We’re Women with Autism – Not Mystical Imps, Sprites or Fairies….. Get it right.

Artwork by Devushka
Artwork by Devushka
Sorry to disappoint all of those who wish to believe that Women with Autism are made out of some kind of unique fairy dust that endows all of us with “special talents” or “super powers”, because we are not magical beings.

We are Women Wired Differently…. not Women Wired Magically.

Please stop confusing our different skill sets, ie, our tendency to focus on the finer details of life that often make us more likely to pick up on the inconsistencies that are usually hidden within the bigger picture that people present to us, with being the equivalent of having a “super power”, “gift”, “unearned talent” or whatever else some would like to call it.

The truth is, that for us, our intense focus on fine details, whilst it may have started out as a fascination, has also become a survival mechanism.

Our intense focus is not magical. It’s practical. It’s what we do when we can’t “read” a person’s level of sincerity simply by looking into their eyes, listening for and recognizing the tonality in their voice or knowing automatically whether or not a smile is authentic at a glance.

Yes we may see the world in ways that others do not, but it’s still the same world and we’re still viewing it with eyes that are made up of all of the same biological matter as everyone else’s eyes are.

Yes at times it may seem as if we see more, but that’s not because we’re psychic beings floating about in fairy dust, it’s simply because we look harder and longer at the simplest of gestures, in order to decipher and makes sense of them for ourselves.

When we feel an emotion, we often feel it deeply but that’s not because we’re “super empaths” or somehow magically connected to the pain of another, it’s because we feel in fine detail too.

Yes we have a degree of empathy for others that may run deeper than most, but that’s not because we’re psychic, it’s because we’re focused.

Just as we focus visually and intellectually on the finer points that others may have missed, we can also focus our feelings on the finer points of emotions that others may have by passed.

We feel all of our emotions often simultaneously specifically because we live our lives without the benefit of having the filters that other people apply to their thoughts, their feelings, even their ways of seeing.

Which is why we can become so overwhelmed by our emotions that it makes it difficult for us to talk about or even explain them.

The depth of our feelings does not make us magical beings simply because we can feel that which we cannot explain.

It in no way means that we are magical beings. It simply means that we are unfiltered beings.

We’re not made up of different stuff or fairy dust at all. We just don’t have a way of filtering out the world around us the way that other people do.

I know that some would like to believe that this state of affairs somehow also makes us “purer beings”…. but does it?

Does it really?

And isn’t the idea of “purity” also linked to “innocence”, which is also linked to “children”…. as in the “innocence of a child”…….

Just think about it. We’re not magical, we’re not pure and we’re not children. We’re Women who take in and understand the world differently simply because we see it differently.

Do we really want the realities of our lives as Autistic Women being overlooked and marginalized simply because we’re being linked to the infantile ideals and imagery that being viewed as either ‘supernatural’ or ‘overtly innocent beings’, brings along with it?

 

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Autism Is Not Gender Specific – Our Society Is….

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The labeling of  Women who do not fit neatly within the confines of society, as being ‘nutty’, ‘weird’, ‘batty’, ‘anti-social’, ‘loners’, ‘reclusive introverts’ or ‘eccentric’, when they may indeed be experiencing undiagnosed Female Autism, creates the kind of life long harm that ensnares Undiagnosed Autistic Women forever, within the confines of an artificially imposed, yet personally experienced prison, of societies making.

It’s high time that  the name calling, isolation and double standards that lead to the abandonment and  misdiagnosis of Women with undiagnosed Autism stopped.

It should no longer be considered acceptable for our society to be encouraged to acknowledge only those presentations of  Autism that fit within the confines of Male Autism.

Autism is not a Male only condition.

Yet still today, if a male exhibits peculiar behaviors, or behaviors that are viewed as being out of the norm for males, they are automatically considered for an assessment of Autism. 

Their behaviors are both attributed too, and understood as being part and parcel of  the presentation of Male Autism, even before that assessment takes place.

As such, Autistic behaviors in males are considered excusable, simply because it’s perceived that they may be on the Autism spectrum.

Yet, when a Female exhibits similar sets of peculiar behaviors, or behaviors that are viewed as being out of the norm for females,  she’s considered by others to be ‘weird’,’ unruly’, ‘unfeminine’,”highly strung’,’ intentionally disruptive’, ‘rude’, ‘bossy’ or ‘deliberately seeking attention’.

The one thing  Women’s behaviors  never seem to be automatically considered for, is an Assessment for Autism.

As a result, most Females on the Spectrum (either diagnosed or undiagnosed)  are often punished socially, emotionally, economically and psychologically,  for behaviors that they themselves may have no idea are unwelcome or are breaching social expectations.

Many girls and women are not even aware that they are on the Autism Spectrum until much later in life.

Nor unfortunately, are the people who often surround them in their daily lives.

Even their families, friends and peers often fall into the trap of  re-attributing or reconstructing,  the traits of Autism in  Women, as personal behaviors that arise due to a perceived lack of self-discipline, ambition, sociability, maturity and in many cases, even sanity.

In short, when it comes to Women and Autism, it still seems that the overwhelming propensity amongst many in society is to perceive Female Autistic traits as evidence, not of Autism as they do in Males, but as evidence of some kind of personal female weakness, fault or issue.

This results in the re-labeling of Female Autistic behavior as being anything but…Autistic.

It seems that it is still far easier for those within our society to re-label Autistic Women with any number of demeaning personal faults, than it is to open their eyes to the possibility that the rates of Autism amongst Women, particularly older women, are much higher than anyone dared previously imagine.

Autism is not Gender Specific and therefore, nor should our understandings of it be.

The Gas-lighting of Women and Girls on the Autism Spectrum

Artwork by Mirella Santana

Of all the traits attributed to Women on the Autism Spectrum, there remains one that not only continues to go unrecognized as a valid trait but has also suffered the fate of being reconstructed by professionals as a rationale for denying Women a diagnosis.

The trait I’m referring to is that of developing a strong sense of self-awareness.

In almost every description pertaining to the experiences of Women with Asperger’s Syndrome there is evidence of the development of an early, inexplicable sense of ‘otherness,’ to be found.

This sense of ‘otherness’ expands exponentially as girls grow older and develops into a keen sense of self-awareness.

Their strong sense of self-awareness in turn, increases their sensitivity toward any and all experiences that suggest or confirm their perceptions of themselves as different.

Undoubtedly, whilst at school, undiagnosed spectrum girls will find themselves showered, almost daily, with an endless array of situations that expose their responses and reactions as differing from those around them.

As a result, many spectrum girls may find it difficult to relate to their peers and feel that they have very little, if anything at all, in common with them.

Given that young girls are not yet bound by the pressure to conform, many will quiet happily choose to pursue their own interests instead of seeking to feign an interest in the activities of their peers.

Early schoolyard experiences can therefore be seen to reinforce and exacerbate the already strong sense of ‘otherness’ that many young girls on the spectrum feel yet do not necessarily view as being an issue for them.

It is not until the teenage years arrive that ‘feeling different’ truly becomes an issue.

During this time, the combined weight of parental, peer and societal pressures to conform begins to bear down on them.

Suddenly they find that any and all previous levels of tolerance and acceptance towards their uniqueness of being, are replaced with the message that their right to happily pursue their own interests, has been irrevocably and irrationally rescinded without their consent.

Now they are expected to act like everyone else and enjoy participating in only those activities that are deemed appropriate for teenage girls to engage in.

These radical and unexpected changes usher in a period of overwhelming personal confusion and sensory overload as the ability to escape into their own comfortable zones of ‘personal interest’ are stripped unceremoniously away from them.

During this time, some Spectrum girls will begin to experience melt downs due to not being able to escape either the sensory or the emotional pressures that surround them.

Often these meltdowns will mistakenly be viewed as deliberate acts of rebellion and punished accordingly.

Some spectrum girls, on the other hand, will set their minds to the task of trying to figure out exactly what the new rules of engagement are in order to seek out any loopholes that may still allow them to continue to pursue their own interests without falling foul of their peers.

This is often a process of trial and error which still has the potential to attract punishment for any and all inadvertent social infractions.

Yet no matter which option an undiagnosed teenage girl chooses the consequence all tend to lead to the same experience of psychological harm.

Psychological harms experienced include:

An extreme sense of personal disorientation

Confusion over what has taken place.

Erosion of their formerly strong sense of self.

Self-doubt.

The onset of the belief that being different is equivalent to being wrong.

Creation of the belief that no one will ever like them for whom and how they truly are.

Acceptance of the idea that they cannot be themselves and still be liked.

The combination of all of these psychological harms explains the overwhelming sense of social confusion, lack of self-esteem, lack of confidence and the propensity for self-doubt that many (both diagnosed and undiagnosed) adult Autistic women report experiencing.

It is worth noting that all of the negative messages that undiagnosed Autistic girls/women experience whilst growing up, produce the same responses that one would expect to find in an individual who has been the victim of prolonged emotional and psychological manipulation or abuse.

Another term that has more recently been applied to describe the way in which this form of emotional and psychological manipulation can be subtly delivered is Gas-lighting.

Gas-lighting is renowned for creating a sense of personal disorientation and self-doubt in those to whom it is applied.

Yet sadly, the process of gas-lighting for undiagnosed teenage girls does not end upon their reaching adulthood.

For many women who recognize themselves within the folds of female Autism later in life, the process of seeking understanding and validation in the form of a diagnosis from a professional, often leads to yet another round of gas-lighting.

If a woman expresses the capacity to recognize and understand that she may be Autistic, she’s then told by professionals, that she’s too self-aware to be on the Autism Spectrum and is summarily dismissed.

If a woman expresses feeling that she may have been let down by others or betrayed by a society that only values certain ways of being, she is told by professionals, that she has a persecution complex and is summarily dismissed.

If a woman expresses the capacity to feel love, empathy or even hints at the potential for having a sense of humor, she’s told by professionals, that she can’t be on the Autism Spectrum as Autistic people (according to some) lack the ability to feel any of these things.

If a woman’s married, in a relationship or has children, she’s told by professionals, that she can’t be on the Autism Spectrum as she obviously has both the capacity to maintain a relationship and care for others. Autistic women (supposedly) cannot do this.

If a woman is single, reclusive and/or unemployed, she’s told by professionals, that she’s suffering from depression and that all of her other issues will go away once she begins medication and starts getting out more.

And worst of all, if a woman is educated, articulate and well-informed about Female Autism and why she feels she belongs within it, she’s often told by professionals that she’s making things up about herself in order to gain attention and is instead diagnosed as having either a Personality Disorder or Bi-Polar Disorder.

The tendency of those within the psychological profession to constantly deny the validity of an Autistic woman’s understandings of herself by instead reinterpreting and reinventing her words as evidence that she is too self-aware to be on the Autism spectrum, is in itself, the ultimate form of Gas lighting.

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?

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.

The problem with the Mask Analogy for Women with Autism

Digital art by Rik Oostenbroek

A mask is a false external covering.

It can be worn to conceal a person’s true identity for better or for worse.

The idea that Women with High Functioning Autism are not being adequately diagnosed, simply because they wear masks, also carries within it the ideation that all women with Autism intentionally try to conceal their true selves in order to ‘pass as normal’.

This in turn implies that all women with Autism willingly engage in the act of perpetrating some form of female deception which, in turn, somehow creates the inability of professionals to recognize them for who they are.

The idea that women are fiendish creatures, capable of deceiving men, is not a new one.

In fact, that particular idea is as old as humanity and has been used successfully over the course of history to deny women the same basic human rights and considerations as men.

Which is why I’m not convinced that the increasingly accepted notion that women with Autism are being misdiagnosed because they “mask” their symptoms, is an entirely valid or correct one.

So let’s look at this concept of ‘masking’ a little more closely.

Women with Autism will often express the feeling that they’ve ‘never fit in’ with those around them and that they’ve always, including childhood, felt somehow ‘different’ to others.

As far as I can see, such expressions are not consistent with the idea of ‘masking one’s true self’ from others.

If anything, most women diagnosed later in life often express a sense of both exasperation and sadness over the fact that no one close to them either noticed or addressed their difficulties as a child.

So what are we to make of these facts?

Are we to say that the inability of those around them to acknowledge their differences and their needs, as children (girls), somehow created in them a desire to ‘pretend’ or ‘mask’ who they were?

To me such rhetorical connections make no sense at all, as it would be more accurate to say that women with Autism experienced having their needs ignored as children, rather than saying that they ‘masked’ their needs under such circumstances.

Whilst, it may be fair to say that as we grow older we learn how to try to ‘fit in’ better, I don’t think it is equally fair to say that we learn how to ‘mask’ ourselves better.

We don’t ‘mask’ ourselves but we do try our best to ‘fit in’.

As far as I know, the desire to ‘fit in,’ to not stand out and therefore become the object of ridicule, is a trait that is common to all humanity and not just those of us who are female and have Autism.

And this is the problem with the mask analogy.

Everyone tries to ‘fit in’.

Not everyone, however, practices deceit in order to do so.

We women with Autism are a profoundly honest lot.

Our honesty, along with our lack of awareness of social cues, forms one of our key features.

We are so honest with other people that our honesty often see’s us labelled as ‘blunt’ or ‘rude’.

Given these facts, perhaps someone can tell me just how it is, that we ‘mask’ our true selves again?

Oh yes, that’s right, we ‘pretend’ to be ‘normal’.

Well obviously we’re not doing a very good job of it, are we, if we’re constantly being accused of being too ‘blunt’ or ‘rude’.

We also apparently make ‘easy targets’ of ourselves because in reality, we are more often than not, the people who are lied too and taken advantage of  by others.

Given all of this, one could ask; just whose perception of ‘normal’ are we applying here and whose definition of ‘pretending’ or ‘masking’ are we using?

A mask is usually used to denote a form of visual perception, a false front, a concealment.

So are we being accused of ‘masking’ our true selves simply because we look so normal?

If that’s the case, may I just point out one simple fact, of course we are going to look like human beings because we are human beings.

Women with Autism are not some kind of exotic sub-species, (demarcated by purple spots or pink hair), any more than men with Autism are.

We can’t change who we are and in all honesty, most of us don’t try to ‘mask’ who we are either.

What we do is try to ‘fit in’ so that we can avoid being ‘easy targets’ for disreputable people to hit.

And what makes us easy targets?

Our trust, our propensity for taking people at face value and our inability to discern when someone is deceiving or lying to us.

Clearly the only things we need to get better at ‘masking’  are our vulnerabilities. Oh but wait, isn’t that exactly the very thing we’re already meant to be so blindingly good at?

‘Masking’ our true selves so well that we confuse professionals?

Think about it.

Is the mask analogy, truly one that  fits, women with Autism?