapy outside of school. My brother's classrooms often had aides. I knew plenty of kids that had an aide at school that followed them from class to class and, again, it was all part of the accommodations that schools are required to provide. Not everyone knows about these options, so I was very lucky in that regard, but the publicly available funds meant my family had access when we wouldn't have.

I'm not from the USA. :D

And my country is a still developing country.
There are not a lot of free for public stuff and underdeveloped social welfare dev. in my city, let alone an established healthcare system involving therapy until as early as 7 years ago and it's still in working progress.

I'm 29 now. The whole thing is available when I was turning 22.
A good 18+ years too late to for my parents to ask free schooling and stuff, let alone have any school that accompanies any special services that includes having any therapists.

The latter is not available in my country at all yet.

The idea that regular class school teachers needing to know ND kids and the all-inclusive education system is a very new concept that I literally had to witness my own sped teacher teaching other teachers what to do just few years ago before pandemic.

In my city so far, most aides are coming from a private sector facilitating said aides with conjunction to a school as a separate institution. And it ain't free.

In any case my country doesn't fund a lot of these things.
And if it did, most of it either went to major cities -- which I'm not from, or, instead, from private individuals who can afford to fund entire cities by themselves.

Heck, speech therapists are still a current shortage across the country.
Like there's only 3 universities that teaches it, and their graduates would rather work and earn money abroad.

OTs are actually in short in my city -- and their clients also came from other cities.


My diagnosis costs like, 3+ months worth of my household's entire savings at the time.
Still the most expensive thing I technically 'owned' even without taking account on inflation.

8O If my parents had the government to require me to get therapy, that would be a fever dream...
.. Or a death sentence if it weren't free and had to pay out of the pocket.


So even if I'm, say, born a level 3 support needs in need of 24/7 care -- I'd still wouldn't able to relate going to series of doctors and therapists at a young age.
Unless it's a full-on charity case paid by either a really rich distant relative or a very persuasive networking to convince professionals to work with me for free -- or, born rich then move elsewhere or born in a more developed parts of my country or in a different country.


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Rhapsody
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16 Sep 2024, 4:08 pm

^^^ That's unfortunate. I'm sorry you had to deal with that. Hopefully it gets better for future autistic kids!



Edna3362
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16 Sep 2024, 10:44 pm

Well, that's the thing; that's still being fought here.
And when it's passed, there's no implementation yet (like most well-written laws here).


The prospect of having free diagnostic assessment is one of the things being pushed by and for autistics at the moment.

But I'm sure proposing and implementing laws can take... Decades to ever come true.


To go back to the topic...

:lol: Where exactly do I count?
Am I early-enough diagnosed or late-enough diagnosed?


10 years old is too young for a self diagnosis and early enough to pass off as a childhood diagnosis.

But 14 is old enough to be able to self diagnose through the internet and late enough that it's deemed to be passing the cracks. :o


All that, despite none of the masking and fear.
I never lived in an anxiously socially conscious life, I don't understand imposter syndrome...

... And I'm also not the type who says "people like me" referring to the more disabled counterparts implying to check less disabled counterparts' privileges, which I've seen a few times, wanting to take part of discussions.


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FemmeDimanche
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29 Sep 2024, 5:19 pm

I'd like to find a group like this, too. It's kind of defined me my whole life and has basically been inescapable, sort of in the background the whole time.