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jpp
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05 Jun 2020, 5:00 pm

Hi there,
I have been searching all over the place to find a community of other women diagnosed well into adulthood.
I was diagnosed last year at age 49. I also have a teenage son on the spectrum.
There is so little out there for our community. I'm curious to connect with others to build community and to feel like i'm not so alone with this aspect of my life.
I live in British Columbia, Canada. I am married with two children and many pets. I work as the executive director of a charity and previously practiced law. I'm big on hiking, reading, and learning.
Anyone else out there interested in connecting?
J.



Last edited by jpp on 05 Jun 2020, 7:28 pm, edited 1 time in total.

B19
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05 Jun 2020, 6:10 pm

I am a senior age member, in my 70s, who has spent years of searching for the existence of mutual support groups, connectivity, reliable research, books and articles specific to the older female cohort. These don't exist. For those of us in this group, this is an additional layer of marginalisation and invalidation.

Last year I lobbied the most funded AS service provider in my country to provide services to older women, noting that they did not spend any of their funds specifically on adult women of any age. They apologised for the omission. However apologies without remedial actions are of little value in problem solving.

We are not counted, recognised or provided with services anywhere that I know of. This greatly dismays me sometimes, though it does not surprise me, given for example the resistance to and level of ignorance about female AS women, and their different phenotype. We have not even progressed to the point of scientific and community awareness of our different phenotype.

The situation is not very much different for senior or middle-age AS men; this suggests that ageism is therefore the decisive factor which primarily drives the marginalisation of all AS people in middle and later life.

There are a number of middle aged women members here on WP, very few in the senior age group. The specific needs of this group are not validated anywhere else, very rarely acknowledged here, a fact that seems to stem from the majority of members being in younger cohorts.

Sadly, the only time and attention that researchers have afforded older aspies is to document our suicide rates as much higher than NT populations. Connect the dots...

On the other hand, to be more positive, we can view it as a field that is ripe with possibilities. These will have to be AS-driven possibilities though; institutions which claim to serve the needs and support AS people are as (perhaps more) infected with ageism as in any other service delivery area.

I hope this will change in time. I think it would be more likely to change if AS people of all age groups took an interest in it, as they in turn will eventually be affected by the same prejudices and omissions.

However there is no sign of support for that here as yet, so a warm welcome you to WP and I look forward to your posting here.



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05 Jun 2020, 6:24 pm

Welcome to Wrong Planet!

I am also in the elder group. I was 64 before the penny dropped about having autism. I have a phd and run my own business which is case management and advocacy for people with disabilities. But I've also been a biologist and a registered nurse. I've been married more than once and have raised some 7 children, only one of which was a biological child. I didn't do that great a job with any of them, however. :( But I am in a strong marriage now with an NT man and no children in the household and we rarely hear from any of mine or his.

I am an avid gardener and wilderness canoeist. I was headed out this summer to the upper Liard River in Yukon, but the border closing put an end to that. I also read a LOT.

B19 has been a tremendous source of support for the elders in this group - and for the entire forum for that matter. And there are more middle aged people here too. Give them a while to pick up on the thread.

So you are in British Colombia, B19 is in New Zealand and I am in south Florida. I suppose the fact that we are spread so far around the world says something for how many of us there are. There are not any services for elder women with autism. There is a program for adults with autism, but you have to be able to prove you were diagnosed before the age of 18, which kind of leaves us out. :D

Although we are small in number, we have a lot of experience. I have learned a lot from the women on this forum.


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jpp
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05 Jun 2020, 7:18 pm

Thank you for your quick replies B 19 and blazing star. It’s helpful to be validated in terms of my lack of success of finding a community so far. For all the reasons B 19 pointed out, once I started seriously considering seeking diagnosis, it took me a year of research and consideration, and some counselling to finally make the decision to proceed. I’m glad I did but it’s taking me almost a year since then to feel a strong pull to unpack this, more deeply than simply affirming what I’ve known for a long time.
Last night I watched the new standup show by Hannah Gadsby on Netflix Canada. She’s a very funny, intelligent, and inspiring woman who is also out with her autism (as well being out as a lesbian). Hannah's voice combined with the global BLM Movement and protests raging right now, I found myself early today and once again, online, searching to find others like me. I am now accepting that our shared community might be one of the rarest unicorns out there and this is fueling the fire in my belly to pay attention and explore this. B19's comment about suicide resonates with me. I have been volunteering in the MH field for over 15 years and the charity I now work with is a mental health charity providing services to young adults. My son who lives with ASD was initially diagnosed with depression and anxiety before he was diagnosed on the spectrum. I followed suit and finally sought help for my depression and anxiety while parenting him. It was a major milestone when my therapist suggested that I was likely mildly autistic as well. Over the last year, since diagnosis, my depression and anxiety no longer require medication and I feel more calm and centered than I ever have. Based on my own experience, I too believe that living with autism without understanding this, or being diagnosed later in life likely correlates with mental health issues. This is of significant concern to me. I'm not sure what to do with this yet.
It's just occuring to me while I write that I may be evolving toward feeling angry about this. Initially, while i was raising my son, and I started identifying with much of what I was learning to parent and support my son, I was probably in a stage of denial. This denial then grew into curiousity, then over time, into certainty - confidence that I too shared this neurodiversity. After my diagnosis I felt relieved and affirmed, but now, after slowly letting go of the shame and gaining some clarity to help me process and understand my history through this new and different lens, I am starting to shift into resentment. Resentment that our society doesn't know much about autism in females, let alone late diagnosis in females, which leaves me feeling isolated and lacking the understanding and support from the NT world. Ironic since my entire adult life I've advocated for other communities, minority communities, and vulnerable populations and here I find myself at 50, on the other side, feeling alone and without a voice.
Yes, I think I might be getting a bit angry about this...and sad too.
I'm really glad that I've reached out on this forum and I look forward to connecting with you both as well as others.

J.

P.S.
Are either of you familiar with these or others:
- Bargiela, Sarah et al. “The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype.” Journal of autism and developmental disorders vol. 46,10 (2016): 3281-94. doi:10.1007/s10803-016-2872-8
- Hull, Laura, et al. “Gender Differences in Self-Reported Camouflaging in Autistic and Non-Autistic Adults.” Autism, 2019, p. 136236131986480., doi:10.1177/1362361319864804.
- Lai, Meng-Chuan, et al. “A Behavioral Comparison of Male and Female Adults with High Functioning Autism Spectrum Conditions.” PLoS ONE, vol. 6, no. 6, 2011, doi:10.1371/journal.pone.0020835.

i was able to download full versions of these three studies.

I also found this - https://felicity-house.org/. wow.



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05 Jun 2020, 7:34 pm

welcome jpp ....... must agree with others posts here about older women being a underserved aspie part of the general community . Late diagnosis at 55 yrs.....did nt help . Am in the midwest of the USA . And can echo , what little info exists on older autistic person in general it seems Other than a higher mortality rate due to su icide . But on that matter my searches on the net have yeilded a higher than average rate for that across the entirety of the autistic population , Including a unusually high rate of death by accident. But yet here we are all in all . Also have done a vareity of things , For employment and self employment , including some nursing .. 1 marriage now widowed . Under poor circumstances . But had shared interests .Have flown aircraft over Santa Barbara California . Been in in the field service work in electronics tech field . Founded several businesses now defunct . Lasting over decades . Seems lately am doing alot of health oriented things , Funded a friends career. , when finances were better.
And must admit often wished to travel , New Zealand was lastest dream , but europe held a interest at one time in the more distant past. Nowadays a greater interest in trying to maintain my own health after a apparent life of several close calls healthwise . Am afraid am not so well read on the topic of female autism at 62 yrs but appreciate the titles you all have posted here Thank you.


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jpp
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05 Jun 2020, 7:55 pm

Thank you Jakki for your post.

Do any of you have a female friend who is in your age range on the spectrum?

I don't officially, but I have had a few close women friends in my life who I have confided in about seeking a diagnosis, and a couple of them made a brief comment that they think they might be too.

I feel like after raising a son, and learning everything I had to learn to do so, that I'm somewhat equipped to identify some of the traits in other women. I think a couple of my friends are definitely correct (and they too are on the spectrum) and I think a couple others might be too. This would make sense that I gravitate to these women.

This also reminds me that I work along side a team of graduate student interns who are training to become counsellors. I've learned that they don't receive any learning or training in identifying autism in general, in females, or in middle aged individuals. Why is this?!
Think about how many people go undiagnosed with ASD that are either wrongly diagnosed with a mental illness OR the mentall illness is the symptom of the undiagnosed and untreated ASD.

In 2020, the CDC reported that approximately 1 in 54 children (1 in 144 girls) in the U.S. is diagnosed with an autism spectrum disorder (ASD), according to 2016 data. We know females are underdiagnosed. For the sake of me making a point, let's say 1 in 100 females are on the spectrum although this is likely more. There are about 5M or so women in Canada aged 45 to 64 which means about 50,000 are on the spectrum. Where are we and why don't we have a voice?

B19 I appreciate your views on why this is. Anyone know a list of some leaders in this area - advocates, scientists, etc? If yes, kindly share. much appreciated.



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05 Jun 2020, 8:06 pm

Friends are very few and far , have one younger female friend , who appears quite obviously on the spectrum to me. But even on her best day , it seems clear to me that , she has no interest in any type of diagnosis . Having been somewhat traumatised by a school system that mistakenly put her in a special education class. Which after less than a year they rectified their mistake .But the scar still remains on her mind . She appears quite smart to me.
:)


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B19
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07 Jun 2020, 9:27 pm

I happened to chance upon the announcement of a new journal coming out, which may or may not address genuinely late diagnosis. I say "genuinely" because usually the term "late diagnosis" has nearly always been applied to people diagnosed in their 20s - ignoring anyone older, helping to keep us unrecognised, unseen, undiagnosed, unsupported and misunderstood (whether this is intentional ageism on their part or not, the outcome is the same). One of the people behind the journal is Dora Raymaker, an AS academic (who is AS).

Possibly the journal shown at the side of this article is of the same discriminatory ilk, though one hopes not:

https://www.liebertpub.com/doi/10.1089/aut.2019.0079

PS: the link is worth a gaze anyway, for anyone interested in AS burnout, which I sort of hope most of us are, because there is no vaccine against it happening to any of us....it has certainly happened to me.

Also found a recent book by a professional writer, Tom Cutler, about his experiences as an AS man who was not aware of being AS until in his 50s. https://www.amazon.com/Keep-Clear-my-ad ... 1911617567



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08 Jun 2020, 1:40 am

B19 wrote:
I happened to chance upon the announcement of a new journal coming out, which may or may not address genuinely late diagnosis. I say "genuinely" because usually the term "late diagnosis" has nearly always been applied to people diagnosed in their 20s - ignoring anyone older, helping to keep us unrecognised, unseen, undiagnosed, unsupported and misunderstood (whether this is intentional ageism on their part or not, the outcome is the same). One of the people behind the journal is Dora Raymaker, an AS academic (who is AS).

Possibly the journal shown at the side of this article is of the same discriminatory ilk, though one hopes not:

https://www.liebertpub.com/doi/10.1089/aut.2019.0079

PS: the link is worth a gaze anyway, for anyone interested in AS burnout, which I sort of hope most of us are, because there is no vaccine against it happening to any of us....it has certainly happened to me.

Also found a recent book by a professional writer, Tom Cutler, about his experiences as an AS man who was not aware of being AS until in his 50s. https://www.amazon.com/Keep-Clear-my-ad ... 1911617567

That is an excellent article. I can tell it was a product of autistic effort.


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jpp
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08 Jun 2020, 10:21 am

Hello. Thank you for this report - I'll review it and follow up.
working today... :)



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08 Jun 2020, 3:33 pm

after reading the complete abstract almost , twice over it reads as being a good representation of a
description including many nuances around autistic , burnout .
Thoughtfully written . Their is some correlations from what have studied to a comparable issue
described as chronic fatigue . That many doctors seemed to think was one of my issues due to comorbidities prior to my diagnosis of AS . But upon reading this abstract gives me a new perspective on these past or ? prior issues . As was having problems with this same burn out situation long before , chronic fatigue issues came about . In my best recollection. Concerning my abilities to function throughout All of my Life . And resulting issues that came about due to these issues. (Just my 2 cents worth).
thank you for posting this.


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09 Jun 2020, 6:05 am

Hello from down under!
My circumstances are a little similar, I was diagnosed 2 years ago at 46. I have two teenage kids, a son with autism/Aspergers and a daughter with something else we're still seeking diagnosis of which makes her a bit of a handful.
I work as a geotechnical engineer, have also tried novel-writing during a career break (burn-out, of course). I'd like to get back to novel writing at some point but sticking with my engineering career for now for the stability. Divorced last year after 20 years marriage, so that's been tough.
I don't know any other autistic women in person - we do seem to be a rare species. Yet there must be a lot of us out there, on a global scale, and I do think we have lots to gain by working together towards greater recognition of our existence, issues and needs.



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09 Jun 2020, 9:01 am

MrsPeel wrote:
Hello from down under!
My circumstances are a little similar, I was diagnosed 2 years ago at 46. I have two teenage kids, a son with autism/Aspergers and a daughter with something else we're still seeking diagnosis of which makes her a bit of a handful.
I work as a geotechnical engineer, have also tried novel-writing during a career break (burn-out, of course). I'd like to get back to novel writing at some point but sticking with my engineering career for now for the stability. Divorced last year after 20 years marriage, so that's been tough.
I don't know any other autistic women in person - we do seem to be a rare species. Yet there must be a lot of us out there, on a global scale, and I do think we have lots to gain by working together towards greater recognition of our existence, issues and needs.


welcome Mrs.Peel glad to have you .. and congrats on your diagnosis after all this time . :D


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09 Jun 2020, 6:38 pm

I scanned the research article. Forcing myself to read it word by word was too emotionally traumatizing in the sense that I don't like feeling like a monkey who is being studied by others, even well-meaning others. Parsing whether autistic burn out is the same or different from workplace burnout or depression also feels dismissive of the uniqueness of autistic burnout. I realize this may not be the way others feel about it.

Although there may be mental health issues in some people with autism, the emphasis on mental health seems skewed to me. We are neurologically different. Perhaps our emotional lives are different too? In my experience therapists are dull creatures with limited intelligence and pat answers at best, and sexually and emotionally abusive at worst. I realize many people have been helped by therapy. It is a tool but perhaps not the best tool.

Finding other people with the same experiences and a framework on which to suspend the weirdness of my life experiences has been the most helpful to me. Once the problem or set of problems is identified, it simply (hah!) becomes a matter of finding work arounds.

I am not able to express the level of gratitude I have toward the women on the forum who have shared their life experiences with all of us here.


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Deanne
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17 Jun 2020, 4:13 pm

Can I join you? I've never had anyone to relate to.

I'm 57 and just recently (a couple of weeks ago) talked to a psychologist about a diagnosis. She advised against a full medical diagnosis, but she agreed with me that I am autistic and also added that I probably have ADHD as well. After I got the confirmation I was seeking, now I'm suddenly questioning it and feel like an impostor.

I've been feeling a bit out of sorts lately, but I can't state why, or what I feel. My poor lil' brain is just exhausted by everything and badly needs a break.



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17 Jun 2020, 6:13 pm

Of course you can join us. I don’t think there is a membership requirement. :D :D :D

I have been thinking lately about how I am forgetting more things and having a difficult time keeping all the balls in the air - juggling metaphor. :D

I’m not sure if it is worse now, or if it just feels worse when to do list gets out of hand.

I know what you mean about the brain getting so tired. My brain is really only alert in the morning. Afternoons and evenings have to be for activities that require reduced levels of brain activity.


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