The hidden wave of women with undiagnosed Asperger’s Syndrome.

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If you’re a woman who feels that you don’t ‘fit in’ with those around you….

Or that you have always been, somehow, just that little bit different to everybody else…

Or that you never seem to see things the way others do….

Never seem to find the right words…

Or know instinctively the right social cues to follow at any given time….

Or you’re a shy, introvert who loves her family and seeks little experience from the outside world…

Or even if you simply feel, as if you are an actress, caught somehow on the outside of your own life….

Always looking in, but rarely truly, outwardly taking part……

Then chances are you’re not likely to admit it out loud to anyone, for fear of being thought of as strange, depressive or delusional.

As women, we’re encouraged not to express our discontentment at the world.

That to do so would mark us out as maladaptive in some spectacularly, psychologically, disturbing way.

We’ve been told for so long that we’re not allowed to admit to feeling socially awkward, shy or simply genuinely disinterested in the pantomime of other people’s lives as they go on all around us, that in order to cope some of us have chosen instead to pretend.

To mimic that which we’re told we should say, be and do.

Which is fine for a while…… but only a while….

Eventually, those of us who genuinely feel as if we don’t ‘fit in’ or that we are ‘different’ in some unknown way to everybody else, will head off in search of answers.

For an increasing number of women, those answers are being found within the growing body of knowledge surrounding the way in which Asperger’s Syndrome presents in women and girls.

More and more women are, if not self-identifying with Asperger’s, then at the very least beginning to question whether or not their quirks and unconventional character traits, (which in the past would never have been spoken of and hidden away), are consistent with the presentation of Asperger’s Syndrome in women.

Yet even throughout this process of questioning the self, which for many can become an outright mission to find the answers that have eluded them, women who  suspect that they may be Aspies, are still experiencing a severe lack of understanding and acceptance from those who are the professionals in the field.

Women in their waves, are now crashing up against the harshness of psychologists, whose glory days are so far away from the realities of the here and now, that they are unable to turn their gaze away from the hazy thinking of the past, long enough to truly listen and engage with what it is that the women of today have to say.

Let alone even begin to understand why they are saying it.

As a consequence of this, many women are either being turned away and denied a diagnosis or worse still, being misdiagnosed with some errant version of a personality disorder, by those who should know better, yet still remain unable to refrain from placing the blame of every woman’s “affliction” on some variant of depression.

The damage this form invalidation is causing to a subset of women, who have already lived at least half of their lives, feeling so out-of-place that they’ve had to hide who they really are and what they really feel, is immeasurable.

Yet despite this onslaught of diagnostic invalidation, women with undiagnosed Asperger’s are not going away.

Instead they are taking to forums, forming alliances and sharing their all too familiar stories, with each other.

And the more they share, they more they are becoming aware that they are not alone.

That this is happening to women everywhere, from every variant of socio-economic background, culture and region.

There is a wave of officially undiagnosed women with Asperger’s Syndrome out there, treading water, not too far from shore, just waiting their turn and sooner or later, they will land.

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25 thoughts on “The hidden wave of women with undiagnosed Asperger’s Syndrome.

  1. Wonderfully presented, beautifully written and extremely comprehensive article (and heartbreakingly beautiful photograph too). Something about the way you write grabs me instantly. Thank you so much for sharing all your invaluable information.
    Since my daughter’s diagnosis I have come to question my own problems in a different light. Not seeking to ‘find the devil in every room’ yet, and I share it here very tentatively, realising that this is a public forum, the woman you describe in this article could be me. It answers a lot of questions. And I could weep, because I’ve thought it for a very long time.
    However, what to do? I continue to fight and advocate for my daughter.
    Thank you Seventh for bringing this hugely important issue to light, as you say, how much longer can it be denied by the so called professionals, that there are many grown women out there with Asperger’s but not even being considered for diagnosis?
    You are such a blessing to me.

  2. This was a beautifully written piece which made me think about the issue in a thorough and sympathetic manner. My heart goes out to people afflicted with any social malaise which goes untreated and unrecognised, To have to live in this social twilight is a horrible thought

  3. This is precisely why I haven’t even sought the validation of a diagnosis. The fear of being misdiagnosed, again. While it would be better to have a diagnosis and resources, I am focusing on finding coping skills and resources on my own. (with the help of some lovely bloggers 😉 )

    1. Many women feel the same way Renee… and it’s sad that sometimes we are forced to choose the lesser of two evils so to speak when it come to deciding whether or not to seek a diagnosis….. You are clearly doing what’s right for you and I think that’s a wonderful thing to do 🙂

  4. I am, and have always been, strange/different/alien/freaky.
    I live on Planet Aspie, but did not know it until recent years.

    I returned to college in January 2013. This is my 6th attempt at tertiary education, and I MUST be crazy to put myself through this again. Now, don’t get me wrong, I’m smart and I love the programme I’m in… Special Education/Education Assistant/Support Worker. I’ve always loved learning. And I’ve always FAILED.

    I started college in January, knowing that I had an appointment in March for ASD and Educational evaluation. I kept the date firmly in mind as a talisman of hope as I struggled yet again with the college environment. I don’t think I would have made it through 1st semester, otherwise. I finally have the answers and tools I need to succeed in life.

    I am 41 years old and I received my Dx in March 2013: I am an Aspie, as suspected, but testing also revealed that I have Sensory Integration/Processing Disorder (SIP-D), Central Auditory Processing Disorder (CAP-D), and a ‘Disability of Written Expression’ (dysgraphia).

    Resulting from my Dx, the college has funded assistive technology for me. I now have a laptop with Dragon, Kurzweil, and Livescribe programmes for use in class and at home. My CAP-D is so pronounced that in order to learn some of my course material, I use a video camera in addition to my Livescribe digital pen (which records audio). I am a visual learner. I LOVE PowerPoint in class!

    I have to spend time organising my digital notes (audio, video, & photo-scribed written notes), but I spend so much less time organising, studying, and writing, than before my Dx. Then, my dysgraphia made all homework and assignments endlessly painful. I can now work at the speed of my mind. My (invisible) disabilities no longer hold me back. I have learned to advocate for myself, now that I know what I need!

    And best of all, I am setting a great example for my son (16-years old) and my daughter (14-years old); they are Aspies too. They will be prepared to live as Adult Aspies because I’m showing them the way.

    1. Which country are you in. I am dx but need more thorough assessment as am going back to uni and my brain works similar to yours. Took 10 years to do 3 year degree! On and off and repeating one class 6 Times, didn’t hand any work in.

  5. I am 50 years old and have felt like most of the list above. After being diagnosed with borderline personality disorder, anxiety and depression and being in treatment which didn’t work for the last 5 years and being put on drugs I was discharged and told I had to put up with life and that I wasn’t trying hard enough – to join groups and change my life. Finally my GP got me seen by a practitioner for cbt who knew of the Autism specialists and immediately said she thought that I was on the spectrum After meeting them about 8 months ago and joining their support group I finally received a diagnosis of Aspergers just 4 weeks ago. It’s a relief to finally have the right diagnosis and feel like I fit in and also a challenge to learn who I am and to be able to let go of all the things I shouldn’t feel and accept myself as I am. I am a work in progress but at least I am now on the journey.
    thank you for this article – I am now passionately trying to get this message out there.

    1. Thank you for sharing your powerful journey Adele.

      It’s really hard for me to express the strange mixture of sadness, relief and anger that I feel every time I read of another brave woman who’s finally been correctly diagnosed with Asperger’s after years of enduring suffering and pain due to misdiagnosis and misunderstandings.

      When will women with Autism stop being subjected to such high levels of negation when it comes to the accurate diagnosis and understanding of females with Asperger’s?

      Why should so many have to suffer through so much simply because all previous knowledge of Autism was based on the false premise that only males may experience it?

      Thank you once again Adele.

  6. Tell the women, indeed tell all the undiagnosed: you should link up witn the aspie scene, the national aspie scene online e,g. Aspie Village is always there whether or not you have anything local, link up with us FIRST, from your undiagnosed position. Only after that go for diagnosis, when you have aspie society’s support in thinking you are aspie and the psychologist has to explain that.

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