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.

Asperger’s Syndrome in Females – A biased perception.

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Tony Attwood (2006) observed that parents and teachers often send boys for evaluation at the point when their aggressive behaviour becomes a significant problem at home or school. The practice of making referrals based on acting out behaviour, means that overall, more boys will be evaluated, and the perception that aggressive behaviour is significant in AS may mean that parents and teachers overlook children who do not display disruptive behaviour (Attwood, 2006; Wagner, 2006). Girls, for example, may not have tantrums or meltdowns at school, but may instead, refuse to respond to requests or participate in activities (Wilkinson, 2008).

An often present feature in Asperger syndrome is an intense interest in one or more areas (Beteta, 2009), and long, encyclopaedic monologues, often on obscure subjects, are usually recognized as indicating a possible AS diagnosis in boys (Attwood, 2006). Findings suggest, though, that girls tend to have more age-appropriate interests, that generally reflect those of their peers, e.g., horses, or creative pursuits (Attwood, 2006; Beteta, 2009).

Attwood (2006) emphasizes, however, that the dominant role these interests play in the life of a girl with AS is qualitatively different from the role that the same interests play in the lives of her female peers. Attwood (2006) stresses further that a girl’s intense interests can extend well beyond an appropriate age,  and that this can help to determine abnormal intensity and focus.

Overall, these observations suggest that increased insight into how these interests function differently for girls with AS, may help to clarify diagnosis.

The use of social echolalia, i.e., mimicking others through imitation and modelling, exists almost exclusively in girls with Asperger syndrome  (Beteta, 2009; Wilkinson, 2008). In an effort to reduce their social and communication impairments, girls may copy the mannerisms, voice, persona, and behaviour of others, often quite successfully (Attwood, 2006).

However, Beteta (2009) points out that although girls may seem to benefit from the use of social echolalia, often they do not truly understand the contextual meanings of what they are mimicking.

Ryden and Bejolet (2008) found that adult females also seemed more successful at mimicking social behaviour than adult males, and for this reason, they rarely fit the original description of Asperger syndrome.

This suggests that the use of social echolalia may hinder the recognition and diagnosis of AS, and consequently, access to relevant support (Attwood, 2006), and that girls and women may experience increased stress in dealing with the consequences of mimicking behaviours that they may not quite understand.

Overall, a greater awareness of gender differences in phenotypic expression is vital so that girls will receive an accurate diagnosis, and access to services that could lessen the impact of AS, particularly beyond childhood.

Furthermore, as researchers discover the extent to which statistical gender differences translate into clinical significance, it is likely that support services will need modification to accommodate this new knowledge (Giarelli et al., 2010).

Differences in attitudes and behaviour towards females with Asperger Syndrome may also contribute to a delayed or missed diagnosis (Giarelli et al., 2010; Hartley & Sikora, 2009).

Attwood (2006) noticed that parents were more hesitant to seek a formal diagnosis if their daughters appeared to be functioning adequately, and that clinicians tended to hesitate in making a diagnosis unless the signs were quite conspicuous. This reinforces the observation made by Hully and Lamar (2006) that AS traits need to be exaggerated in females for a formal diagnosis.

In contrast to boys with AS, who are more often teased, ignored, or bullied by their male peers, girls more often experience support and even protection from some of their female peers, which could result in failure to recognize significant social impairments (Attwood, 2006). Beteta (2009) stresses that these friendships rely on the willingness of a girl’s peers, and accordingly, Rastam (2008) found that many girls with AS tended to have only one friendship that was usually tenuous in nature, and few peer relations overall.

In addition, the perception that many girls with Asperger syndrome seem to manage in social situations, can cause others to question the accuracy of diagnosis.

One result may be that when a girl exhibits behaviour common to AS, it is misunderstood as deliberate or wilful (Beteta, 2009), and she may not receive the necessary supports. Cooper and Hanstock (2009) found, for instance, that school staff continued to feel that Jane’s behaviour was “put on”, even after she received a diagnosis of Asperger syndrome.

Moreover, parents and teachers often connect social and functioning difficulties with intrinsic personality traits rather than to a developmental disorder like AS (Cooper & Hanstock, 2009). Specifically, they may misinterpret deficits in social skills, such as poor eye contact, as signs of shyness, embarrassment, or naivety (Wagner, 2006).

Girl’s social impairments, for example, are often misconstrued as stemming from their reserved natures, hence girls initially received an incorrect diagnosis of early onset anxiety disorder (Wilkinson, 2008).

In conclusion, there are a number of possible explanations for the 10:1 gender ratio in Asperger syndrome. Some think that the large number of diagnosed males accurately reflects natural sex differences in brain specialization, or points to sex-specific genetic susceptibility to AS (e.g., Baron-Cohen &Wheelwright, 2004; Jones et al., 2008).

Others believe that the current gender ratio misrepresents the incidence of AS in females (Thompson et al., 2003).

A biased perception of how AS presents may contribute to underdiagnosis (Attwood, 2006; Beteta, 2009), as many emphasize the overuse of a male prototype (e.g., Hully & Lamar, 2006; Thompson et al., 2003). Clinicians may attribute symptoms to psychiatric disorders more commonly seen in the general female population (Cooper & Hanstock, 2009; Rastam, 2008; Ryden & Bejolet, 2008), gender differences in phenotypic expression could mean that core impairments go unnoticed or are misinterpreted (Attwood, 2006; Beteta, 2009; Wilkinson, 2008), and the attitudes and behaviour of others towards females with AS may also contribute to underdiagnosis (Cooper & Hanstock, 2009; Wagner, 2006).

It is clear that one explanation for the uneven gender ratio is not sufficient on its own. The reasons are multifaceted and complex, and it is likely that other possibilities will emerge with additional research.

However, a greater understanding of gender differences in Asperger syndrome will likely play a large role in balancing the 10:1 ratio, as more females will receive an accurate diagnosis.

Written by A. MacMillan

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 formally 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.