Asperger’s Syndrome’s missing trait

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

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

Signs like:

‘difficulties with social interaction’,

‘dislike of small talk’,

‘poor co-ordination’,

‘fixation on special interests’,

‘preference for spending time alone’

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

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

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

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

And that trait is:

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

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

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

                “Different is something I’ve always been.”

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

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

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

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

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

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

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

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

Do you ever feel different?

Does this post ring true to you?

Have you always felt different?

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Born This Way – Longitudinal Study Finds Evidence that Introverts Are Born – Not Made.

Artwork by Alina Kim
Artwork by Alina Kim

A series of ground-breaking longitudinal studies conducted by developmental psychologist Dr Jerome Kagan, suggests that introverts are born, not made.

An ongoing study, begun in 1989 by Dr Kagan, documenting the temperamental and physiological characteristics of a group of children from infancy right through to adolescents has provided clear physiological evidence that a subset of infants as young as 4 months old, are capable of displaying stronger responses and therefore stronger levels of awareness,  known as ‘hypersensitivity’, toward external stimuli, than other infants of the same age.

After observing and measuring the emotional and physiological responses (heart rate, blood pressure and other physiological indicators related to the amygdala), of 500, 4 moth old infants to new and unexpected sights, sounds and aromatic stimuli, Dr Kagan predicted that the 20% of infants within his study who responded to the stimuli by showing signs of ‘hypersensitivity’ or ‘hyper awareness’, would, most likely, become introverts.

Dr Kagan’s hypothesis centered on his theory that introverts are people who are keenly aware of, and therefore more profoundly impacted on, by external stimuli.

The higher the degree of ‘hypersensitivity’ an individual experiences towards sights, sounds, smells, and the closeness of other people, the more likely it is that those same individuals will seek to avoid them.

Hypersensitivity both creates and explains why introverts hold such a strong preference for seeking out quiet, serene and unpopulated spaces in which to live and work.

Accordingly, Dr Kagan surmised, the more awareness and responsiveness towards external stimuli an infant demonstrates, the more likely it is that the infant is showing signs of ‘hyper-awareness’ and ‘hypersensitivity’ toward their environment.

Hence those infants who respond the most robustly when introduced to new stimuli, were according to Dr Kagan’s initial hypothesis, also the most likely to become introverts. But was he right?

Over the course of the following years, Dr Kagan met with and studied the responses of the same initial infants as they grew. At the ages of 2, 4, 7 and 11 years, the children returned to Dr Kagan where they were once again exposed to new and unexpected stimuli in the form of events and people.

As Dr Kagan had predicted, those who displayed the highest degrees of physiological and emotional hypersensitivity towards external stimuli as infants, had indeed grown into quite, reserved and thoughtful individuals whilst those who responded the least to the same external stimuli, had grown into relaxed, outgoing and gregarious individuals.

But what made Dr Kagan think that there may be a connection between hypersensitivity and introversion in the first place?

His scientific background provides the explanation behind both his initial hypothesis and his decision to measure the key sets of physiological responses that he and his team recorded, which all link directly back to an area inside the brain called the amygdala.

One of the key areas of scientific interest surrounding the amygdala is its connection to our ‘fight or flight’ responses. It is the amygdala’s job to send out the messages to our nervous system that trigger our ‘fight or flight’ responses.

The amygdala quite literally controls whether or not we will feel safe and secure or scared and threatened, when exposed to new or unexpected stimuli.

The more highly reactive our amygdala becomes, the more likely we are to feel threatened and become hyper vigilant, when confronted with new situations. This means that those with hyper sensitive or highly reactive amygdala’s are more likely to exhibit other symptoms of discomfort when confronted with new situations including increased heart rate, tightening of the vocal chords and having their bodies flooded with the stress hormone cortisol.

This combination creates an overwhelming sense of nervousness, anxiety, discomfort and fear in those individuals who experience it.

These are exactly the same physiological and emotional markers measured and observed by Dr Kagan within his longitudinal study of infants.

Dr Kagan therefore successfully linked hyper activity within the amygdala to the responses of hyper sensitivity observed within a subset of infants, during exposure to external stimuli. Given that his initial hypothesis was that he could predict, via their responses, which infants were more likely to become introverts, he also linked the key features of introversion to both hyper activity within the amygdala and hypersensitivity toward external stimuli.

In doing so, Dr Kagan found a direct correlation between biological response and social response which indicates that the origin of introversion is biological and not, as had been previously suggested, social, cultural or psychological.

Introversion is therefore the result of nature not nurture. Not a taught response but a biologically driven, natural one.

Dr Kagan’s study not only significantly highlights the need for our society to extend its understanding of the biological mechanisms of introversion, but also the need to be aware that an individual’s predispositions towards introversion should no longer be being viewed through the lens of wither wilful ‘choice’ or ‘personality type’.

His study clearly indicates that introverts are not people who simply ‘choose’ to live ‘far from the maddening crowd’, but rather are a legitimate subset of the population who experience a very real, biologically driven aversion toward our over crowded, over-stimulated, 24/7, modern-day society.

As such, introversion needs to be understood as a hardwired, physiological and naturally occurring set of neurodivergent responses toward external stimuli, as experienced within a subset of the population.

Introversion should be seen as a legitimate way of being and introverts viewed as people who, like everyone else, are striving in their own ways to flourish and succeed within a world that constantly offers up additional challenges, due specifically, to their unique way of being.

Therefore, introversion should be viewed as being yet another variation within the vast array of neurodivergent conditions, right alongside  Autism, which serve to make up the spectrum that is,   the human condition.

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

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.