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

Asperger’s Syndrome in Women – Different not less

Art by Igor Mudrov

Art by Igor Mudrov

I have noticed that whenever women with Asperger’s Syndrome try to speak up and share the fact that they often experience greater levels of discrimination,

medically, in terms of receiving an accurate diagnosis at an early age and socially, in terms of having their diagnosis recognized and understood by others,

they are also often accused of suggesting that men with Asperger’s Syndrome must therefore, somehow,  have an easier life.

This is simply not the case and it irks me so that women with AS,

who seek simply to share their truths,

are so consistently having the validity of the expression of their own personal experiences

twisted and therefore,

disregarded in such a way.

Women with Asperger’s Syndrome  – Different not Less.

 

As I see it – Society treats males with Aspergers Syndrome differently to females with Aspergers Syndrome

Art work by Elena Vizeskya

Art work by Elena Vizeskya

I know there are many male Aspies who feel that there are no differences between their experiences of Asperger’s Syndrome and women’s experiences of Asperger’s Syndrome.

On one level I understand this realm of thought because essentially, if you’re only talking about the way in which we experience being socially overwhelmed, yet at the same time feel socially isolated, or being constantly misunderstood, or socially awkward and confused, then, yes these feelings/experiences are the same.

However, where they differ, is the way in which these experiences are being both understood and accommodated for by others and the consequences of that.

In simple terms, women can never truly know what it feel like to experience all of the social expectations that being a male of the species involves just as males can never truly know what it feels like to experience all of the social expectations that being a female involves.

In most areas of life this male/female binary differentiation is understood, accepted and endlessly theorized over as to how it came about.

Yet somehow, when it comes to the experience of living a life with Asperger’s Syndrome within a society in which it is already well recognised that this gender division impacts on such things as financial outcomes, employment opportunities, and still in many areas of the world, civil rights, let alone personal subjective experiences, some still seem to insist that women with Asperger’s Syndrome must experience their Asperger’s Syndrome in the same ways that males do.

From my experience this is simply not true.

My brother, for example, has always been excused from attending family occasions, a friend’s party or any form of public gathering, without a word of criticism.

More often than not, other family members can be heard willingly offering up excuses for him. ‘Oh you know Al, that’s just the way he is. He’s never liked being around crowds (including being in a room with more than 4 family members at one time).

Yet, if I feel that I do not wish to or am unable to attend a family occasion, a friend’s party or any other form of public gathering to which I’ve been invited, I am bombarded by words of criticism.

‘Oh, she’s snubbing us’. ‘How rude of her not to bother to attend.’ ‘I suppose she thinks she’s too good to bother with us,’ or the good old ‘She’s always so disorganized’.

In this instance, both my brother and I may have the same reasons for not wanting to attend whatever it is we’ve been invited too, i.e., there will be too many people, too much noise or we’re feeling too personally overwhelmed to deal with a group of people we don’t know, or we’re afraid of being socially awkward – again, of we’re simply already worn out from having had to deal with other social occasions.

Yet despite the fact that we may choose not to attend these social gatherings for the same reasons, the judgements and criticisms of others towards us as individuals can be and are very different.

My brother doesn’t have to put up with being treated as if he has done something terribly wrong or highly offensive by others if h chooses not participate because of his Asperger’s.

Whereas I, on the other hand, due to my Asperger’s, am continuously being placed in a position in which my integrity as person and my loyalties as both a family member and a friend are constantly being questioned.

I believe that the only explanation for the disparity between the ways in which it’s seen as acceptable for my brother to avoid social gatherings, whilst I experience being berated for the same behavioral need to avoid social gatherings, is gender.

He’s a guy, therefore its okay for him to not always want to be social.

I am a gal, I’m supposed to live for social occasions, to enjoy them, to want nothing more than to celebrate a reason to get all glammed up and engage in chit-chat.

Wrong.

I don’t enjoy social occasions, I don’t want to have to get glammed up just to stand around and have to try too hard to make small talk with people I may or may not know.

I am as socially awkward as my brother,( who incidentally is also never expected to get whatever the male version of ‘glammed up’ is), yet these facts are constantly being ignored and I think they’re being ignored simply because I’m a woman with Asperger’s Syndrome and apparently women with AS are supposed to be able to cope.

We’re supposed to be able to successfully mimic the social niceties of others so well that we can “pass ourselves off as being normal”.

And more than that, we’re also supposed to want to “pass as normal”.

It’s what we live for.

It’s what we take pride in.

Apparently there is no greater compliment for a woman with Asperger’s Syndrome than – “oh, I never would have thought there was anything ‘wrong/different’ about you. You don’t look/act like some with Asperger’s Syndrome.”

Wrong.

When it comes to Asperger’s Syndrome and gender, let me tell you that I hold as little interest in having to play the social game of ‘passing as normal’, as my brother has.

The key difference between us on this score is that only one of us is being accepted for the social differences/difficulties that our Asperger’s causes us, and it’s not me.

If you feel that you can offer up an explanation for this binary phenomenon between acceptance of the AS experience in a male, yet not in a female in the same family, other than gender of course, then I’d love to hear it.

Asperger Syndrome and the need for Social Justice – Could Autism be benefiting our society?

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A feature of Asperger’s syndrome that can be advantageous to society is a concern with social justice and discrimination against minority groups.

This can sometimes be strikingly developed in Asperger’s cases, often because of their characteristic impatience with conventional hypocrisy and publicly accepted double standards (not to mention the fact that they sometimes feel the victims of discrimination themselves).

Modern societies have canonized such concerns in law and public attitudes, and a number of famous campaigners for equal rights and social justice have been posthumously proposed as Asperger’s cases.

Autistics tend to be loners, who are poor at participating in group activities of the kind that exploit social justice and anti-discrimination sentiment for self-serving political and social advantage.

Modern authorities on autism have described autistics as “truth-tellers” and, thanks to their bottom-up, devil-in-the-detail style of cognition, are often the first to see that the emperor has no clothes or that the great idol has feet of clay.

Furthermore, they are also likely to be the ones to blurt out the truth, and draw attention to the inconvenient fact, irrespective of what others may think.

I do believe that autistic antagonism to lies and deception of all kinds is not only the most redeeming feature of the so-called disorder, but one which autism shares increasingly with modern societies—and very much to their benefit.” Original Article by Christopher Badcock http://www.psychologytoday.com/blog/the-imprinted-brain/201006/the-big-plus-the-outsider-society-truth-challenges-lies

I have often wondered whether or not the world would be a much better, fairer place, if it were being run by people who felt a burning need for social justice… aka…Aspies.

The above abstract is from a much larger article by Christopher Badcock which makes some strikingly good points regarding the ways in which the strengths of those with Asperger’s could be put to good use within our societies.

So what do you think?

Have your say on whether or not you think the world be a better, fairer place if it were being run by Aspies in the comment section below.

Asperger Syndrome – Grappling and Grasping

Artwork by Linzi Lynn

Something I’ve often noticed about the way Asperger’s Syndrome impacts on my life is the disparity that it creates between my inability to speak or talk smoothly and freely to people in real life, compared with my ability to express myself clearly in writing.

Believe it or not I regularly forget the words I want to use when I’m talking to people face to face.

They simply seem to just escape me.

Like birds that have flown their coop and no amount of trying can retrieve them.

In moments like these I find myself gasping for breath and completely lost, as my inner panic at not being able to find the right words, envelopes me.

More often than not I end up stuttering or just stopping, awkwardly, half way through a sentence.

Trapped in a suspended silence, gazing solemnly at the floor, while my mind continues grasping for that which can no longer be found.

I’m sure at such times I must come across as being an absolutely dim-witted ‘weirdo’.

I guess this is also the reason why most people are surprised to discover that I have two degree’s.

I bet they wonder exactly which cereal box I found my degree’s in.

It’s also why my family insist that I “could be doing so much more with my life….if only I wanted to”.

Hmmm…. Yes…. Right…. Because of course I want to be completely tongue-tied and empty-headed whenever I’m speaking to another person.

I can never seem to make my family understand that I don’t want my words to escape me when I need them most.

Or that the loss of verbal ability I experience when trying to talk to someone, isn’t ‘just a matter of choice’ or ‘obstinacy’.

It’s a genuinely, real, experience.

Yet give me a keyboard and I’m perfectly fine.

I can write for hours and when I do, words just seem to flow out of me.

There’s no grasping or grappling furiously for a language that is no longer there.

There’s no effort, no strain, no awkward silences.

There is only the freedom of expression.

The freedom of being me.

Does anyone else experience this level of disparity between the things you can do in one medium, yet not in another?

People with Autism want real friends too.

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This is true however; friendships can turn out to be incredibly one-sided and eternally complex for girls with Asperger’s Syndrome.

Often girls with Asperger’s Syndrome feel as if they have to hide who they really are in order to fit in and be accepted by their peers.

As a consequence of this, they often find themselves enduring conversations and situations that they really, don’t want to be in.

This is how my daughter describes the sense of complexity that friendships create for her.

“I like being with my friends ….

Sometimes….

But sometimes being with my friends just means that….

I have to do my hair,

And put on clothes that aren’t all that comfortable….

Just to listen to them talk about boring things…..

Or do things that I don’t really want to do…..

In places I don’t want to be….

Just to fit in….

Sometimes…..

I’d really like it if my friends could just come to my house,

Where I can wear my comfy clothes,

And do the things with me,

That I want to do,

I wish they’d just simply try,

Letting me be who I am,

How I am…..

Without judging me for being different……

So yeah, sometimes….

I like being with my friends…..

But I guess sometimes….

I just get so tired of always having to try,

Not being me,

Just to fit in.

I wish that they could see how boring fitting in,

Is to me.

Someday ….

I hope I have friends that want to fit in with me,

Instead of it always being the other way round.

That’d be really nice.”