Women with Autism – Beware we wear masks (well supposedly anyway).

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I think it’s interesting that many of the articles I’ve read all state, in one way or another, that girls and women on the Autism Spectrum are hard to diagnose because they “mask” their symptoms.

Yet when I look back on my life I don’t see any evidence that I “masked” any of my symptoms at all.

In fact, more often than not, my symptoms/differences were repeatedly pointed out to me and criticized by others.

So what I tend to see, when I look back, is the exact opposite of the claims made by others that women and girls “mask” their differences.

All throughout my  childhood  there is clear evidence that although those around me knew that I was ‘different’, no-one was prepared enough to take any steps toward understanding either how or why my behaviors were so different to those of the children around me.

So for me, I find the statement that girls/women on the Autism Spectrum “mask” their ‘differences’ to be both a very misleading and a potentially harmful one.

One that in a round – about kind of way, ends up placing the blame for the lack of awareness regarding females with Autism, right back at our own feminine feet.

After all, we were the tricky ones who were supposedly “masking” our own behavior’s in order to evade detection.

Is it just me or is anyone else  beginning to feel slightly perplexed by the repetition of this very insidious form of circular  reasoning?

 

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Autism/Asperger’s Awareness in Women – A Teenagers Perspective – Written by Marnie

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“I wrote this for an all-girls group I am part of and thought that maybe I should share it and see what others have to say. Be nice ok. It took a lot for me to be able to talk about this.”

Autism and Asperger’s displays itself very differently in woman than it does in men.

Most Autistic traits in males are very obvious, they don’t hide them and it’s very clear.

With women, we actually subconsciously try to hide it, it’s in the female nature to fit in; you may find you mimic your female friends in different ways.

For example, you might copy certain phrases they use, figures of speech, accents, physical stances and behavioural habits.

I, for one, used to copy my friends self-harming and it wasn’t to get attention, it was because I assumed this was normal behaviour for other girls.

When I was in primary school I tried to fit in by soaking up every bit of knowledge about makeup and hair that I could because at the age of 7 years old I thought  this would stop girls from picking on me.

It didn’t work; it made them hate me because I knew more than they did.

Go figure.

I ended up hanging out with all the boys, playing rugby, play fighting and developing a very masculine attitude towards sports.

I LOVED running, I ADORED horse riding and even at a young age I felt that the ache that you get after a long trek on horseback, was the best thing in the world.

Even at the age of 11 I had this attitude, hell I even secretly loved the smell of sweat.

I also loved the smells at my friend’s farm because it smelt right.

I was still trying to fit in with the girls though, so I started wearing a bra to get noticed and saying that I had developed a crush on the boys, even though I hadn’t.

To me, boys were just there to be jumped on and knocked around and generally enjoy a good old rough n tumble with.

When my only female friend and best friend moved down to England I changed.

I wouldn’t speak to anyone because I felt as though someone had wrenched something out of my chest.

The girls who picked on me realized that I was extremely vulnerable so they took me under their wings and then threw me in the dirt for fun.

So I turned to books and the Harry Potter books saved my life.

I would sit and read ALL the time, hell I learned to walk while reading, write and kick a ball all at once.

I had a talent for reading and literature at school and was a total bookworm but I couldn’t do maths if my life depended on it. This made school very difficult for me.

In primary school I had a very nasty, abusive teacher and this together with the fact that I lost all my grandparents in the space of 5 months, meant that I fell behind in my school work.

I was moved to the Secondary School in the next village because of how horrendous the bullying of me had become.

The school there was filled with kids who were mostly brought up out in the middle of nowhere, on farms, so I got on amazingly with them!

Unfortunately at this point I had stopped horse riding due to my parents using it against me to get me to do simple things like cleaning.

I got bullied for a while during my first year there but I soon learned to stick up for myself, realizing the teachers here would actually do something (the head in primary school ‘solved’ bullying with a group hug and when physical contact scares the shit out of you anyway, it does not help) and the teachers didn’t look down at you.

In second year I had a fantastic English teacher who figured out I wouldn’t do homework but if she gave me clear instructions during class and made it interesting, I could get it done in 30 minutes flat.

She was, and still is, my favorite teacher. She was feared by most students but I adored her, she understood me.

I still struggled with maths and it caused me many issues.

I adored art, I wasn’t good at it but I loved it, especially my friends artwork because it was beautiful and I liked to just sit and look at the seniors artwork because it never failed to amuse me in one way or another.

I didn’t do well in P.E. because it meant someone was telling me how to do sport and that someone would be watching my every move, but I was exceedingly good at skiing, badminton and running.

If a teacher suddenly changed what we were going to be doing, it often ended in a full-scale meltdown because it made me uncomfortable.

By this time, my parents had noticed that I was becoming withdrawn, depressed and generally not my usual self.

So, I was being looked at for depression but I had too many happy moments to be ‘properly depressed’. Then I was being looked at for Bipolar disorder and this is when things got really interesting.

The woman seeing me about this was puzzled, I showed all the right symptoms but in her eyes something didn’t match, there was something missing.

Sure, I had insane mood swings but I also had social anxiety issues, if I got stressed I became physically ill (usually cystitis).

I was exceedingly intelligent but the knowledge was there in dribs and drabs, it never encompassed the whole of anything, rather it was filled by all of the  peculiar facts I clung to simply because I liked them.

I acted like a sponge for knowledge, though remembering that knowledge was a huge issue.

I showed signs of dyspraxia (Sp) and dyscalculia (sp) but not enough to make a definite diagnosis.

Then my little brother got diagnosed with Autism and they asked about me, mum said she had a light bulb moment and it all made sense.

Never getting over losing my one good friend, being easily distracted, not being able to handle large social groups, loud noises sending me into over drive and causing catastrophic melt downs, too much noise leaving me seemingly deaf, being scared of touch unless it’s invited by me, loving soft fluffy things, being overly sensitive to smells but not minding natural smells like body odour and farm smells, finding comfort in the company of animals more than people.

Well, the list goes on but it’s scarily hard to describe to a stranger what you are like when it takes 17 years before your problems are even noticed.

And Why?

Simple, males with autism have very prominent signs because the ‘hierarchy’ within men isn’t so severe.

Us women will do almost anything to fit in and to try to seem normal, so the girls with autism or Asperger’s strive to be like the others, to be ‘normal’, so it masks the majority of the signs.

They used to think Autism was less common in women but recently they’ve realized that the problem actually is that girls get misdiagnosed.

They get accused of being Bipolar/Manic Depressive or having attention deficit disorders or of just being plain weird.

You are NOT weird if you have an Autism Spectrum Disorder/Condition, you are different, you see the world differently and you have an AMAZING eye for truth.

You take things literally a lot, can’t tell the difference between sarcasm or being bullied at times, sure but you know what?

All you want is the truth; you strive for people to be honest, you NEED control, perfection and order or it stresses you out.

Nothing wrong with that.

It makes you YOU.

There are many other ‘disorders’ that pile on after you find out you have this, please don’t worry, its part and parcel of this amazing gift you have.

You may be ‘weird’ and you may feel like you don’t excel in the things you want to excel in but do you know why? It’s because people like us, have a tendency to be truly talented at something amazing.

You get autistic people who struggled with literature and creativity but are amazing at science, maths and things really involving raw intelligence.

Then there are autistic kids (like myself) that struggle with raw intelligence but adore literature, writing and using your creativity in art or music.

I still haven’t accepted myself for who I am because when I got diagnosed, I lost all of my friends.

I found out the hard way that they were judgmental and easily lead by a bully.

You may feel weird but I promise you, you are an amazing person.

You have such a unique way of seeing the world around you; you don’t need to fit in with that crowd of popular kids because they are false.

You like the truth, you need it.

I know this seems like a ramble but it’s how my mind works. Due to having Asperger’s I don’t really answer questions straight up, I ‘waffle on’, as one of my other English teachers was fond of saying to me.

But please, never be ashamed of having Asperger’s or Autism or of being on the spectrum at all.

If you have family members who are on the spectrum, please respect them; be honest with them because all they want is the truth.

Don’t make promises you can’t keep, if you break a promise to someone on the spectrum, it’s kind of like you broke the law.

Respect that we can be very edgy about our ‘personal bubbles’ at times while at others you might end up with us scrambling onto your lap for a cuddle simply because we are cold and you happen to be warm and squishy.

Respect that we don’t like loud noises, we can’t concentrate on more than one sound like most people can and it will confuse us.

Respect that we may have habits like, rocking, spinning, jumping, dancing, humming, snapping fingers and making silly noises.

We don’t mean to be annoying but when we get excited or depressed these things calm us down or express our need to show you we are excited.

Respect that if you have something colourful and pretty we might take it from you or stare at it because we have become entranced by its beauty.

Respect that if you take us outside where there are flowers we will insist on running through them, touching them and we will get upset if you take us away.

Respect that if you smell good we might sit and sniff your hair or we might stare at our food simply because it smells amazing.

Respect that we might not eat something because it looks ‘funny’ or its texture is ‘squelchy’ or just plain wrong.

Sure we can be as weird as all get out, but I can promise you this, we will have you in stitches laughing at our oddities and tendency to turn around and whisper rather loudly “look at that woman’s make up! She looks like a walking talking orange!” or “You smell funny” and then walk off like nothing happened.

Don’t be offended, we don’t mean to be nasty; we are just honest and a little strange.

I hope this adds a little insight.

I hope you all read this and find it helpful or that it at least puts a smile on your face.
Marnie”

“DISCLAIMER: This is written from my point of view as a girl with Asperger’s Syndrome If you are a teenage girl please DO NOT SELF DIAGNOSE all of a sudden based on this information, please. It’s the worst thing you can do; having issues doesn’t make you cool.”

You can view Marnie’s original post and more of her amazing writing at: http://vampirefreaks.com/journal_comment.php?entry=8355153&fb_source=message http://www.wattpad.com/28148017-autism-apergers-awareness-for-woman

 

Women and Autism – How one woman’s letter to a psychologist finally helped her receive an ASD diagnosis after years of personal invalidation.

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This amazing letter was written by a woman who suspected that she may be on the Autism Spectrum, prior to meeting her psychologist for the first time. Here’s what she had to say.

“Dear Dr L—

I hope in this letter I can give you a more thorough explanation of how I feel, the way these feelings affect me and why I think a diagnosis and continued support would be beneficial to me.

I have an over-active mind and experience high anxiety.

I constantly see things at multiple levels, including thinking processes and analyse my existence, the meaning of life, the meaning of everything continually.

Nothing is taken for granted, simplified, or easy.

Everything is complex.

Being serious and matter-of-fact has caused me many problems and I have been told on numerous occasions that I come across as rude and/or abrupt.

Every year my work progress development report says that I would benefit from some kind of people management course, which to date has never happened.

Making friends or developing relationships has always been and still is very difficult for me.

As a child, I was convinced that I was away the day everyone decided who they would be friends with.

This has always been an area that has caused me confusion.

I still have a constant feeling that I am misplaced, isolated, overwhelmed, and have been plopped down in the wrong universe.

If I had friends, my tendency was to blindly follow wherever they went and to escape my own identity by taking on theirs.

I dressed like them, spoke like and adapted myself to his/her likes and dislikes.

I have had a couple of “friends” in my life for a very long time but I mostly talk to them online as I do not like leaving the comfort of my safe environment.

Even with people I know well I do not like being in their houses as my anxiety levels hit the roof.

I get agitated and uncomfortable not knowing what to say, what to do, if I’ve over stayed my welcome or would it be rude if I left now, have I stayed long enough.

This leads to seriously high stress levels, nasty thoughts in my head, sweating, increased heart rate and a sudden urgency to flee.

When I know I don’t have to be anywhere, talk to anyone, answer any calls, or leave the house, I can take a deep breath and relax.

Even something as simple as a self-imposed obligation, such as leaving the house to walk the dog can cause extreme anxiety.

It’s more than just going out into society; it’s all the steps that are involved in leaving–all the rules, routines, and norms.

Choices can be overwhelming: what to wear, to shower or not, what to eat, what time to be back, how to organize time, how to act outside the house….all these thoughts can pop up.

I struggle when I’m out with sounds, textures, smells and tastes, which in turn creates a sense of generalized anxiety and/or the sense that I am always unsafe or in pending danger, particularly in crowded public places.

There have been times in crowded places like shops where the confusion and anxiety has gotten so high that I have had to just say “I need to go” and have walked out and straight to the car to gather my thoughts and calm down.

Counting, categorizing, organizing, rearranging, numbers brings me some ease and has been with me ever since I can remember.

Over the years I have sought out answers as to why I seemed to see the world differently than others, only to be told I’m an attention seeker, paranoid, hypochondriac, or too focused on diagnoses and labels.

My personhood was challenged on the sole basis that I “knew” I was different but couldn’t prove it to the world.

My personhood was further oppressed as I attempted to be and act like someone I’m not.

I have children diagnosed with ASD and am concerned that I am not doing the best for them due to my own inhibitions.

Still I question my place in the world, even more so now that my son has a diagnosis of ASD and I see so many similarities between what he’s going through and my own personal experiences.

How can I help them to adapt and learn when I don’t know myself how to deal with the situations that are causing them the most problems?

I would really benefit from help in learning to deal with my issues.

Now that I understand the Autism Spectrum and am convinced I am well within the spectrum, the hope is that I will get support and advice can benefit me and allow me to help my children.

My hope is that through diagnosis and the support that should follow; I will be able to work on the areas that I lack the necessary skills for dealing with society, in.

If I can get help for myself it will put me in a better position to guide and help my children.

Apologies for the lengthy explanation, I hope I have given you the information you were seeking. If not please don’t hesitate to contact me.

Yours sincerely

Amanda”

 

Amanda is sharing this letter in the hope that it may help other woman avoid some of the pain and confusion she’s experienced in her own life. Thank you so much for your willingness to help others Amanda ❤

 

The Gendering of Autism – How a few deliberately biased questions turned Autism into a men’s only club.

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Since the 1980s, the prevalence of those with Autism associated with science, computing and other hi-tech industries, has once again singled out Autism as being a primarily male condition.

Diagnosing famous scientists, engineers, and computer scientists with autism has become both a parlour game and a cottage industry—Albert Einstein, Paul Dirac, Bill Gates, and Isaac Newton are among the most commonly cited in this category.

Contemporary understandings of geek masculinity have become one of the more common, gendered screens through which autism is now understood.

According to the Extreme Male Brain (EMB) theory of autism, people with autism possess hyper-male brains, therefore the existence and/or severity of their Autism, can be graded based on a scale that views those who are less adept at systemizing tasks (mostly women) as non-autistic, and those with extremely high systemizing abilities (mainly men) as being people with Autism.

To achieve this male and female interests are categorized as either “systemizing” or its opposite, “empathizing,” and then placed along a scale that grades from female to male to the extreme male (or autistic).

In particular, the EMB theory takes the form of a “double hierarchy,” in which an established series (e.g., male-female) forms the basis for a second series (systemizing-empathizing).

In a 2009 study Baron-Cohen co-authored with Bonnie Auyeung, et al., the authors provide these points of evidence for their extreme male brain theory:

-“The typical male brain is heavier than the female brain and individuals with autism have heavier brains than typical males”.

-“The amygdala is also disproportionately large in boys compared to girls … and children with autism have enlarged amygdala”.

Not only does this evidentiary criteria over emphasize differences between those with autism and those without; but it also forces males and females further apart by exaggerating the differences between average women, average men, and autistic people.

Further to this Baron-Cohen claims men are more interested in systemizing tasks, such as engineering, computer programming, and mathematics, or hobbies based on mechanics, construction, and categorizing—metalworking, boat-building, crafting musical instruments, even bird-spotting.

Whereas women tend to enjoy “having supper with friends, advising them on relationship problems, or caring for people or pets, or working for volunteer phone-lines listening to depressed, hurt, needy, or even suicidal anonymous callers”.

Based on these insights, Baron-Cohen devised a series of three tests:

-The systemizing quotient (SQ),

-The empathizing quotient (EQ),

-The Autism quotient (AQ).

All of which reflect his predetermined, gendered notions of male and female-appropriate activities.

On the Systemizing Quotient Test, testers are asked to rank their answers on a Likert scale to such questions as -“If I were buying a car, I would want to obtain specific information about its engine capacity” and “If there was a problem with the electrical wiring in my home, I’d be able to fix it myself”.

Meanwhile, the Empathy Quotient test includes such prompts as “I try to keep up with the current trends and fashions” and “When I talk to people, I tend to talk about their experiences rather than my own”.

In these prompts it can be seen that stereotypically masculine activities are assumed to reflect systemizing, while stereotypically feminine activities are assumed to reflect empathizing.

Clearly, these questions can easily be seen to reflect socialization as well as biology.

Therefore changing even a small number of the questions to more gender-neutral issues could have easily reduced or removed the sex differences found within SQ scores.

In 2006, Sally Wheelwright, Baron-Cohen, and their collaborators published a revised version of the SQ, the SQ-R, which included a wider range of questions about systemizing.

The original SQ, the authors admitted, “Were drawn primarily from traditionally male domains.” For this reason, the SQ-R included “more items that might be relevant to females in the general population,” a feature that would allow the researchers to determine whether men would continue to score higher on the SQ “even with the inclusion of items selected from traditionally female domains” (Wheelwright et al).

Some of the new prompts included “When I have a lot of shopping to do, I like to plan which shops I am going to visit and in what order” and “My clothes are not carefully organised into different types in my wardrobe” (answering “no” on this prompt presumably indicates an SQ type of brain).

The SQ-R successfully shifted the results. In the original SQ, men had a higher mean score on 86 percent of the questions, while women had a higher mean on only 13.2 percent. In the revised version, men scored higher on 68 percent and women on 32 percent—a rather dramatic shift in the sex ratio.

The SQ-R itself demonstrates that these sex differences may largely be an artefact of the testing prompts and the specific mix of questions applied.

One might therefore, hypothesize that the SQ could be revised even further in ways that would more drastically equalize the scores.

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

 

“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.

 

Theory finds that individuals with Asperger’s Syndrome don’t lack empathy – in fact if anything they empathize too much

Art work by Aegis Mario S. Nevado
Art work by Aegis Mario S. Nevado

“A ground-breaking theory suggests people with autism-spectrum disorders such as Asperger’s do not lack empathy – rather, they feel others’ emotions too intensely to cope.”

“People with Asperger’s syndrome, a high functioning form of autism, are often stereotyped as distant loners or robotic geeks. But what if what looks like coldness to the outside world is a response to being overwhelmed by emotion – an excess of empathy, not a lack of it?

This idea resonates with many people suffering from autism-spectrum disorders and their families. It also jibes with the “intense world” theory, a new way of thinking about the nature of autism.

As posited by Henry and Kamila Markram of the Swiss Federal Institute of Technology in Lausanne, the theory suggests that the fundamental problem in autism-spectrum disorders is not a social deficiency but, rather, a hypersensitivity to experience, which includes an overwhelming fear response.

“I can walk into a room and feel what everyone is feeling,” Kamila Markram says. “The problem is that it all comes in faster than I can process it. There are those who say autistic people don’t feel enough. We’re saying exactly the opposite: They feel too much.”

Virtually all people with autism spectrum disorder, or ASD, report various types of over-sensitivity and intense fear. The Markrams argue that social difficulties of those with autism spectrum disorders stem from trying to cope with a world where someone has turned the volume on all the senses and feelings up past 10.

If hearing your parents’ voices while sitting in your crib felt like listening to Lou Reed‘s Metal Machine Music on acid, you, too, might prefer to curl in a corner and rock.

But, of course, this sort of withdrawal and self-soothing behaviour – repetitive movements; echoing words or actions; failing to make eye contact – interferes with social development. Without the experience other kids get through ordinary social interactions, children on the spectrum never learn to understand subtle signals.

Phil Schwarz, vice-president of the Asperger’s Association of New England adds, “I think most people with ASD feel emotional empathy and care about the welfare of others very deeply.”

So, why do so many people see a lack of empathy as a defining characteristic of autism spectrum disorder?

The problem starts with the complexity of empathy itself. One aspect is simply the ability to see the world from the perspective of another. Another is more emotional – the ability to imagine what the other is feeling and care about their pain as a result.

Autistic children tend to develop the first part of empathy – which is called “theory of mind” – later than other kids. This was established in a classic experiment. Children are asked to watch two puppets, Sally and Anne. Sally takes a marble and places it in a basket, then leaves the stage. While she’s gone, Anne takes the marble out and puts it in a box. The children are then asked: Where will Sally look first for her marble when she returns?

Most 4-year-olds know Sally didn’t see Anne move the marble, so they get it right. By 10 or 11, children with developmental disabilities who have verbal IQs equivalent to 3-year-olds also get it right. But 80 per cent of autistic children age 10 to 11 guess that Sally will look in the box, because they know that’s where the marble is and they don’t realize other people don’t share all of their knowledge.

Of course, if you don’t realize others are seeing and feeling different things, you might well act less caring toward them.

It takes autistic children far longer than children without autism to realize other people have different experiences and perspectives – and the timing of this development varies greatly. But that doesn’t mean, once people with autism spectrum disorder do become aware of other people’s experience, that they don’t care or want to connect.

Schwarz, of the New England Asperger’s association, says all the autistic adults he knows over the age of 18 have a better sense of what others know than the Sally/Anne test suggests.

When it comes to not understanding the inner state of minds too different from our own, most people also do a lousy job, Schwarz says. “But the non-autistic majority gets a free pass because, if they assume that the other person’s mind works like their own, they have a much better chance of being right.”

Thus, when, for example, a child with Asperger’s talks incessantly about his intense interests, he isn’t deliberately dominating the conversation so much as simply failing to consider that there may be a difference between his interests and those of his peers.

In terms of the caring aspect of empathy, a lively discussion that would seem to support  Markrams’ theory appeared on the website for people with autism spectrum disorder called WrongPlanet.net, after a mother wrote to ask whether her empathetic but socially immature daughter could possibly have Asperger’s.

“If anything, I struggle with having too much empathy,” one person says. “If someone else is upset, I am upset. There were times during school when other people were misbehaving and, if the teacher scolded them, I felt like they were scolding me.”

Said another, “I am clueless when it comes to reading subtle cues but I am very empathic. I can walk into a room and feel what everyone is feeling and I think this is actually quite common in AS/autism. The problem is that it all comes in faster than I can process it.”

Studies have found that when people are overwhelmed by empathetic feelings, they tend to pull back. When someone else’s pain affects you deeply, it can be hard to reach out rather than turn away.

For people with autism spectrum disorder, these empathetic feelings might be so intense that they withdraw in a way that appears cold or uncaring.

“These children are really not unemotional. They do want to interact – it’s just difficult for them,” Markram says. “It’s quite sad, because these are quite capable people. But the world is just too intense, so they have to withdraw.”

Article written by Maia Szalavitz

Amazing original art work by Aegis Mario S. Nevado – http://aegis-strife.net

Article originally sourced and reproduced  from: http://www.thestar.com/life/health_wellness/diseases_cures/2009/05/14/aspergers

Other sources related to this article can be found at the following links.

http://www.thedailybeast.com/articles/2009/05/11/a-radical-new-autism-theory.html  http://www.telegraph.co.uk/health/2976839/Autism-is-caused-by-a-supercharged-mind-scientists-claim.html                                                                           

http://www.newscientist.com/article/mg19926741.700-do-supercharged-brains-give-rise-to-autism.html

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The gifts of being an Asper Girl – Why obsessions aren’t necessarily a bad thing.

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The Girl who couldn’t seek skin

“She loved him, though no one knew why.

“He is not of her equal; not of her kind.”

But what no one knew,

Was this one thing:

She was the girl,

Who couldn’t see skin.”

Written by Coco .J. Ginger

Whenever I read these words, I instantly think of my daughter and of how Asper Girls just like her, have a tendency to develop such strong passions for people, places and things that often go well beyond the need to see skin.

Whether it be a favorite, toy, an item of clothing, a blanket, a pet or an animated creation  like the digital avatars found on the ‘Sims’, Asper Girls often seem to have the ability to create deep emotional attachments to things that other people find hard to comprehend.

As a result of their abilities to forge such deep attachments to inanimate  objects, their passions are often described as ‘obsessions’.

But I don’t think lumbering Asper Girls with the idea that they suffer from having uncontrollable ‘obsession’ does them any justice at all.

I think instead, that Asper Girls are not experiencing ‘obsessions’ but rather they are forming deep emotional connections to things in ways that others just simply may not be able to comprehend.

For my daughter, the sort of deep emotional connections to inanimate objects that she forms, are to be found within the characters she creates on the computer game the ‘Sims’.

She can and often will, if left unprompted, spend hours and hours, even entire days, creating their avatars, constructing their homes,  their gardens, their pets, their friends, their wardrobes and virtually anything else she can think of that might make them feel more comfortable in their pixellated world.

She talks to them, creates entire personal histories for them and has been known to lament for hours on end over the fact that she herself cannot speak ‘Simian’.

To her, these artificial beings are very much a part of her world and there’s no doubt in my mind that she has formed a deep emotional connection with them.

After all they have become her ever-present friends in a world in which her lack of understanding others, and their lack in understanding her, can often leave her reeling.

So her artificial friends, those silly little avatars that many would consider to be nothing more than brief flights of fantasy, provide her with a great source of comfort and connection, especially on those days when everything just seems to be too much for her.

So I don’t consider the affinity she has with the characters on her game to be signs of ‘obsessional behavior’ at all.

Rather I view the connection she has with her Sims as evidence that she not only has the ability to engage in imaginative play, but that she is also developing that rare skill of being able to take a vision from her mind and make it ‘real’.

In doing so I believe she is displaying the gift of creativity.

And in my book, there’s absolutely nothing wrong with that at all.

Myths, Lies and Suspicious Minds – Debunking the popular misconceptions that surround the lives of adults with Asperger’s Syndrome

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Since first being recognized in 1944 by an Austrian paediatrician, Hans Asperger, the neurologically diverse disorder known as Asperger’s Syndrome, has  arguably become one of the most widely misdiagnosed, socially misunderstood and contentious disorders on the Autism Spectrum.

For this reason, those living with Asperger’s Syndrome often find themselves having to battle against a sea of erroneous professional and social misconceptions (myths) which leave them wide open to a consistent stream of criticism and suspicion as to who they truly are, their levels of ability, and the validity of their ‘unusual’ ways of being the world.

The aim of this article is to redress some of the myths that have sprung up regarding Asperger’s Syndrome  over time.

Myth 1: Asperger’s Syndrome is both an over and under Diagnosed condition that only affects males .

Since its addition to the DSM in the late 80’s researchers have contended that Asperger’s Syndrome is a condition that has been both significantly over and under diagnosed.

Given such paradoxical assertions, one could argue that contentions surrounding either the over or under diagnosis of Asperger’s Syndrome, appears to be very much dependent on which ever ways the  political winds of the time are blowing.

For example, there are some who contend that a 1992 U.S. Department of Education directive to enhance services for children diagnosed with “pervasive development disorder, not otherwise specified (PDD-NOS),” led to a flood of diagnosing  “socially awkward children” with Asperger’s Syndrome as a knee jerk reaction to achieving higher levels of funding and support for those children.

Since then the question has often been asked:

“ At what point should a child’s  eccentric, aloof or ‘oddball,’ behaviours be considered a developmental condition instead of a potentially passing phase?”

Questions like these have led to a high degree of social scepticism over the validity of an Asperger’s diagnosis, with many choosing to believe instead that Asperger’s is merely a diagnosis of convenience, used by parents to try and excuse their children’s bad behaviours.

Beliefs such as these have fed into a tendency to either under diagnose  or delay the diagnosis of children with Asperger’s Syndrome.

They have also further  added to the high degrees of intolerance and  lack of understanding that  parents of children with Asperger’s Syndrome, particularly girls, routinely describe experiencing in the  difficult and  stressful process of trying to seek help, support and acceptance for children on the Autism Spectrum.

There is no doubting that rates of under diagnosis have had a particularly strong impact on the lives of women and girls, whom it was once believed could not experience Asperger’s Syndrome..

More recently researchers have begun to contend that boys are no more dramatically susceptible to the syndrome than girls; rather it’s the fact that girls present or manifest the disorder in ways that are different to boys that have led to their high levels of under or misdiagnosis.

Though many females have remained undiagnosed for a variety of reasons, including the fact that girls are better at blending in, or that some AS traits are seen as being more socially acceptable in girls, there are females with Asperger’s Syndrome within our communities and more and more females are being diagnosed with Asperger’s Syndrome every day..

This improvement in the rates of girls now being diagnosed can be directly attributed to the many adults, particularly women, who are now speaking out about the debilitating impacts that growing up as a child with undiagnosed Asperger’s Syndrome has had on their lives.

If we listen to the experiences of those adults who are now speaking out, we should all be able to become more aware that the level of damage caused by refusing to legitimately recognize the symptoms of Asperger’s Syndrome in a child, regardless of their gender, can be catastrophic.

The stories of those who have lived through the pain of being undiagnosed should serve as a reminder to us of the importance and the need to engage in an accurate and unbiased  diagnostic process, untethered to either political or financial interests.


2 Myth: Asperger’s Syndrome only affects children: Therefore adults can and should grow out of it with time.

Many people have a tendency to think that Asperger’s Syndrome only affects children and that adults can and should be capable of growing out of it.

Such thinking has evolved in parallel with the idea that all children with ADHD can be medicated and will  eventually grow out of the condition.

Similarly, people also presume that adults with Asperger’s Syndrome, should somehow have been cured of it via early intervention therapies and other treatments by the time they reach adulthood.

Such ideas are both erroneous and extremely harmful to adults with Asperger’s Syndrome who struggle daily to attain some small degree of acceptance and understanding for their symptoms.

As it stands, there is no cure for Asperger’s Syndrome because it is neither a disease nor a disorder that people can turn on or off at will or that can be treated and made disappear by the use of medication.

One of the main reasons why the myth that Asperger’s Syndrome isn’t as common among adults as it is among children has persisted, may well be the fact that adults often have had a lifetime of  trial and error experiences to draw upon, which subsequently helps them to mask their symptoms for brief periods of time.

This skill unfortunately also enables people to believe that a person’s Asperger’s Syndrome is capable of going away. Which of course it isn’t.

Rather than allowing people to presume such nonsense I like to think of it this way:

Adults do not grow out of having Asperger’s Syndrome,  but rather, after living a life time of observing others and figuring out for themselves which environments and people are best suited to them, many adults with Asperger’s Syndrome grow into a deeper acceptance of themselves and therefore seek out life styles, where possible, that better suit their needs.

In this way I believe that adults grow into their Asperger’s Syndrome, not out of it.

So now that we’ve established that adults can and do legitimately have Asperger’s Syndrome it’s time to move on to some of the most common misconceptions about adult’s with AS.

 

3 Myth: Adults with Asperger’s Syndrome are attention seeking, cold, aloof, loners, who don’t care about the needs of others.

This is perhaps the most harmful myth of all. It has been said (and sometimes by fairly prominent people within the media) that Asperger’s Syndrome is just an excuse for some people to behave like sociopathic jerks.

This is not true. As with the formerly more well-known form of classic Autism, those with Asperger’s Syndrome do not choose to have this challenging condition.

They are not trying to be deliberately rude by avoiding eye contact, social interactions or loud, unfamiliar environments such as parties or large family gatherings simply as a way of gaining attention.

Part of the problem for those with Asperger syndrome is that personal relationships, including familial relationships, often require them to try and take part in hyper social activities that contain all of the many unwritten rules and social cues, those with Asperger’s Syndrome find so confusing.

As a result they will often avoid taking part in such activities.

Yet get a person with Asperger’s Syndrome in a one on one situation, without all of the distractions of a loud or unfamiliar environment, and you will often find that they are very warm, witty and generally caring people.

It really is as simple as that.

Yet despite this simple truth, those with Asperger’s Syndrome, whose outward appearances mark them out as being more focused on their own needs rather than on the social niceties of life, still often find themselves being ostracized and misunderstood by others.

Another very simple truth is that the vast majority of those with Asperger’s Syndrome desperately want to be liked and accepted by others. They just don’t know how to achieve this because unlike neruo-typicals, those with Asperger’s Syndrome were not born with the same intrinsic toolbox of social understandings and awareness’, that those born without Asperger’s Syndrome take for granted.

So although people with Asperger’s have routinely been viewed as being quiet, introspective people who are cold and aloof, the truth is that more often than not, they are simply people who are either too shy or too scared of being misunderstood, to say a word.

Another area of life that may make those with Asperger’s Syndrome appear aloof, or unable to put the needs of others first, involves the impacts that sensory issues may have on them.

For this reason, the need to maintain an environment that lessens the impacts of their sensory issues often creates within those with Asperger’s, an over-riding drive for safety that can become far more important to them than taking part in the social niceties of life.

But this does not mean that all Aspies are introverts, indeed some are also extroverts.

A good rule of thumb to remember is that if it looks like an Aspie is ignoring you, chances are they’re not, they’re merely observing your interactions and being cautious

And speaking of being cautious, here’s another myth that desperately needs busting.

4. Myth: Asperger’s is a dangerous mental illness that makes People more prone to Violence 

Due to modern media discourse and  the recent spate of sad and unfortunate instances of loner male teens committing acts of unthinkable violence, several erroneous links between such teens and those with Asperger’s Syndrome has once again raised speculations that Asperger’s may be a form of mental illnesses.

Such speculations however  represent both an immense lack of understanding in regards to mental illness in general and of Asperger’s syndrome itself.

Asperger’s syndrome is not a mental illness.

It is a neurological/developmental disorder.

Unlike classic or severe Autism, those with Asperger’s syndrome are often not diagnosed until school age when they’re lack of interaction with peers and the inability to automatically understand social cues begins to mark them out as being in some way different from their peers.

Although those with Asperger’s syndrome may also experience high levels of anxiety and a predisposition towards depression, it as yet unclear whether or not these conditions occur in tandem with Asperger’s Syndrome as a result of either sensory overload of the constant desire of society to force those with Asperger’s Syndrome to assimilate into social and environmental situations which they may find either uncomfortable or excruciating.

For instance, if you have an extreme sensitivity to sounds, being forced to sit amidst a classroom full of noisy peers would be enough to trigger  both extreme anxiety and discomfort.

If you don’t believe the debilitating effects this can have on an individual with Asperger’s Syndrome, then try going to a heavy metal rock concert with an ear infection and see whether or not you enjoy standing in front of the speakers.

Chances are, you will not.

However, unlike those with Asperger’s Syndrome, nobody is likely to accuse you of having a mental illness simply because you found being in a loud environment with painful ears unbearable.

The sheer logic alone of trying to associate the reactions of those with Asperger’s syndrome experiencing sensory overloads with the actions of those experiencing psychotic mental illnesses is once again extremely flawed.

So flawed in fact that it is now widely accepted by psychiatrists and psychologists alike that there are few, if any, alleged links between Asperger’s Syndrome and extreme acts of wilful violence to be found.

Hence those with Asperger’s Syndrome are no more prone to violence than the general population.

The only crime it appears those diagnosed with Asperger’s syndrome are guilty of is that of being somewhat eccentric by exhibiting behaviours that do not fall within the realms of what society considers ‘normal’.

Once again these are issues of socialization, not violence.

In conclusion, Asperger’s Syndrome, is considered a “developmental disorder” that a person is born with.

While no one knows exactly what causes Asperger’s Syndrome, what is becoming clear is the fact that the levels of misconception and suspicion that often surrounds adults with Asperger’s Syndrome, make it a tough and lonely disorder to live and deal with on a daily basis for many.

One key way in which we can begin to redress many of the myths and misconceptions that surround the experiences of adults with Asperger’s Syndrome would be to encourage those with the condition to discuss their struggles openly and honestly without all of the leering suspicions that have become so much a part of their daily lives.

“ I looked at the world and the world looked back at me for 50 years. Then I was diagnosed with Asperger’s Syndrome and suddenly everything changed”.

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“I looked at the world and the world looked at me for 50 years. Then I was diagnosed with Asperger’s. Getting the diagnosis had a profound effect. Over the following weeks, a thousand shards seemed to rush together to form a single mirror. I could see myself at last. There were no distortions, no ‘missing pieces’. So I could stop searching for them.

If you’ve ever beaten yourself up about your ‘failings’ you might begin to comprehend the sense of relief. After a lifetime seeking that elusive ease that other people seem born with, I suddenly realized that they were born with it, and I was not.

I’d often watch people in an attempt to work out how they’d go from being strangers to being close. I remember seeing two people sitting on a bus. He glanced at her, then reached up and pushed a strand of hair off her face. She looked at him and smiled. How does that happen I’d wonder.

I’m told that when younger, my inability to read signals left a small succession of men feeling rebuffed and vaguely puzzled. I’m flattered and bemused. I hope they were good-looking.

Some years ago I was in a relationship. He had to practically club me over the head and drag me into the cave before I realised he was interested. To anyone else, that might have been a warning. But people with autism tend to trust what we are told because we don’t speak body language. I spent our first year together discovering how manipulative he was and the next three looking for an exit strategy.

1098119_10151923638169903_2089384885_nThere is a vast gulf between being alone sometimes and being alone in the bubble of aloneness experienced by many people with autism. I go out every day, to be among people, but do not try to engage with them. I sit with my book or crossword, conscious that I am being part of society. If someone took a photo of me in the coffee bar, you wouldn’t spot the Aspie. And I might not be the only one.

Social isolation is not just about having mates to socialize with. It’s true that if I go to the cinema I go alone. I eat alone. I go on holiday alone and when I get home, everything is exactly how I left it. But it is more profound than that. If I am ill, no-one will bring soup or take me to the hospital. At the end of a working day, there is no-one to talk to about the stresses or the highs. If I am anxious, I stay anxious. I have no friends I can call to cheer me up. I know nobody with a car. If I want to buy something bulky, I have to pay to have it delivered. Join a club? Been there, done that, learned new skills, went home.

I know all the things I ought to do and how to access information. I don’t require kindly advice – I simply can’t do it because I work full-time and just getting through the day is too tiring.

I have a parent and an Aspie sister and we form a good support group. We have other siblings, without Asperger’s. They are happy with their families, however I wish they would make some attempt to understand autism. Not for myself, but because they have children and their children are beginning to have children.

I have read books by other Aspies and trawled the internet forums. There is a lot of emphasis on young people with autism. I was never a young person with autism, as I had no idea I had it. I was a young person with problems. I am now a middle-aged woman learning for the first time to recognize my problems as Aspie problems and look for interventions. I have the problems, but there don’t seem to be any interventions available to people of my age.

So I review my life alone. No change there. There are problems I haven’t been able to rectify, but I know how to be kind to myself. When I get home, electric lights go off and I light candles. I burn oils because they calm me. I am learning how to slow down the chatter that runs through my head and I am looking for the key to a full night of sleep.  I might never be at ease with you, but I am more at ease with myself.

I have plans that are based on who I am, rather than who I think I ought to be. I spent my first half century trying to fit in and now I have stopped. If anyone questions my oddness, I tell them it’s because I’m odd.”

This amazing story which so aptly reflects the maze of confusing emotions and experiences  that so many women, who are diagnosed later in life  with AS describe encountering along the rocky path toward self-awareness, understanding and acceptance , was written by “Manda” .

 

 

Autism from an adults perspective – “It’s a horrible feeling of vulnerability and helplessness to know that the non-autistic world sees you as seriously impaired”.

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Bitterness is a trap Aspies and Auties can easily fall into; it’s entirely understandable, but it doesn’t help the healing process. There is something that can be quite embittering for many of us on the autism spectrum, something appallingly undermining. For a start, there’s the stigma, the social taboo, the fact that to some people, you are now an embarrassment, and some of them show it.

On the inside, it’s a horrible feeling of vulnerability and helplessness to know that the non-autistic world sees you as seriously impaired, and there are a million and one ways it will try to make you feel as if you are not a fully functioning human being. At best, you know you’ll never be quite “normal”; and in a herd-mentality society that subsists on the fragility of social acceptance, this knowledge can a times indeed be a bitter pill to swallow.

This feeling of being vulnerable, confused and a bit lost, still happens to me every day, even  after more than forty years of dealing with it.

I was not diagnosed as having Asperger’s syndrome until adulthood, but well before that I did not produce appropriate emotional responses on meeting other humans, and that led to a disastrous cascade effect – I lost contact, became withdrawn, and fell off the cumulative ladder of social-emotional learning.

To this day, I have significant degree of impairment with social-emotional skills. I can’t be sure I am reading people’s signals accurately. Indeed, often I know I haven’t, even before they become guarded and then pissed off – I’m not at all sure I fully understand what they are saying, especially if they are “being polite” or trying to imply something rather than saying it straight out. I need direct, literal communication: and on this cagey, dodgy planet I seldom get it, which means that much of the time I can’t be sure that I did in fact “get it”.

I often have to ask for clarification, which can lead people to think that I am a “please explain” duh-brain; it also leads to conflict because they think I’m just being awkward in not accepting what they think they have said, or not coming back with what they deem the appropriate emotional response.

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At such times, my underlying high IQ is not obvious to the casual observer. This can all add up to a very embittering feeling of insecurity – the feeling that I am condemned to a position of permanent and humiliating disadvantage, of seeming to be a bit of an idiot.

Bitterness can set in when living with autism or Asperger’s syndrome. But is it possible to leave the bitterness behind, to work through it to a sunnier place? I hope so. I’m still working on mine: here are some ideas I’ve found helpful.

The first point is one that actually elongates the process rather than shortening it. I have often been told that I need to forgive, to let go, to move on. That is true: but it is utterly pointless trying to do that unless we have first fully, honestly and laboriously worked through all the negative feelings, all the grief we have about not fitting into this world. It is vital and indispensable that anyone who is on the autism spectrum has the absolute right to go through our own grieving process in our own time, and let go of it all only when we are REALLY ready to do so.

Forgiveness is not an instantaneous action, a simple stroke of volition. It is a difficult emotional process, and it simply doesn’t work if we try to jump stages. It is easy to say we must forgive, let it go. Yet we cannot forgive until we have let the anger up to the surface and expressed it. And don’t ask whether or not your feelings are reasonable – feelings are never reasonable. They are not meant to be reasonable: feelings are feelings, not rational ideas. Don’t get the two confused, they are very different phenomena.

Thus, to get to the stage of being able to let go of our resentments, we must work through all the powerful stages of grieving – the denial, the depression and hopelessness, the slowly mobilizing anger, the growing reconciliation to our new, impaired daily reality, the radical reassessment of our goals, life experiences and interpretations. It takes time, often a lot of time – and we need to allow ourselves to do it in our own impaired time, not on a schedule suggested by well-meaning (or otherwise) helpers.

At all times, I try to keep one guiding principle in mind and that is that the fact that I am an Aspie does not make me less of a human being.

Nor does it detract from my indelible human rights – including above all the right to make a positive contribution to the betterment of the human condition in whatever ways I can.

I may be different but I’m still a human being and just like every other human being I will have my good days and my bad days and my own unique ways of processing past hurts.