Beyond Human

Artwork by Patrice Muricano

Artwork by Patrice Muricano

There is a sense of  longing,

Which envelopes me,

On a regular basis.

It’s more than just,

The longing,

To be accepted.

It runs,

So much,

Deeper,

Than that.

It is the longing to be understood.

To be so completely and utterly known,

By the mind of another,

That no word,

Should ever,

Again,

Be,

Required,

To,

Explain,

Who I am,

How I am,

Or,

What,

I,

Am,

Beyond,

Human.

‘Appearances can be deceiving’

Artwork by Brandon Scott

Artwork by Brandon Scott

“You cannot determine a person’s intellectual capacity, personality, political view or personal interests,” based on their appearance alone.

Nor can you accurately “assess a person’s character by noting whether or not they are fit, fat, frail, thin, old, young, able-bodied, disabled, black, white, tattooed, male or female.” Quotes from T. Moss

It is entirely irrational to believe that one can judge the character of another person, based purely on their appearance.

We know this.

Yet there are still so many people out there who believe that they can judge the capacity of an individual with Asperger’s Syndrome / Autism, to feel love, joy, compassion and empathy, based on little more than an observation of our facial expressions or the focus of our eyes.

Please stop doing this.

We’ve already explained to you, that for us, making eye contact can be difficult and that often, our internal feelings do not match our external expressions.

So please stop judging us based solely on your interpretation of our appearances.

Or haven’t you heard?

‘Appearances can be deceiving.’

And we should know, because you’re the ones who taught us that.

When it comes to plastering on a  ‘fake smile’ and pretending that ‘there’s nothing wrong’,  you guys are the experts.

Not us.

Never-the-less, we’re not judging you.

Or calling you cold-hearted liars, simply because you can all smile, without even wanting too.

You see,  life has already taught us that sometimes in this world, it’s not how you look, but what you see, that makes all the difference.

So try seeing us differently.

Please.

Thank you.

 

Autism – We Share A Label – Not A Life

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Each and every person lives a life that is unique to them. Therefore, even though we may all experience life with Asperger’s / Autism, it does not automatically follow that we also experience every  aspect of  ‘life’ or Autism, or even ‘life with Autism,  in exactly the same ways.

One person’s lived experience, knowledge and truth, is exactly that.

One person’s.

We are all born into different circumstances.

We all have different experiences, learn different lessons and gleam different aspects of knowledge and truth, based on these experiences.

Sharing similar ways of interpreting or understanding the world around us, is not the same as ‘living the same life.’

We share a diagnostic label, not a life.

Please recognize and respect this fact and stop trying to ascribe the understandings, beliefs and personal preferences of one individual with Autism, to all individuals with Autism.

We are not mirror images of each other.

We are all different.

And we deserve to have our differences understood and treated with respect because our differences matter.

For example, the experiences of an adult female, diagnosed later in life, will be very different to those of an adult male, diagnosed early in life.

Whilst one may have grown up feeling ‘lost’, ‘alone’ or made to feel ashamed of her differences, the other may have grown up with all the benefits of self-understanding, self-awareness and being encouraged to take pride in his ‘different-ness’.

While each individual’s experience needs to be understood as being equally valid interpretations  and expressions of what it is to live an Autistic life, they also equally need to be understood as being validly different.

The act of preferencing one set of experiences over the other, leads to the negation of not just one narrative, but to the negation all narratives that do not fit neatly within the confines of that which becomes the preferred story of the‘ Autistic experience’.

Just to be clear on this, there is no correct way to experience Autism.

There are instead, many equally valid, equally real and equally genuine ways to experience Autism.

Yet some within our society continuously seek to preference and promote only one particular version of Autistic life.

We cannot and should not allow either ourselves or others, to fall into the trap of ‘negating’ the many difference to be found within in the Autistic experience, simply because it’s being presented to us under the guise of ‘creating Autism awareness.

All Autistic experiences are valid regardless of age, gender or socio-cultural and economic influences.

To believe that any one experience is any more important or worthwhile than another is to perpetuate both the myth that there is a ‘correct way’ to experience Autism, and that all ‘Autistic people are the same.’

We’re not.

We share a diagnostic label.

Not a life.

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

Lost and Found in Autism

Artwork by Sameer

Artwork by Sameer

 

Many of the misunderstandings concerning what Low Functioning Autism actually is and how it impacts on the lives of those who experience it, have arisen due to the manner in which the words of those with High Functioning Autism, have been digested and held up to the broader community as a shining example of how all forms of Autism should be treated.

Yet the fact that this happens so frequently is not the fault of Adults with High Functioning Autism, but rather the by-product of several different organizations attempts at delineating or hi-jacking, the Autism debate.

As a parent, I know myself how easily our emotions can be manipulated because I too, in the past, have fallen into the same trap of raging against the perceived words of those on the High Functioning end of the Spectrum, particularly whenever I felt that their views provided no sense of understanding or  justice, for the way in which my son experiences  Autism.

Yet, at the same time, I have also gained  a deep sense of solace, comfort and understanding from actually listening too and attending workshops run by individuals with Autism like Wendy Lawson.

I wondered how it could be that the words of Autistic Adults could simultaneously cause me to juggle so many different perspectives.

Often I felt caught, trapped  in a web of half spun truths, suspended somewhere between rage and understanding, fear and insight,  lost and found, over and over again, in the land of Autism.

Lost, when it came to understanding my son’s experiences.

Found, when it came to recognizing my own experiences and understanding my daughter.

If  it hadn’t been for the writings of adults with Asperger’s Syndrome, or High Functioning Autism, I would never have begun to discover my own place on the spectrum.

Nor would I have been able to see the signs of Asperger’s Syndrome in my daughter.

Or have had the information necessary to encourage those health professionals around me to take my concerns for my daughter seriously.

I acknowledge that I owe a huge debt of gratitude to every Autistic Adult, both Low and High Functioning, who’s  been willing to speak out.

It is because of their strength and their insight, that I now understand, not only myself, but my entire family on a much deeper level than I would ever have achieved without their wisdom.

They’ve also helped me to understand that when those adults who do speak out, actually take the time and the effort to do so, it is often at a great personal cost to themselves.

They often suffer the indignity of having their words recklessly bandied about  or deliberately misconstrued for the purposes of others agendas.

Yet they can no more choose how the world at large will interpret their words or control how their ideas may be manipulated or distorted within a campaign of misinformation, without their knowledge,  anymore  than a river can control an ocean.

Even though I know that the world at times, spins on its own axis of denial and deceit, and that none of us can predict where and how, or in whose ears, our words will land, I still occasionally find myself wearing my outraged mother’s hat for a very different reason.

You see, I know that the truth is, that in our family, we all experience Autism very differently.

My son’s experience of Autism is vastly different to my own experience of Autism and that of my daughters.

The similarities between us are few and the differences between us can be as stark as night and day.

Autism has manifested within all of us in differing ways.

Our own individual journeys towards understanding  Autism also bear little to no patterns of similarity.

My son was diagnosed at 4 years of age.

My daughter at 13 years of age.

And I in my 40’s.

So I think what we most need to understand when it comes to Autism Awareness and Acceptance, is that there are no hard and fast rules as to how it will either impact on a life, or how those impacts will in turn, be understood by the people around us.

Some like my son, will be impacted upon profoundly, others like myself, may live a life of otherness for 40 years without ever understanding why, and those like my daughter, will live a life where she can revel in her quirkiness because she has  been given, that still rare and exceedingly precious gift,  of being able to understand why she’s different.

I know that we, as a family, have all benefited from the wisdom of others with Autism.

Just in different ways.

So to me, whether or not adults with Autism have anything valuable to say is no longer the question, for I know that adults with Autism have valuable insights to share.

The question I think that’s more pertinent for today’s Autism debate is:

Which organizations or individuals are using the knowledge derived from adults with Autism and just what are they using the words of those with Autism to say?

Yes – Asperger’s may present differently in women – but…

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I’m still not sure what to make of this notion (now being presented to us as an absolute fact), that women with Autism/Asperger’s Syndrome are being diagnosed less frequently, due to their apparently inherent ability to ‘mask’ their symptoms by ‘mimicking’ those around them.

There are just too many assumptions hidden within this concept that have not been deeply analyzed enough for my liking.

It almost seems like once again, we as women, are being told to turn a blind eye to any and all personal experiences that do not match up succinctly to the now, almost biblical accounts being written by psychologists, as to how women with Autism should present.

Accounts that not only seek to define our presentation, but come complete with a rationale as to why our supposedly ‘hard to spot’ tendencies have, for so long been so tricky, that it’s entirely understandable, and therefore forgivable, that we’ve been over-looked by the very profession that has at last finally deemed us worthy of recognition.

Call me a cynic, but I can’t help but feel that there’s something a little too psychologically tidy and self-serving lurking somewhere beneath the surface of all this.

Yes, Asperger’s may present differently in women, but just how differently and why those differences occur, are issues that I believe should still be up for debate.

As it stands at the moment, there are women in their 60’s who are now finally being diagnosed with Autism after living through decades of feeling disconnected and different, rejected and misunderstood by their families and enduring years of being misdiagnosed by professionals.

So how can it be that the same professionals, who have clearly recognized the level of difference, disconnect and/or difficulties with sociability that these women experienced, at least enough to have diagnosed them with depression, bipolar or personality disorders, now suddenly see fit to turn around and make the bold claim that Women with Autism ‘mask’ their symptoms?

If these women were ‘masking’ their difficulties/symptoms so well, then how come they were misdiagnosed with any psychological conditions at all?

The only evidence of ‘masking’ to found within these revelations, comes not from the women, but from the psychologists who were unable to accurately diagnose them due to their own erroneous belief, that women could not experience Autism.

Which of course is how psychologists, via their own actions in refusing to view such women’s behaviors as evidence of Autism, turned the notion that women do not experience Autism, into a very neat and tidy self-validating and self-sustaining psychological fact in the first place.

Only of course, it wasn’t a fact at all. It was nothing more than one profession dictating and reinforcing the terms and conditions under which it would see fit to operate.

By so doing they also set out the definitions and the frames of reference upon which the foundations our understandings of Autism were formed.

Which means that for decades, thanks to psychology, women with Autism were often left out in the cold, alone and confused, and more often than not, grossly misdiagnosed and subjected to harmful treatments.

It’s an incredibly sad but true piece of history and I can well understand why those within the world of psychology would like to pretend it hadn’t happen.

But ignorance, whilst it may be bliss for some, can prove to be incredibly dangerous for others.

I for one, have absolutely no desire to ever see this kind of history repeating itself again.

And yet..

Once again, our understanding of the way in which Autism presents in women is now being crafted in much the same manner.

Psychologists are telling us that women ‘mask’ their Autistic symptoms, hence the majority of the population will believe that this is true.

Yet history has already shown us that this notion of women ‘masking symptoms’ is not a particularly true one.

If, (as has been the experience of many older Autistic women), there has been a propensity within the psychology profession toward misinterpreting and therefore misdiagnosing Autistic women’s symptoms, then they should already have in their grasp, the many well documented cases of older Autistic women who’ve been misdiagnosed with other mental health conditions in an attempt to explain their ‘different’ behaviors.

This in itself, should be enough to indicate that the notion of women ‘masking’ their symptoms may not be entirely true.

After all, one cannot be misdiagnosed with a mental health condition if one is not showing any indications or awareness of having behaviors that would mark one out as being ‘different’ or in need of a diagnosis.

So are we to believe that these older women were just a rare bunch who were exquisitely bad at ‘masking’ their symptoms, because let’s face it, if they were actually trying to hide their differences and their difficulties, yet still ended up being diagnosed with a mental health condition, they must have been exceptionally bad at?

Or are we to listen to their eyewitness accounts and give ourselves permission to explore these hidden implications?

I for one, am in favor of taking the time to listen to the real life experiences of our older Autistic women, the ones who are only just now, after years of struggling to find answers, being acknowledged and diagnosed with Autism.

If we do, we may just find ourselves questioning the validity of the idea that women with Autism have a history of ‘masking’ their symptoms.