The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype | SpringerLink

The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype | SpringerLink

This is an excellent paper – it’s open access, too.

The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype

Open Access  Original Paper

DOI: 10.1007/s10803-016-2872-8

Cite this article as:
Bargiela, S., Steward, R. & Mandy, W. J Autism Dev Disord (2016). doi:10.1007/s10803-016-2872-8

Abstract

We used Framework Analysis to investigate the female autism phenotype and its impact upon the under-recognition of autism spectrum conditions (ASC) in girls and women. Fourteen women with ASC (aged 22–30 years) diagnosed in late adolescence or adulthood gave in-depth accounts of: ‘pretending to be normal’; of how their gender led various professionals to miss their ASC; and of conflicts between ASC and a traditional feminine identity. Experiences of sexual abuse were widespread in this sample, partially reflecting specific vulnerabilities from being a female with undiagnosed ASC. Training would improve teachers’ and clinicians’ recognition of ASC in females, so that timely identification can mitigate risks and promote wellbeing of girls and women on the autism spectrum.

Keywords

Autism spectrum conditions (ASC)Autism spectrum disorder (ASD)DiagnosisFemale autism phenotype

Read the whole paper at: The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype | SpringerLink

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Why is Autism Missed in Females?

Nice post – covers a lot of territory. I’m not sure I agree with the numbers for Aspergers – I think they would be a lot closer, if people considered girls and women in a different light. But in any case, good information, and a great conversation starter!

The Autistic Womens Empowerment Project

ONE WOMAN WITH AUTISM

This morning The Autistic Women,s Empowerment Project was featured on BBC Radio Wales alongside Doctor Judith Gould discussing the difficulties females face accessing an autism assessment ,many women are being refused a referral because GP’s do not recognise the different presentation of Autism in females due to male biased diagnostic criteria and tests

Females from the community have been raising awareness of this problem for many years .Good to have the media on board at last .

Medicine has for a long time been a male orientated field with most research being conducted on males. Sex differences in many fields are now finally being recognised and the same is true with Autism.

For many years Autism has been considered to be a condition that affects mainly men. The belief that Autism was a male condition has dominated since the early research of Kanner and Asperger which was further endorsed by…

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That was a joke?… Ha ha… Moving on…

woman's face without any features
Who were you again? … Oh, that’s right! Now I remember.

My Aspergers showed up for my presentation to Upper Management yesterday. We’ve been whirling through a massive restructuring at work, and now it’s time to create presentations for Those In Charge, so they can see who is worth keeping and who will be … er… transitioned to a new role/position (external to the company).

The stakes are high, and everyone is on edge… working overtime to look their best, do their best, and make a good impression.

I’m on the “meh…” side of things. Yes, I do need a job. I need the insurance. I need the paycheck. On the other hand, I have the kind of broad and deep skills that can land me a contract job in very short order, and which can even get me a good permanent position, if I want one, without inordinate pain and suffering. I get contacted by recruiters every week, and a lot of them are well-connected in this area.

Plus, I don’t have a lot of emotional investment in the company like many of my coworkers do. A lot of them have been there for more than 10 years — some 20 and 30 years. So, the company is like “their baby”. They helped build it, they’re attached to it. I’ve only been around about a year, and it’s not the be-all-to-end-all to me. I can take it or leave it.

I can stay or go. It’s pretty much the same to me. If they don’t have good sense to keep me, it’s their loss, really. Objectively speaking, I am an asset to them. I’m a great team player, I’m conscientious, I’m hard-working, enthusiastic, positive… and I’ve been coming up with solutions that nobody’s figured out after years of trying. They benefit from having me around — in fact they benefit more from me, than I do from them, in some ways.

So, I’m not sweating it at all.

And that came in handy, yesterday, when I was presenting my magical Powerpoint slide to Upper Management, getting intense scrutiny and having my work criticized and picked apart. It actually wasn’t painful at all. I needed to know ever single weak spot in my presentation, because it’s literally laying out the direction I’ll be taking in the coming year, and I need to get it right. I need it to be relevant and aligned with the overall plan. My Aspergers kicked in, focusing on the objective facts and details of what we were discussing, making it a purely logical experience. And it was good. I came away with some good points.

One thing happened while I was presenting, though, that gave me pause. I was running through my magic bullet points, when someone on the call made a comment about something being wrong. I thought they were being serious, and I started to address that as a real issue, launching into my detailed explanation of why it was the way it was. Then the person who made the comment told me, “That was actually a joke.” And I had to pause for a few moments to figure out what was funny about it, what the context was, and how the heck I was supposed to react to it.

After fumbling around for a few minutes, I finally gave up. “Oh, that was a joke — Ha ha –” I said. “Moving on…”

And I finished my presentation in good shape. The beauty part is, I didn’t get completely thrown by everything. I just took it in stride and moved on. My Royal Aspie-ness was in high gear, yesterday, as I completely blanked on recognizing the face of a Vice President I knew and passed in the hallway. She had to say “Hi!” to me, before I realized I knew here, and it took me a minute to remember who she was. I felt a little bad about not recognizing her straightaway, but what can you do? I’m hoping she just thought I was deep in thought, and not avoiding her… although I have to admit I often try to avoid looking at people, especially women, because I don’t always know how to read their expressions or figure out how to respond. Men are easier to interact with. Much more straightforward.

Anyway, yesterday was a special edition of Bring-Your-Aspergers-to-Work-Day for me. And yeah, when it shows up, sometimes the best I can do is say “Oh, so that’s what that was… Moving on…”

And not waste time feeling bad about it. That would be a poor use of time.

 


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Are neurodivergent people actually in the minority?

This is absolutely true. We are vastly under-reported, vastly under-estimated, vastly under-represented in every aspect of life and the public conversation. And that’s for a reason. Because stepping out, means — for many of us — stepping off a cliff. And we like being able to live our lives.

Michelle Sutton

Neurodivergence is “having a brain that functions in ways that diverge significantly from the dominant societal standards of “normal.”” (quote from Nick Walker’s blog)

That does not mean that to be neurodivergent is uncommon, just that the dominant societal stand of normal is different than what you are.

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Sharing: I was diagnosed with autism in my 40s. It’s not just a male condition by Nicola Clark

woman's face in bricks, staring straight ahead
Women who seek diagnosis often hit a proverbial brick wall. Or clinicians can’t decipher our expressions, so they treat us like we ARE a brick wall.

Such a great article – and better yet, it’s been published in The Guardian. So, great visibility. We need more voices like this – loud and clear.

Last year, in my late 40s, I was diagnosed with autism. I’ve always known I was different, and sought a formal diagnosis after the traits I’ve lived with for almost five decades became progressively more difficult to manage.

I’m certainly not the only woman who has had to wait a long time for a diagnosis. The National Autistic Society (NAS) is calling for doctors to have a better understanding of how gender differences affect autism, and to recognise that women and girls have been historically under-diagnosed.

In its 2012 survey of more than 8,000 autistic people and family members in the UK, the NAS found that women and girls were more likely to be misdiagnosed than men and boys (41% of females had been diagnosed with another condition on assessment, compared to 30% of males). And once they were diagnosed, women and girls were less likely to access extra support. In cases of Asperger syndrome, only 8% of girls were diagnosed before they had reached the age of six, compared to 25% of boys; and only 20% of girls were diagnosed by the age of 11, compared to 50% of boys. Many women remain undiagnosed until their 20s or 30s.

From an early age, I was fascinated with the way things worked and happiest reading books and being on my own. Playing with groups of other children was always disastrous. I also had sensory problems and an over-sensitivity. Labels in clothes, unexpected noises, strong smells and dirt and germs would stop me in my tracks.

When we were considering our O-level choices, my biology teacher suggested I pursue a career in medicine, but all I could focus on as she spoke was the smell of the lab and the alarming appearance of the locusts in formaldehyde. I couldn’t bear it, so I chose drama school instead. I’d spent my life training to be other people, watching and learning, surmising how to fit in, so I loved this experience.

I needed other people to explain to me the mysteries of human behaviour. My brother Michael, who died when I was 12, was one of these people; my mother, my rock, was another. As an adult, when both my daughters were diagnosed as autistic, I wondered if my eccentricities were similar to theirs, but life was so busy caring for them and my mother, who had Alzheimer’s, that there was no time to question it.

Read the full article here –>

Or… you just deal with it

crane surrounded by cement construction blocks
There can be a lot to do, so sometimes you just gotta do it.

I had a really great conversation with one of my sisters, yesterday. She’s not my biological sister (I hate saying she’s “adopted”), but she’s been a huge part of my family since I was 12 years old. That’s, oh, about 40 years.

She did me a huge favor by writing up a brief “summary” of my personality, strengths, and challenges, for when I did my autism assessment, and we were talking about the stuff she put in there, as well as talking about her own challenges and the issues her kids face.

Now, I actually didn’t tell her about the autism diagnosis. She’s really opposed to labeling people, and when I’ve tried to discuss other issues I’ve got with her, she’d gotten pretty upset at the implications of my “issues”. Basically, her opinion is that everybody’s got challenges and issues, and we need to simply take life as it is, without relying on doctors to tell us every last thing, and do the best with what we have.

I learned a lot from her, yesterday, including the fact that one of my extended family members has a reading disability. She’s had it her entire life, and she got special education for it, but it never actually “got fixed”. This is news to me. And it also explains a lot about why that particular family member never went farther with her education. She just can’t connect what she reads with verbal expressions of it. And if you ask her what she just read 2 minutes ago, she can’t articulate it.

But she’s still gotten on with her life. She has a gorgeous toddler, a great husband, and she loves her work with elderly folks in a nursing home. I suspect, in fact, that her own learning issues help her to relate to the people she works with.

And it struck me, how the attitude in the rural area where my sister lives is so very different from the attitudes of the urban/suburban area I live in. Here, there’d be all sorts of interventions, all sorts of resources available to help address the issues and ensure access to assistance. But where my sister lives, you just accept those sorts of things as part of life, and you get on with it. You live your life. You join a community of worship. You get a job. You do your best. You have family and friends to place you in your space and add meaning and purpose to your life. You get on with it.

Because frankly, there are not a whole lot of competent experts in that area who can provide kick-ass remediation and support for people with special needs. At the same time, there are myriad people there who have all sorts of variations on abilities, many of them impaired in significant ways (social, learning disabilities, physical problems), but still required to contribute to society as fully functioning adults.

So, you don’t spend a lot of time making inventories of your issues. Instead, you just get on with it.

I think maybe that’s why my sister isn’t fond of labels. Because of the dearth of experts in her area who could actually do something substantive. And also because she’s part of a tradition that doesn’t get hung up on labels and categorizations, but sees people in much more basic terms — asshole or not-asshole… good provider or deadbeat… productive worker or lazy, cheating slacker. And so forth.

For me, I see the benefit of both perspectives. But in those times when I’m feeling so beset by life, and I can’t even begin to articulate what’s going on with me to anyone around me — especially intimidating experts — I default back to the way I was raised.

I get on with it

.


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Welcome Letter to Freshly Minted Autistics – now in paperback

When I wrote Welcome to our world – now it’s your world, too, there was a whole lot of positive response. And I thought it would be kind of cool to have a paperback book version of it. It might be something that people can give to their loved-ones who have just been diagnosed, or it could be a gift for someone who’s just realized they’re on the autism spectrum.

I’m a big fan of books – they’re tangible, tactile, and they don’t need to be booted up, upgraded, or shut down when you’re done with them.

So, I went ahead and converted the post into a little pocket book and made it available here

Welcome to Our World – Now It’s Your World, Too

By Visual Vox

Paperback: 48 Pages – with pages in the back for personal notes
Dimensions (inches): 4.25 wide x 6.88 tall
Price: $2.95
Prints in 3-5 business days

Welcome to Our World - Now It's Your World, Too

Book Description:
Realizing you’re on the autism spectrum can be both exciting and confusing. Many of us feel elated at discovering there is an actual reason for how we feel. For many of us it’s very exciting.
At the same time, so much is said about Aspergers Syndrome and autism, and a lot of it is inaccurate or driven by fear and misinformation.
How can you know what lies ahead of you? How can you figure out how to live your life the best way, with all this new information?
This book is written by a woman on the autism spectrum who realized she’s “a total Aspie” in February of 1998. This is her personal message to newcomers to the spectrum – words of hope, words of warning, and always – always – words of encouragement.
If you are new to the autism spectrum (officially assessed or self-diagnosed), or someone you love is seeking answers or newly diagnosed, this book is for you. It’s for them. It’s for all of us.

Of course, the original post is still up there. It will stay there. I just thought it might be nice to have a book version, as well.

Sharing: Autistic Aloneness: When Coping Mechanisms Go Bad | Psychology Today

Navigating in the “normal” world, for a person with Asperger’s, can be difficult, if not downright painful.  The most difficult area for me to handle, personally, is rejection.  While some people with autism or Asperger’s report a reduced desire for human attachment, the reality for many of us is to want it very much, but struggle to achieve it. 

Researchers often call this difficulty to connect with others “autistic aloneness.” Like many people like me, I have learned to mimic social behavior well enough to get along.  I work, have friends, and social relationships…but the real issue comes when things get beyond superficial.  When the very coping mechanisms that get us through surface interactions, not only fail, but cause additional problems.

Read the rest at https://www.psychologytoday.com/blog/aspergers-diary/200805/autistic-aloneness-when-coping-mechanisms-go-bad

Giving Patreon a try

Header for VisualVox Patreon page, showing a girl looking at a sunset across a lake
My Patreon page header

I’m a huge believer that culture doesn’t create itself… and that part of the reason our world has been sliding towards oblivion is the monopoly of culture creation by the military-industrial-entertainment complex, combined with the utter unwillingness of people to think for themselves.

I’m not an anti-corporate campaigner, as I have almost always worked for Fortune-500-type companies and their ilk, but when it comes to the creation of our arts and letters, I’m not a big fan of conglomerates throwing their weight around, and the lionization of pre-packaged, homogenized “arts and letters”.

I have also been involved in lots of alternative culture activities, including community gatherings & ceremonies, organized grass-roots community events, and tons and tons of get-togethers with like-minded folks who are most definitely on the fringe. And I’ve seen, countless times, how the event producers and organizers, as well as other types of sponsors can lose their proverbial $hirt$ in the process of creating cultural events.

If we want a different world, we need to create it ourselves. And if we’re creating it, we need to be supported. We need to support ourselves — and each other — in making the kind of world we really want to inhabit.

Patreon seems to have found a way to help make that happen. I just joined up this past week, and I just launched my page – https://www.patreon.com/VisualVox

I’ll be posting there, as well as here, about what it’s like to be a woman on the autism spectrum… and I’ll be creating additional materials there for folks who wish to support me. I won’t be short-changing this blog, just expanding on some of the ideas over at my Patreon space for those who wish to “patreonize” me.

This should be interesting. We’ll see how it goes.

A More Forgiving Lens

What a great post. I can relate to so much of this.

Near-Earth Object

I have never felt like I belonged in this species. I resembled a human, and I could force myself to awkwardly ape the basic mannerisms of people, but I would always suspect that there was something alien about me, and that everyone else suspected (or knew) the same thing.

A lot of this alienation is in regard to my relationship to and interactions with other people. I’m a pretty severe introvert, that’s no secret. Being around people, even those I love and feel most comfortable with, utterly exhausts me. But I’ve always felt that there was more to it than mere introversion. For as long as I can remember, I’ve struggled to relate to almost anyone, unable to comprehend others’ values, aspirations, needs, obsessions, or subtexts.

As a result, I’ve been at a loss as to how to blend, to appear as though I do understand, or at the very least to keep…

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