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

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.

Autism – Absurdities and Atrocities

Artwork by JudasArt

Artwork by JudasArt

Voltaire once wrote: “ Those who can induce you to believe in absurdities, can induce you to commit atrocities.”

Nowhere is this statement more relevant than when looking at the many perceptions of the causes of Autism.

For example, consider the following two statements regarding Autism.

  • People with Autism experience the world differently due to the impacts of a disease process. This disease process can be cured. Therefore Autism is a condition that we, as a society, have a duty to either eradicate or overcome.

  • People with Autism experience the world differently due to neurological variances that are hard-wired within them at birth. Autism is not the result of a disease process which can be cured. Therefore Autism is an aspect of life that we, as a society, have a duty to seek to understand, respect and accommodate.

Which of the above statements do you believe to be the least absurd?

If you agree that the first statement is the least absurd and therefore, (in your eyes, most likely to be true), then chances are that you will do and try almost anything to either cure or rid yourself or your child of Autism.

The past 50 years have shown that attempts to cure “the autism” out of a child or an adult have had disastrous results.

Yet attempts to cure “the autism” out of a child or adult continue. Some involve relatively harmless and repetitive therapies that do appear to help assimilation.

However, some attempts involve subjecting children and adults with Autism to debilitating, humiliating and ultimately mentally and physically harmful forms of abuse.

Such as forcing persons with Autism to drink bleach, delivering painful punishments, such as kicking, punching, whipping or starvation, to persons with Autism for displaying undesirable behaviors or subjecting them to intense isolation and deprivation of liberty by locking them in rooms or cages.

All of which should be considered crimes against humanity and therefore seen as atrocities.

If you agree that the second statement  is the least absurd and therefore, ( in your eyes), the most likely to be true, then chances are that you will do and try everything you can to be better understand and accommodate for either your own or your child’s Autism.

Over the last 50 years the voices of those with Autism have continuously cried out for understanding and acceptance.

A key aspect of accepting the potential that children and adults with Autism process the world differently involves making the attempt to understand what those differences are, how they impact the individual with Autism and then accommodating for them respectfully.

Accepting and making accommodations for adults and children with Autism , whether that be providing them with safe, quiet places , pressure blankets, clothing without tags, or specialized educational programs, is both respectful and beneficial.

The practice of providing acceptance, respect and accommodation breaks no laws, perpetrates no crimes against humanity and therefore does not induce anyone to commit atrocities.

I prefer statement 2.

How about you?

P.S  I am aware that some may argue the possibility of a third statement in which Autism could be considered a curable disease whose sufferers should be treated with both consideration and respect whilst they are experiencing its disease effects. However, the propensity of those who support statement 1 toward the overall aim of ‘curing autism’ places many adults with Autism, who not only accept their differences but are increasingly proud of them, at odds with such beliefs.

The Price of Conformity

conformity

“I think the reward for conformity,

Is that everyone likes you,

Except yourself.” -

Rita Mae Brown

If this quote speaks to you then speak out,

Because the price that we are all paying,

For our continued silence,

Is simply way too high.

It’s time to teach our children,

That being different,

Isn’t the same,

As being bad.

It’s time to teach our children,

That it’s okay for them,

To be,

Exactly who they are,

In whatever way,

They are,

And that no,

One,

Particular way,

Of being in this world,

Is more valid,

Correct,

Or worthwhile,

Than,

Any other.

“The Extreme Male Brain?” Questioning The Gendering of Autism.

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“In 2005, autism researcher Simon Baron-Cohen opened a New York Times article with the following statement: “By studying the differences between male and female brains, we can generate significant insights into the mystery of autism” (Baron-Cohen). What makes this statement possible, rhetorically, is a process of gendering that has made autism spectrum disorder (ASD) into “The Male Condition”—the title of Baron-Cohen’s piece.”

“Autism is an example of what Judy Segal calls a rhetorical disorder: in the absence of clear biological markers for autism, “discourse fills the space that certainty in medicine leaves unoccupied.”

“in 2010 the APA released working notes for the DSM-V, which offered new criteria for autism and placed Asperger’s syndrome (heretofore a separate disorder) within the umbrella category of ASD. Such a shift would be fundamentally rhetorical, in that it is enacted through language, persuading practitioners to categorize individuals in a new way.”

“Autism is shaped in part by “social meanings, symbols, and stigmas” attached to it. What makes this process unique, in the case of autism, is that these social meanings do not merely demarcate the “normal” (or neurotypical) from the “abnormal” (or neurodiverse); instead, they also differentiate between men and women, in such a manner that the “male condition” is pathologized alongside the autistic condition.

“ In the case of the EMB theory, this commonality stems from the fact that more boys than girls receive autism diagnoses, by a ratio of 4 to 1. These statistical facts, though, are extended to the disorder itself, where maleness is applied to the brains of individuals with autism. In the process, researchers espousing this theory construct a scale, drawing on the rhetorical figure of incrementum, or scale, which positions women, men, and people with autism along a continuum according to the degree to which they possess some quantified trait.”

“An incrementum is simply a scale, but one that can be used for rhetorical purposes. For instance, if we claim that men tend to be heavier than women, who tend to be heavier than children, we have constructed an incrementum, ordering those three groups according to weight. This claim might seem noncontroversial, but imagine constructing a scale in which we measure intelligence, instead, and order individuals according to sex. That type of scale can support a range of unsavory arguments for policies of all sorts, and would be fundamentally rhetorical both in its construction and its use.”

“Sex and gender offer readily available lenses for understanding autism because they are “present” and by referencing culturally specific notions of sex and gender, researchers make those elements hyper present, and, in the process, obscure others.”

“Late twentieth-century rhetorics of technology, gender, and the service economy make it possible to order individuals along new scales, including technological ability and emotional intelligence.”

“ These scales have shaped scientific understandings of autism in ways that direct the attention of researchers to some aspects and deflect attention away from other important issues, including alternative scientific theories, the interests of girls and women with autism, and the issues deemed most important by autistic people themselves.”

This article consists of excerpts from an academic paper written by J. Jack and published in 2011.

 

Why Are Children with Disabilities Still Being Bullied and Marginalized within Education?

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“Many disabled children fail to reach their full potential because they continue to be marginalized in schools, health and social care, according to new research funded by the Economic and Social Research Council (ESRC).

“We found that disabled children often experience discrimination, exclusion and even violence,” say Professor Dan Goodley and Dr Katherine Runswick-Cole, who implemented the study at the Manchester Metropolitan University. “The biggest barriers they meet are the attitudes of other people and widespread forms of institutional discrimination.”

“Disabled children are seldom allowed to play and act like other children because of concerns about their ‘leaky and unruly’ bodies. But our study shows that many children who don’t fit the narrow definition of ‘normal’ have untapped reserves of potential and high aspirations which can be fulfilled when their families receive effective support. There are also many amazing families who should be celebrated for the way they fight for their children.” continues Professor Goodley.

The aim of the Does Every Child Matter, post Blair? project was to find out what life is like for disabled children and young people in the context of policy changes set in motion by the New Labour Government after 1997. The Aiming High for Disabled Children policy agenda was intended to enable disabled children to be ‘healthy’, ‘stay safe’, ‘enjoy and achieve’, ‘make a positive contribution’ and ‘achieve economic well-being’.

The findings, which are based on a series of interviews with disabled children and their families, reveal numerous barriers to these goals, for example:

  • Disabled children are often perceived by educational and care professionals as “lacking” and as failing to fit in with the image of ‘normal’;
  • Families who do not match the norm are frequently excluded from friendships, education and work;
  • The support system is complicated and there are gaps in provision, particularly during the transition to adulthood;
  • Physical access and transport barriers to sport and leisure activities result in segregation, while participation in art and creative activities is limited;
  • Widespread discriminatory attitudes threaten to create a culture of bullying;
  • Families of children with life-limiting/threatening impairments often experience isolation and poverty

The researchers call for a change of attitude towards disability so that diversity is not only valued, but promoted. “There is an ‘epidemic’ of labelling children as disabled,” Professor Goodley and Dr Runswick-Cole warn. “Parents are repeatedly under pressure to talk about what their children can’t do in order to access services and support, but sometimes the label can obscure the individual. Families should be asked what support their child requires, not what is the ‘matter’ with him or her.”

Their report recommends that policy should prioritize enabling disabled children to break down barriers by supporting their participation in education, the arts, leisure and their communities and by meeting their communication requirements. “We need to re-think the culture of individualism and performance which pushes disabled children out” continue the researchers. “Pressures on schools are getting worse. We found a case where parents of non-disabled children petitioned to exclude a disabled child. What does this say about the meaning of education and community?”

The study found that bullying is often accepted as inevitable when disabled children are perceived as vulnerable. There were several layers of violence, from manhandling in school to psychological bullying, which often goes unnoticed by adults. Some children do however stand up to bullies and refuse to be limited by labels that are imposed upon them.

One young person insisted on attending Brownies meetings alone, despite health and safety rules that required her mother to accompany her. “Kids seem to enjoy challenging people’s expectations about their limitations,” the researchers commented.”

Originally sourced from http://www.esrc.ac.uk/news-and-events/press-releases/18605/disabled-children-do-matter.aspx

 

A Different Life – By Donna Woods

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Before you were born
 I imagined how it would be
 And what I'd say to you
 And what you would say to me
I pictured what we would do
 And I planned what life would hold
 But all of that had to change
 The day that I was told
A different life awaited us
 From the one that I had thought
 And a lesson in Autism
 Was going to be taught
Things would be difficult
 And times could be tough
 I would sometimes wonder
 Why my love is just not enough
But then I'd come to realise
 That the journey that we're on
 Is just a different route
 And it sometimes may feel long
I'd have to think of other ways
 To meet the dreams I'd planned
 Autism had placed me
 In a new and mysterious land
We could still have fun
 And we could still learn
 Even if some days
 I didn't know which way to turn
Although life was different
 I'd make sure it was complete
 I wouldn't give up on life
 And I wouldn't admit defeat
There would still be a world out there
 For us to seek and explore
 And for you I would do anything
 My special child who I adore
Before you were born
 I planned our life together
 And I'll be there to hold your hand
 Today, tomorrow and forever

© Donna Woods 2013

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