Asperger’s Syndrome’s missing trait

best-life-quote_325404-4 There are many websites, blogs and books that provide lists of traits that are purportedly said to be the common signs of Asperger’s Syndrome in Females.

However, each and every one of these lists has a tendency to focus exclusively on the outward signs of Asperger’s Syndrome in women.

Signs like:

‘difficulties with social interaction’,

‘dislike of small talk’,

‘poor co-ordination’,

‘fixation on special interests’,

‘preference for spending time alone’

I‘m sure by now we are all nauseatingly familiar with the above list of symptoms.

Perhaps we’ve even become so familiar with these lists that we’ve stopped looking for the traits that have been missed.

Well here’s a trait that continues to remain unlisted, although I cannot for the life of me understand why this should be so, as it is a trait that has been mentioned over and over again, by every woman with Asperger’s Syndrome that I’ve ever communicated with.

In fact, it may even be the one trait that is common to every woman with Asperger’s Syndrome.

And that trait is:

The early personal recognition, awareness or sensation that they feel, think and perceive the world differently to those around them.

                “I can’t remember a time when I didn’t feel different to everyone else”.

                “I’m pretty sure I was born different. No two ways about that.”

                “Different is something I’ve always been.”

                “I must have been the oddest child on earth. I know I certainly felt that way.”

“Evan as a kid, I felt, I don’t know, just different to my sisters and brothers.”

Given that this sense of personal awareness occurs long before the outward signs of Asperger’s Syndrome appear, it is perfectly logical to hypothesize that the early onset of this awareness may indeed be the exact reason why the outward signs of Asperger’s first appear to others.

“I didn’t like doing the same things that kids my age did, so I used to just go off and do my own thing.”

“I could never understand why other girls wanted to play with dolls. Dolls were boring to me.”

I believe that  this early personal sense of ‘not fitting in’ or of ‘not belonging’ within one’s own family, peer group or circle of friends, needs to be considered as one of the fundamental indicators of Asperger’s Syndrome or High Functioning Autism in females.

It therefore strikes me as extremely odd that researchers, psychologists and other related professionals’ continue to ignore the one experience that, so far, appears to be common to all AS Women, and instead focus on ideas such as ‘masking’.

Imagine how many girls could be helped if all it took to recognize their potential for being on the spectrum entailed the asking of just one simple question.

Do you ever feel different?

Does this post ring true to you?

Have you always felt different?

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Are Women with Autism evading diagnosis?

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“In the absence of significant intellectual or behavioral problems, girls with ASD-like traits are more likely than boys to evade a diagnosis of ASD.” Spectrum.

Academics, researchers and professionals’ need to stop using terms such as “evading diagnosis” and “masking symptoms” when discussing female Autism.

In essence, what they’re really discussing when they apply terms such as these, are their own inabilities to correctly identify Autism in women.

There is absolutely no value to be found in perpetuating the myth that women with Autism run around wilfully trying to avoid detection simply because professionals have become lackluster within the confines of  their own diagnostic processes.

As a woman with Autism I can tell you that we are not running around trying to avoid detection.

Nor are we, in our daily lives, actively striving to “evade” diagnosis.

In fact, we’d actually quite like it if all professionals developed the ability to recognize female Autism in girls sooner, faster, more adeptly and at a much younger age than say, oh I don’t know, 40.

Perhaps then, the facts that girls and women with Autism experience as many sensory and processing difficulties throughout their lives as boys and men with Autism do, can be openly acknowledged and understood by all.

Perhaps then, there wouldn’t be so many undiagnosed women trying to desperately figure out why they’ve always felt so awkward around other people and berating themselves for being so different.

Perhaps then, we’d also have seen more changes within the diagnostic process had the discussions surrounding female Autism focused less on our techniques of supposed evasion, and more on the inabilities of professional’s to accurately detect and diagnose female Autism in the first place.

No amount of double talk should detract us from the fact that improvements for women with Autism will only occur once the flaws in the area of diagnostic accuracy have been addressed.

Especially considering that we can’t technically diagnose ourselves, regardless of how thoroughly we research Autism or how deeply we ponder the prospect.

The only option left to us, it would seem, is to strive to change the parameters under which knowledge pertaining to Female Autism is currently being collected and constructed.

So it’s up to us to point academic researchers in the right direction when it comes to female Autism because apparently if we don’t, they’ll simply all keep listening to each-others bad ideas and encouraging each-other to see traits that aren’t really there whilst continuing to ignore those traits which really are.

This is a somewhat ironic state of affairs considering that we’re the ones who are supposed to lack the ability to see the bigger picture.

We’re also supposed to lack the capacity for self-awareness, yet all a researcher really needs to do these days, is type in the search terms ‘female + Autism + Blog’ and they’ll soon have all the evidence they need to confirm that we are indeed an extremely self-aware bunch.

 

The darker side of the diagnostic process for Women with Autism

Vicki Cooper

Older, undiagnosed, women, frequently find that their families / friends have fallen into the habit of viewing their differences in particularly negative and unflattering ways that detract from their ability to view themselves as potentially Autistic.

They often experience the indignity of hearing family members, both young and old, refer to them as “lazy”, “weird”, “odd’, “anti-social”, “hard to get along with”, “overly sensitive”, “moody” and “unreasonable” people.

The impacts of being viewed in this way, by the very people who are meant to love and accept you, cannot be discounted.

Especially since these impacts often serve only to further confuse those women who already sense that are ‘different’ from others, yet hold no explanation as to why or how this should be so.

Being continuously discredited in such a way by their family, not only undermines an undiagnosed Autistic woman’s self-confidence, but it also makes it harder for her to believe that there may be a legitimate reason for her experience of ‘difference’.

As a result, many undiagnosed women describe the sensation of ‘teetering of the edge” of self-awareness and acceptance, yet, still never quite being able to commit fully to the belief that they may be different for any reasons, other than the ever burgeoning list of negatives they’ve become accustomed to hearing.

For this reason, many undiagnosed women, quite literally feel that they require a formal diagnosis in order for their family and friends to  accept that their “odd” behaviors are the result of sensory and processing differences and not the result of a wilfully lazy, or ignorant mind.

And therein lies the rub.

When a woman who’s not only perceived herself as being different in some unknown, unnamed kind of way her entire life, but has also received multiple negative messages from those around her for those differences, becomes brave enough to ask to be assessed for Autism, she is often confronted with a yet another litany of negative messages.

Even the term “seeking a diagnosis” which is very similar to another term also applied to women, “attention seeking”, makes it sound as if women are going out of their ways to “seek” a diagnosis.

Yet often the truth of the matter is that women are not doing this.

They are seeking answers and they do so usually, only after months, or even years of contemplation and research.

Most women are therefore aware of the fact that they may be Autistic long before they contact a psychologist.

Yet despite their high levels of self-awareness and Autism related knowledge, they find that form the very moment they sit in front of a psychologist and state that they “feel different to everyone else,” they are confronted with a pre-ordained set of red flags that go up in a psychologists mind, upon hearing those very words.

To this end, most psychologists will settle into the task, not of assessing these women for Autism, but of looking for any signs that the women concerned may be mentally ill, delusional, attention seekers.

Now let’s just stop and consider that last sentence for a minute and ask ourselves why it should be that any woman, upon requesting an assessment for Autism, should first find herself in the predicament of having to address a psychologists immediate concerns that she may be mentally ill, before any Autism assessment can take place.

There seems to be something wrong with a diagnostic process in which the first step serves to scare, intimidate or cause doubt in the minds of women, due to the fact that it often reinforces all of the negative ideations they’ve grow accustomed to hearing about themselves from their families.

For this reason, some women will become consumed with either fear or self-doubt and choose to end the diagnostic process before it’s even begun.

Those who continue on, do so under the weight of the understanding that, regardless of whether or not they are found to have Autism, they will most likely to be labelled with something, simply by virtue of the fact that they are continuing on within a diagnostic process that is designed to find something amiss.

The practice of conducting Autism assessments in such a manner may also explain why there are currently so many different, co-occurring psychological conditions, associated with Autism.

If we note the precarious position that any woman is placed in when “seeking” an Autism assessment, and add this to the already well-established past propensity of psychologists to either miss of dismiss, the signs and symptoms of Autism in women, we can begin to see why many formally undiagnosed Autistic women view the diagnostic process as being far more fraught with potential hazards than with potential answers.

Hence, undiagnosed Autistic women, often find themselves situated between a rock and a hard place, as they often urgently require the validity of a diagnosis in order for their family and friends to take their concerns, feelings and experiences seriously.

Yet, in order to attain that diagnosis, they must willingly submit themselves to the critical gaze of a psychologist, whose first point of call is to assess, not whether they have Autism, but whether or not they are mentally ill.

Is this fair?

Definitely not.

Yet this is the way it is for adults, especially women, who wish to be assessed for Autism.

And unfortunately it gets worse.

Within the diagnostic process the psychologist holds all of the power.

Psychologists are human beings, and just like the rest of us; they go about their days complete with their own sets of values, beliefs, likes and dislikes, skills and flaws.

So whilst they may be certified to practice, that certification in and of itself, holds no guarantee what so ever, as to whether or not they are up to date with current studies regarding female Autism, or even whether or not they are ethical human beings.

The idea of trusting a complete stranger becomes even more of an issue for women wishing to be assessed for Autism as they too often find themselves in the un-enviable position of being forced to entrust their most vulnerable selves to a person of whom they hold no understanding or awareness, beyond the context of office walls.

This is no mean feat.

Especially considering that clients (female and male) do not find out whether or not that trust has been misplaced until after all of the assessments have been carried out.

It is only at the end of the diagnostic process, once all the fees have been charged and the bills paid, that a woman may discover whether or not her diagnostic trust has been well placed.

If it has been well placed, then a diagnosis of Autism may be given.

Should it transpire that a diagnosis of Autism be considered unwarranted, then there will be no further diagnostic decision made about any woman, without the express consent of the woman concerned.

If a woman’s trust has been misplaced, then the ramifications and consequences of being misdiagnosed with a condition that not only exasperates her difficulties, but further encourages others to dismiss her, may prove disastrous.

And still, even in some situations where a diagnosis of Autism is given, a woman may still find herself in the situation of having inappropriate and/or highly personal information about herself, divulged to third parties without their consent, due to an overall lack of ethical practice on the part of the psychologist.

The diagnostic process may not be for everyone, but for those who need or want to pursue it, it’s best to go into it with eyes wide open.

Completely aware that despite the many improvements that have occurred regarding  our understandings of Women with Autism, there are never, ever, any guarantees.

Asperger Syndrome in Females: An Underdiagnosed Population

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Asperger syndrome (AS) is an Autism Spectrum Disorder (ASD) characterized by significant impairments in social interaction, and rigid, stereotypical, or repetitive behaviours that exist alongside normal language and cognitive skills (Fitzgerald & Corvin, 2001). Researchers often use the terms Asperger syndrome and high-functioning autism interchangeably (Attwood, 2006), and so for the purposes of this paper, Asperger syndrome will encompass both diagnoses, and assume an IQ in the normal range, i.e., > 70. The ratio of males to females with AS is currently about 10:1, and on average, boys are referred ten times more often for diagnostic assessment (Wagner, 2006). Overall, the lack of knowledge about girls and women with AS is mirrored by a relatively small amount of empirical research dedicated to this population (Thompson, Caruso, & Ellerbeck, 2003). Much of the available literature includes clinical observations, case studies, and anecdotal evidence.

Some feel that the uneven gender ratio is a natural reflection of biological sex differences. Jones, Skinner, Friez, Schwartz, and Stevenson (2008) propose a sex-linked genetic cause, and argue that the single X chromosome in males is inherently vulnerable, creating a lower threshold of susceptibility to AS. Alternatively, Baron-Cohen and Wheelwright (2004) hypothesize that gender differences in brain specialization may explain the male-dominated ratio, and contend that while females are naturally better at empathizing, males tend to think in a systemizing way. They conceptualize Asperger syndrome as an extreme systemizing form of the normal male brain that may develop due to high levels of testosterone exposure in utero. The question arises, however, as to what extent sex differences are biological, or influenced by sociocultural factors.

In contrast to the researchers that find support for the current gender ratio, many believe it is inaccurate (e.g., Attwood, 2006; Rastam, 2008). Thompson et al. (2003) claim that a long-standing sex bias in AS research has resulted in diagnostic criteria too dependent on a male prototype, and point out that 80% of all ASD study samples have been male, on average. They suggest further that our present knowledge about ASD is actually knowledge about males with ASD. Nyden, Hjelmquist, and Gillberg (2000) highlight comparable issues in the diagnostic criteria for Attention Deficit Hyperactivity Disorder (ADHD), while Rastam (2008) parallels the development of criteria for clinical eating disorders, based largely on the signs and symptoms prevalent in females. Hully and Lamar (2006) suggest that overdependence on a male prototype means that traits in females must appear exaggerated for diagnosis. Ironically, researchers are finding it difficult to obtain samples on females that are large enough to allow for comparison by sex (Hartley & Sikora, 2009). This paper will explore how psychiatric disorders may mask AS in females, gender differences in phenotypic expression that can cause diagnostic confusion, and the attitudes and behaviour of others toward females with AS that can contribute to a missed diagnosis.

Several disorders have the potential to overshadow Asperger syndrome in females including depression, ADHD and Anorexia Nervosa (AN) (Hartley & Sikora, 2009; Rastam, 2008; Ryden & Bejolet, 2008). Researchers feel that the risk of misinterpreting signs and symptoms is strong, and could lead to misdiagnosis, or failure to recognize AS as the primary disorder (Cooper & Hanstock, 2009; Ryden & Bejolet, 2008). Hully and Lamar (2006) observed that as girls grow older, the presenting problem is less often associated with a developmental disorder, and stress that clinicians must take a detailed patient history to rule out AS in females. Accordingly, Ryden and Bejolet (2008) found that adult women with AS comprised a large portion of the psychiatric outpatients that they studied (39 females and 44 males), and speculate that many females do not receive an accurate diagnosis until they seek treatment for a comorbid disorder.

Although the gender ratio for childhood depression is 1:1 in the general population, by adolescence, females are three times more likely to receive a diagnosis of depression (Cooper & Hanstock, 2009). In fact, Ryden and Bejolet (2008) found a history of depression most often in patients that had not received a diagnosis of AS until adulthood. This could underscore a lack of awareness of how Asperger syndrome looks at different ages, and in females. Symptoms that often cause diagnostic confusion include a flat affect, minimal facial expressions, flat intonation in speech, irritability, and social isolation (Cooper & Hanstock, 2009). Hartley and Sikora (2009) found that girls with ASD, as young as 1.5 years of age, displayed an anxious or depressed affect more often, which lends support to this idea. In addition, Cooper and Hanstock (2009) discovered that Jane, initially referred for confirmation of a mood disorder, had a stable baseline mood over a long period. They concluded that failure to recognize significant social impairments, along with a flat affect and monotone voice, a number of school changes, and normal IQ and language skills, resulted in a misdiagnosis of depression.

Holtmann et al. (2007) found that females, across the entire sample that they studied, had significantly more attention difficulties than males, and similarly, Nyden et al. (2000) established that girls, aged 8 to 12 years, had greater impairment on the Freedom from Distractibility subscale than boys in the same age range. Greater attention difficulties in girls and women suggest that a misdiagnosis of ADHD may occur more often in this population. In accordance with this, Ryden and Bejolet (2008) assert that the lack of common sense and social disinhibition inherent in AS could be mistaken for impulsiveness, further increasing the likelihood of an incorrect ADHD diagnosis.

Ryden and Bejolet (2008) also discovered that adult female patients with Asperger syndrome scored higher on scales measuring borderline and passive aggressive traits, and mood instability, despite presenting with the same core AS features as males. Holtmann et al. (2007) uncovered a similar trend in their analysis of a matched subgroup of males and females.

Although core impairments were also equal in both genders, girls scored higher on scales measuring peer relationship impairments, social immaturity and dependency, as well as compulsive and bizarre behaviour, with older females scoring the highest. Similarly, Cooper and Hanstock (2009) found that Jane’s social impairments and deviance from her peers were more obvious as she grew older.

These findings suggest that if a clinician fails to notice a girl’s severe social difficulties in childhood, the result could be an incorrect diagnosis of BPD later on. Likewise, Ryden and Bejolet (2008) state that undetected AS might exist in a subgroup of older females diagnosed with BPD, which further emphasizes the importance of taking a detailed patient history when considering diagnosis. In addition, they stress that concepts of personality disorder and abnormal personality traits are difficult to separate in Asperger syndrome, and propose that a different model is needed to explain “odd personality” in this population.
Written by A. MacMillan

Yes – Asperger’s may present differently in women – but…

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I’m still not sure what to make of this notion (now being presented to us as an absolute fact), that women with Autism/Asperger’s Syndrome are being diagnosed less frequently, due to their apparently inherent ability to ‘mask’ their symptoms by ‘mimicking’ those around them.

There are just too many assumptions hidden within this concept that have not been deeply analyzed enough for my liking.

It almost seems like once again, we as women, are being told to turn a blind eye to any and all personal experiences that do not match up succinctly to the now, almost biblical accounts being written by psychologists, as to how women with Autism should present.

Accounts that not only seek to define our presentation, but come complete with a rationale as to why our supposedly ‘hard to spot’ tendencies have, for so long been so tricky, that it’s entirely understandable, and therefore forgivable, that we’ve been over-looked by the very profession that has at last finally deemed us worthy of recognition.

Call me a cynic, but I can’t help but feel that there’s something a little too psychologically tidy and self-serving lurking somewhere beneath the surface of all this.

Yes, Asperger’s may present differently in women, but just how differently and why those differences occur, are issues that I believe should still be up for debate.

As it stands at the moment, there are women in their 60’s who are now finally being diagnosed with Autism after living through decades of feeling disconnected and different, rejected and misunderstood by their families and enduring years of being misdiagnosed by professionals.

So how can it be that the same professionals, who have clearly recognized the level of difference, disconnect and/or difficulties with sociability that these women experienced, at least enough to have diagnosed them with depression, bipolar or personality disorders, now suddenly see fit to turn around and make the bold claim that Women with Autism ‘mask’ their symptoms?

If these women were ‘masking’ their difficulties/symptoms so well, then how come they were misdiagnosed with any psychological conditions at all?

The only evidence of ‘masking’ to found within these revelations, comes not from the women, but from the psychologists who were unable to accurately diagnose them due to their own erroneous belief, that women could not experience Autism.

Which of course is how psychologists, via their own actions in refusing to view such women’s behaviors as evidence of Autism, turned the notion that women do not experience Autism, into a very neat and tidy self-validating and self-sustaining psychological fact in the first place.

Only of course, it wasn’t a fact at all. It was nothing more than one profession dictating and reinforcing the terms and conditions under which it would see fit to operate.

By so doing they also set out the definitions and the frames of reference upon which the foundations our understandings of Autism were formed.

Which means that for decades, thanks to psychology, women with Autism were often left out in the cold, alone and confused, and more often than not, grossly misdiagnosed and subjected to harmful treatments.

It’s an incredibly sad but true piece of history and I can well understand why those within the world of psychology would like to pretend it hadn’t happen.

But ignorance, whilst it may be bliss for some, can prove to be incredibly dangerous for others.

I for one, have absolutely no desire to ever see this kind of history repeating itself again.

And yet..

Once again, our understanding of the way in which Autism presents in women is now being crafted in much the same manner.

Psychologists are telling us that women ‘mask’ their Autistic symptoms, hence the majority of the population will believe that this is true.

Yet history has already shown us that this notion of women ‘masking symptoms’ is not a particularly true one.

If, (as has been the experience of many older Autistic women), there has been a propensity within the psychology profession toward misinterpreting and therefore misdiagnosing Autistic women’s symptoms, then they should already have in their grasp, the many well documented cases of older Autistic women who’ve been misdiagnosed with other mental health conditions in an attempt to explain their ‘different’ behaviors.

This in itself, should be enough to indicate that the notion of women ‘masking’ their symptoms may not be entirely true.

After all, one cannot be misdiagnosed with a mental health condition if one is not showing any indications or awareness of having behaviors that would mark one out as being ‘different’ or in need of a diagnosis.

So are we to believe that these older women were just a rare bunch who were exquisitely bad at ‘masking’ their symptoms, because let’s face it, if they were actually trying to hide their differences and their difficulties, yet still ended up being diagnosed with a mental health condition, they must have been exceptionally bad at?

Or are we to listen to their eyewitness accounts and give ourselves permission to explore these hidden implications?

I for one, am in favor of taking the time to listen to the real life experiences of our older Autistic women, the ones who are only just now, after years of struggling to find answers, being acknowledged and diagnosed with Autism.

If we do, we may just find ourselves questioning the validity of the idea that women with Autism have a history of ‘masking’ their symptoms.

 

Autism – Gender still matters.

Photography by Noell S Oszvald
Photography by Noell S Oszvald

While claims such as:

‘Women with Autism are harder to diagnose than men’

or

‘Women with Autism ‘Mask’ their symptoms and men do not’,

continue to exist, and as long as one gender continues to be diagnosed less than the other,
then, Yes, as far as I’m concerned, when it comes to Autism, gender still matters.

A person with Autism’s gender is still, quite clearly, being applied first and foremost, as the optimal qualifier for either validating or denying not only their Autism….

But also the ways in which they are expected to experience, display and define their Autism.

To me, as a woman, the use of gender as a qualifier for the existence of Autism, has made all of the difference.

So you’ll have to excuse me if I choose not to allow the inevitable, accompanying, gender specific notions of how, as a woman, I’m expected to define and experience my Autism, to over ride my own lived truths.

I will not bend myself in two, simply just to fit into some new, neatly categorized, version of what I should now be.

I am now, as I have always been, simply me.

A person.

Not a category.

Autism/Asperger’s Awareness in Women – A Teenagers Perspective – Written by Marnie

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“I wrote this for an all-girls group I am part of and thought that maybe I should share it and see what others have to say. Be nice ok. It took a lot for me to be able to talk about this.”

Autism and Asperger’s displays itself very differently in woman than it does in men.

Most Autistic traits in males are very obvious, they don’t hide them and it’s very clear.

With women, we actually subconsciously try to hide it, it’s in the female nature to fit in; you may find you mimic your female friends in different ways.

For example, you might copy certain phrases they use, figures of speech, accents, physical stances and behavioural habits.

I, for one, used to copy my friends self-harming and it wasn’t to get attention, it was because I assumed this was normal behaviour for other girls.

When I was in primary school I tried to fit in by soaking up every bit of knowledge about makeup and hair that I could because at the age of 7 years old I thought  this would stop girls from picking on me.

It didn’t work; it made them hate me because I knew more than they did.

Go figure.

I ended up hanging out with all the boys, playing rugby, play fighting and developing a very masculine attitude towards sports.

I LOVED running, I ADORED horse riding and even at a young age I felt that the ache that you get after a long trek on horseback, was the best thing in the world.

Even at the age of 11 I had this attitude, hell I even secretly loved the smell of sweat.

I also loved the smells at my friend’s farm because it smelt right.

I was still trying to fit in with the girls though, so I started wearing a bra to get noticed and saying that I had developed a crush on the boys, even though I hadn’t.

To me, boys were just there to be jumped on and knocked around and generally enjoy a good old rough n tumble with.

When my only female friend and best friend moved down to England I changed.

I wouldn’t speak to anyone because I felt as though someone had wrenched something out of my chest.

The girls who picked on me realized that I was extremely vulnerable so they took me under their wings and then threw me in the dirt for fun.

So I turned to books and the Harry Potter books saved my life.

I would sit and read ALL the time, hell I learned to walk while reading, write and kick a ball all at once.

I had a talent for reading and literature at school and was a total bookworm but I couldn’t do maths if my life depended on it. This made school very difficult for me.

In primary school I had a very nasty, abusive teacher and this together with the fact that I lost all my grandparents in the space of 5 months, meant that I fell behind in my school work.

I was moved to the Secondary School in the next village because of how horrendous the bullying of me had become.

The school there was filled with kids who were mostly brought up out in the middle of nowhere, on farms, so I got on amazingly with them!

Unfortunately at this point I had stopped horse riding due to my parents using it against me to get me to do simple things like cleaning.

I got bullied for a while during my first year there but I soon learned to stick up for myself, realizing the teachers here would actually do something (the head in primary school ‘solved’ bullying with a group hug and when physical contact scares the shit out of you anyway, it does not help) and the teachers didn’t look down at you.

In second year I had a fantastic English teacher who figured out I wouldn’t do homework but if she gave me clear instructions during class and made it interesting, I could get it done in 30 minutes flat.

She was, and still is, my favorite teacher. She was feared by most students but I adored her, she understood me.

I still struggled with maths and it caused me many issues.

I adored art, I wasn’t good at it but I loved it, especially my friends artwork because it was beautiful and I liked to just sit and look at the seniors artwork because it never failed to amuse me in one way or another.

I didn’t do well in P.E. because it meant someone was telling me how to do sport and that someone would be watching my every move, but I was exceedingly good at skiing, badminton and running.

If a teacher suddenly changed what we were going to be doing, it often ended in a full-scale meltdown because it made me uncomfortable.

By this time, my parents had noticed that I was becoming withdrawn, depressed and generally not my usual self.

So, I was being looked at for depression but I had too many happy moments to be ‘properly depressed’. Then I was being looked at for Bipolar disorder and this is when things got really interesting.

The woman seeing me about this was puzzled, I showed all the right symptoms but in her eyes something didn’t match, there was something missing.

Sure, I had insane mood swings but I also had social anxiety issues, if I got stressed I became physically ill (usually cystitis).

I was exceedingly intelligent but the knowledge was there in dribs and drabs, it never encompassed the whole of anything, rather it was filled by all of the  peculiar facts I clung to simply because I liked them.

I acted like a sponge for knowledge, though remembering that knowledge was a huge issue.

I showed signs of dyspraxia (Sp) and dyscalculia (sp) but not enough to make a definite diagnosis.

Then my little brother got diagnosed with Autism and they asked about me, mum said she had a light bulb moment and it all made sense.

Never getting over losing my one good friend, being easily distracted, not being able to handle large social groups, loud noises sending me into over drive and causing catastrophic melt downs, too much noise leaving me seemingly deaf, being scared of touch unless it’s invited by me, loving soft fluffy things, being overly sensitive to smells but not minding natural smells like body odour and farm smells, finding comfort in the company of animals more than people.

Well, the list goes on but it’s scarily hard to describe to a stranger what you are like when it takes 17 years before your problems are even noticed.

And Why?

Simple, males with autism have very prominent signs because the ‘hierarchy’ within men isn’t so severe.

Us women will do almost anything to fit in and to try to seem normal, so the girls with autism or Asperger’s strive to be like the others, to be ‘normal’, so it masks the majority of the signs.

They used to think Autism was less common in women but recently they’ve realized that the problem actually is that girls get misdiagnosed.

They get accused of being Bipolar/Manic Depressive or having attention deficit disorders or of just being plain weird.

You are NOT weird if you have an Autism Spectrum Disorder/Condition, you are different, you see the world differently and you have an AMAZING eye for truth.

You take things literally a lot, can’t tell the difference between sarcasm or being bullied at times, sure but you know what?

All you want is the truth; you strive for people to be honest, you NEED control, perfection and order or it stresses you out.

Nothing wrong with that.

It makes you YOU.

There are many other ‘disorders’ that pile on after you find out you have this, please don’t worry, its part and parcel of this amazing gift you have.

You may be ‘weird’ and you may feel like you don’t excel in the things you want to excel in but do you know why? It’s because people like us, have a tendency to be truly talented at something amazing.

You get autistic people who struggled with literature and creativity but are amazing at science, maths and things really involving raw intelligence.

Then there are autistic kids (like myself) that struggle with raw intelligence but adore literature, writing and using your creativity in art or music.

I still haven’t accepted myself for who I am because when I got diagnosed, I lost all of my friends.

I found out the hard way that they were judgmental and easily lead by a bully.

You may feel weird but I promise you, you are an amazing person.

You have such a unique way of seeing the world around you; you don’t need to fit in with that crowd of popular kids because they are false.

You like the truth, you need it.

I know this seems like a ramble but it’s how my mind works. Due to having Asperger’s I don’t really answer questions straight up, I ‘waffle on’, as one of my other English teachers was fond of saying to me.

But please, never be ashamed of having Asperger’s or Autism or of being on the spectrum at all.

If you have family members who are on the spectrum, please respect them; be honest with them because all they want is the truth.

Don’t make promises you can’t keep, if you break a promise to someone on the spectrum, it’s kind of like you broke the law.

Respect that we can be very edgy about our ‘personal bubbles’ at times while at others you might end up with us scrambling onto your lap for a cuddle simply because we are cold and you happen to be warm and squishy.

Respect that we don’t like loud noises, we can’t concentrate on more than one sound like most people can and it will confuse us.

Respect that we may have habits like, rocking, spinning, jumping, dancing, humming, snapping fingers and making silly noises.

We don’t mean to be annoying but when we get excited or depressed these things calm us down or express our need to show you we are excited.

Respect that if you have something colourful and pretty we might take it from you or stare at it because we have become entranced by its beauty.

Respect that if you take us outside where there are flowers we will insist on running through them, touching them and we will get upset if you take us away.

Respect that if you smell good we might sit and sniff your hair or we might stare at our food simply because it smells amazing.

Respect that we might not eat something because it looks ‘funny’ or its texture is ‘squelchy’ or just plain wrong.

Sure we can be as weird as all get out, but I can promise you this, we will have you in stitches laughing at our oddities and tendency to turn around and whisper rather loudly “look at that woman’s make up! She looks like a walking talking orange!” or “You smell funny” and then walk off like nothing happened.

Don’t be offended, we don’t mean to be nasty; we are just honest and a little strange.

I hope this adds a little insight.

I hope you all read this and find it helpful or that it at least puts a smile on your face.
Marnie”

“DISCLAIMER: This is written from my point of view as a girl with Asperger’s Syndrome If you are a teenage girl please DO NOT SELF DIAGNOSE all of a sudden based on this information, please. It’s the worst thing you can do; having issues doesn’t make you cool.”

You can view Marnie’s original post and more of her amazing writing at: http://vampirefreaks.com/journal_comment.php?entry=8355153&fb_source=message http://www.wattpad.com/28148017-autism-apergers-awareness-for-woman

 

Women and Autism – How one woman’s letter to a psychologist finally helped her receive an ASD diagnosis after years of personal invalidation.

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This amazing letter was written by a woman who suspected that she may be on the Autism Spectrum, prior to meeting her psychologist for the first time. Here’s what she had to say.

“Dear Dr L—

I hope in this letter I can give you a more thorough explanation of how I feel, the way these feelings affect me and why I think a diagnosis and continued support would be beneficial to me.

I have an over-active mind and experience high anxiety.

I constantly see things at multiple levels, including thinking processes and analyse my existence, the meaning of life, the meaning of everything continually.

Nothing is taken for granted, simplified, or easy.

Everything is complex.

Being serious and matter-of-fact has caused me many problems and I have been told on numerous occasions that I come across as rude and/or abrupt.

Every year my work progress development report says that I would benefit from some kind of people management course, which to date has never happened.

Making friends or developing relationships has always been and still is very difficult for me.

As a child, I was convinced that I was away the day everyone decided who they would be friends with.

This has always been an area that has caused me confusion.

I still have a constant feeling that I am misplaced, isolated, overwhelmed, and have been plopped down in the wrong universe.

If I had friends, my tendency was to blindly follow wherever they went and to escape my own identity by taking on theirs.

I dressed like them, spoke like and adapted myself to his/her likes and dislikes.

I have had a couple of “friends” in my life for a very long time but I mostly talk to them online as I do not like leaving the comfort of my safe environment.

Even with people I know well I do not like being in their houses as my anxiety levels hit the roof.

I get agitated and uncomfortable not knowing what to say, what to do, if I’ve over stayed my welcome or would it be rude if I left now, have I stayed long enough.

This leads to seriously high stress levels, nasty thoughts in my head, sweating, increased heart rate and a sudden urgency to flee.

When I know I don’t have to be anywhere, talk to anyone, answer any calls, or leave the house, I can take a deep breath and relax.

Even something as simple as a self-imposed obligation, such as leaving the house to walk the dog can cause extreme anxiety.

It’s more than just going out into society; it’s all the steps that are involved in leaving–all the rules, routines, and norms.

Choices can be overwhelming: what to wear, to shower or not, what to eat, what time to be back, how to organize time, how to act outside the house….all these thoughts can pop up.

I struggle when I’m out with sounds, textures, smells and tastes, which in turn creates a sense of generalized anxiety and/or the sense that I am always unsafe or in pending danger, particularly in crowded public places.

There have been times in crowded places like shops where the confusion and anxiety has gotten so high that I have had to just say “I need to go” and have walked out and straight to the car to gather my thoughts and calm down.

Counting, categorizing, organizing, rearranging, numbers brings me some ease and has been with me ever since I can remember.

Over the years I have sought out answers as to why I seemed to see the world differently than others, only to be told I’m an attention seeker, paranoid, hypochondriac, or too focused on diagnoses and labels.

My personhood was challenged on the sole basis that I “knew” I was different but couldn’t prove it to the world.

My personhood was further oppressed as I attempted to be and act like someone I’m not.

I have children diagnosed with ASD and am concerned that I am not doing the best for them due to my own inhibitions.

Still I question my place in the world, even more so now that my son has a diagnosis of ASD and I see so many similarities between what he’s going through and my own personal experiences.

How can I help them to adapt and learn when I don’t know myself how to deal with the situations that are causing them the most problems?

I would really benefit from help in learning to deal with my issues.

Now that I understand the Autism Spectrum and am convinced I am well within the spectrum, the hope is that I will get support and advice can benefit me and allow me to help my children.

My hope is that through diagnosis and the support that should follow; I will be able to work on the areas that I lack the necessary skills for dealing with society, in.

If I can get help for myself it will put me in a better position to guide and help my children.

Apologies for the lengthy explanation, I hope I have given you the information you were seeking. If not please don’t hesitate to contact me.

Yours sincerely

Amanda”

 

Amanda is sharing this letter in the hope that it may help other woman avoid some of the pain and confusion she’s experienced in her own life. Thank you so much for your willingness to help others Amanda ❤

 

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.

Women and Girls on the Autism Spectrum

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“In recent years, questions have been raised about the ratio of males to females diagnosed as having an autism spectrum disorder (ASD). Overall the most recent studies suggest that the prevalence of autism spectrum disorder is about one in 100, but what of the male/female ratio?

There is no hard evidence of numbers. Various studies, together with anecdotal evidence, have come up with male/female ratios ranging from 2:1 to 16:1.

Whatever the true ratio, clinical referrals to a specialist diagnostic centre such as The National Autistic Society’s Lorna Wing Centre have seen a steady increase in the number of girls and women referred.

Because of the male gender bias, girls are less likely to be identified with ASD, even when their symptoms are equally severe.

Many girls are never referred for diagnosis and are missed from the statistics. At The Lorna Wing Centre, emphasis is placed on the different manifestations of behaviour in autism spectrum conditions as seen in girls and women compared with boys and men.

In our paper (2011) we have identified the different way in which girls and women present under the following headings; social understanding, social communication, social imagination which is highly associated with routines, rituals and special interests. Some examples cited in the paper are:

• Girls are more able to follow social actions by delayed imitation because they observe other children and copy them, perhaps masking the symptoms of Asperger syndrome (Attwood, 2007).

• Girls are often more aware of and feel a need to interact socially. They are involved in social play, but are often led by their peers rather than initiating social contact. Girls are more socially inclined and many have one special friend.

• In our society, girls are expected to be social in their communication. Girls on the spectrum do not ‘do social chit chat’ or make ‘meaningless’ comments in order to facilitate social communication. The idea of a social hierarchy and how one communicates with people of different status can be problematic and get girls into trouble with teachers.

• Evidence suggests that girls have better imagination and more pretend play (Knickmeyer et al, 2008). Many have a very rich and elaborate fantasy world with imaginary friends. Girls escape into fiction, and some live in another world with, for example, fairies and witches.

• The interests of girls in the spectrum are very often similar to those of other girls – animals, horses, classical literature – and therefore are not seen as unusual. It is not the special interests that differentiate them from their peers but it is the quality and intensity of these interests. Many obsessively watch soap operas and have an intense interest in celebrities.

The presence of repetitive behaviour and special interests is part of the diagnostic criteria for an autism spectrum disorder. This is a crucial area in which the male stereotype of autism has clouded the issue in diagnosing girls and women.

As highlighted above, the current international diagnostic criteria do not give examples of the types of difficulties experienced by girls and women. In order to recognise the different behavioural manifestations, it is important to take a much wider perspective regarding the social, communication and imagination dimensions in addition to the special interests and rigidity of behaviour.

The girls and women learn to act in social settings. Unenlightened diagnosticians perceive someone who appears able and who has reciprocal conversation and who uses appropriate affect and gestures as not fulfilling the criteria set out in the international classification systems.

Therefore a diagnosis is missed.

It is only by asking the right questions, taking a developmental history, and observing the person in different settings, that it becomes clear that the individual has adopted a social role which is based on intellect rather than social intuition. To quote:

“The fact that girls with undiagnosed autism are painstakingly copying some behaviour is not picked up and therefore any social and communication problems they may be having are also overlooked. This sort of mimicking and repressing their autistic behaviour is exhausting, perhaps resulting in the high statistics of women with mental health problems.” (Dale Yaull-Smith, 2008).

It is important to prepare girls for a life of quality as adult women.

Schools need better trained staff to recognise and address the needs of students on the autism spectrum and especially the more ‘subtle’ presentation in girls.

Schools need to be more ‘girl-friendly’ with girl orientated personal, social skills classes.

There needs to be a focus on the ‘hidden curriculum’ which directly teaches the skills that typically-developing girls learn indirectly and intuitively, such as the unwritten rules of girls’ social interactions. Girl orientated personal, social and health education should be part of the curriculum.

Schools educating girls on the autism spectrum should focus on teaching independence and strategies to reduce vulnerability.

They also need to address self-image, self-esteem and confidence building. Gender identity is a big issue for girls, as is emotional wellbeing and fostering mental health. Society has expectations of both men and women, but many women on the autism spectrum believe that these expectations are greater for women.

In the book ‘Asperger’s Syndrome for Dummies’ (Gomez de la Cuesta & Mason 2010), the authors touch on this issue and describe different ‘types’ of women on the autism spectrum. At work, women experience ‘a glass ceiling that is double glazed’ according to the authors. Women experience the same difficulties as other women, plus the difficulties experienced by women on the autism spectrum. These women often go into professions that are traditionally male-orientated. Harder (2010) has produced a booklet called ‘Illustrated glimpses of Aspergers for Friends and Colleagues’. This gives a valuable insight into the difficulties women on the autism spectrum experience at work and provides explanations to colleagues of the different ways in which such women perceive the world.

The difficulties in the diagnosis of girls and women arise if clinicians continue to use the narrow definitions set out in the International Classification Systems.

It cannot be stressed enough that diagnosis and full assessment of needs cannot be carried out by following a checklist. Proper assessment takes time and detailed evaluation is necessary to enable a clinician to systematically collect information which not only provides a diagnostic label, but more importantly, a detailed profile of the person.

We wish to draw attention to the fact that many women with an autism spectrum condition are not being diagnosed and are therefore not receiving the help and support needed throughout their lives. Having a diagnosis is the starting point in providing appropriate support for girls and women in the spectrum. A timely diagnosis can avoid many of the difficulties women and girls with an autism spectrum disorder experience throughout their lives.”

Dr Judith Gould and Dr Jacqui Ashton Smith
Good Autism Practice, May 2011
This post originated from http://www.autism.org.uk/about-autism/autism-and-asperger-syndrome-an-introduction/gender-and-autism/women-and-girls-on-the-autism-spectrum.aspx