All of you who are over forty and living in housing commission homes whilst working and earning a decent enough income to have new cars, boats, motorbikes, holidays abroad or whatever else your little heart’s desire, it’s time to get your snouts out of the public trough and give young families the same fair go you got when you were first starting out.
If you all did the right thing, there simply wouldn’t be a public housing crisis.
So come on older Australian’s.
Public housing was never meant to be seen as being a valid life style choice.
Public housing was never meant to be seen as being a life style choice.
Yet unfortunately for far too many, that’s exactly what it’s become.
Many politicians and welfare groups consistently claim that Australian’s in need are experiencing a public housing crisis.
To further bolster this claim, every year at Christmas time there are ads on TV from welfare groups showing families living in cars complete with the said children of these car dwellers asking their parents the question “will Santa be able to find us this year”, as they sit in the middle of a car park.
At first these ads made me cry.
This is, of course, exactly what they’re designed to do.
Then I moved into a suburb that’s mostly filled with public housing or housing commission homes as we call them in Australia.
The neighbors to the right of me are a couple who have been…
People often ask me: “What will I gain from being diagnosed later in life? It won’t change anything for me, so why should I bother?”
Well, my answer as to whether or not anyone should “bother” to get diagnosed is this.
Firstly, on a purely personal level, it depends entirely on what your personal circumstances are and what the biggest issues are that you’re facing at any given point in time.
If you’re a person who’s main problem is that you’re always feeling misunderstood or blamed by your family member for being the way that you are, then perhaps receiving a formal diagnosis may help your family members to comprehend and accept that some of the onus for understanding both who and how you are, falls upon them to make more of an effort to accept you as you are, rather than allowing them to continue to always view you as being the one who needs to change.
Secondly, if you find that you may be in need of some form of formal support or assistance, then receiving a diagnosis may help you to better be able to access whatever support systems are in place within your area.
A diagnosis should also, at the very least, help others around you to become aware that you are genuinely more in need of care, understanding and support than they had previously thought.
Thirdly, if you want to increase your own levels self-understanding and awareness or further seek to validate your own understandings of yourself as being both true and accurate, then receiving a diagnosis may also provide these assurances for you.
But, if you are a strong-willed person who is confident enough to be able to self-identify with having Asperger’s, without feeling any twinges of doubt about it what so ever, then you’ll most likely feel that either the seeking out, or the receiving a diagnosis, is not for you as it holds little potential to offer you any great benefits.
And that’s okay.
But for me, I have found that those who benefit the most from older women such as myself coming forward and being diagnosed, are the generations of girls who are yet to come and the generation of girls and women who are still today, young enough to incorporate this deeper understanding of themselves as females who are Autistic, into their daily lives and move on.
At my age, receiving a formal diagnosis offers me purely the ability to understand myself better and enables me to finally ask for the things I’ve known for so long that I’ve needed all of my life, things such as solitude, peace and quiet, but have never been made to feel as if it were okay for me to ask for these things, because I am a woman and women are supposed to love company and to always want to be social creatures.
I had no way of explaining to anyone, let alone myself, why I’ve always felt that I needed so much time alone.
Yet for girls of my daughter’s age, receiving a diagnosis is offering them so much more.
It is offering them the opportunity of being able to grow up with the gift of truly knowing not only who they are, but also understanding how they are, and that they’re okay.
That it’s okay to be different.
And this to me, as both a woman and a mother, is the gift of understanding that I truly believe is worth fighting for.
I am so glad that there were women in the past who had the strength, courage and forethought, to lead the way forward and to lay the foundations that so many of us today are now standing on, by arguing, on our behalf’s, that High Functioning Female Autism is a very real phenomenon.
Believe me when I tell you that I am all too aware that if no woman had ever dared challenge the male based status quo of the understandings of Asperger’s Syndrome of the past, that neither my daughter nor I, would now be diagnosed.
So how exactly does receiving a diagnosis later in life help anyone and what does it solve anyway even if you do get one?
Well, for one thing, it is likely to allow many women to make sense of their pasts.
To knit all of the previously unresolved elements of their lives, their personalities, their characteristics and their traits, into some semblance of a perspective that will finally make sense to them.
So if that one singular perspective that makes sense of your life is the one thing that you’ve been missing, then getting a diagnosis, even at a much later stage in life, can still provide you with a huge feeling of relief.
In terms of gaining greater access to benefits and assistance, if you are already financially secure or successfully working, then no, receiving a diagnosis later in life, may not help you in any way in terms of on the job support training and alike.
But what it will do, is benefit your children, and your children’s children.
And if you’re not a mother yourself, then please understand that your actions and your choices, may end up benefiting your sister’s or your brother’s children.
The knowledge and validity that we as women gain from receiving a formal diagnosis, could well prevent future generations of girls from having to put up with the kinds of constant bullying that are caused by male bias ignorance.
This will enable them to grow up holding all of the answers to all of the questions that we once, as children held locked inside of our own heads, like fragile eggs, and were too afraid to ask why it was that we were so different from everybody else.
If being diagnosed later in life can help to take away from another child, that awful sense of confusion and self-loathing that comes from knowing that they don’t belong, without ever fully knowing or understanding why, then I’m all for it.
So whilst a formal diagnosis may not seem to be such an important deal individually, in the grand scheme of things, I can see how each and every woman and girl, diagnosed today, can help create a stronger, better defined and more brightly lit path, for our Autistic girls of the future to walk upon.
Unlike us, they won’t have to spend over half of their lifetimes stumbling around in the deep and uncertain dark, and that’s a good thing.
I’m not sure whether holding ideas like these makes me a dreamer, or simply yet another deluded fool.
Either way, the more women and girls who are diagnosed today, the harder it will be for the powers that be, to dismiss the needs of Autistic Women in the future.
I understand that this way of looking at things is not everybody’s cup of tea, but it certainly is mine. So comment and let me know whether or not you agree.
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.
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.
Something I’ve often noticed about the way Asperger’s Syndrome impacts on my life is the disparity that it creates between my inability to speak or talk smoothly and freely to people in real life, compared with my ability to express myself clearly in writing.
Believe it or not I regularly forget the words I want to use when I’m talking to people face to face.
They simply seem to just escape me.
Like birds that have flown their coop and no amount of trying can retrieve them.
In moments like these I find myself gasping for breath and completely lost, as my inner panic at not being able to find the right words, envelopes me.
More often than not I end up stuttering or just stopping, awkwardly, half way through a sentence.
Trapped in a suspended silence, gazing solemnly at the floor, while my mind continues grasping for that which can no longer be found.
I’m sure at such times I must come across as being an absolutely dim-witted ‘weirdo’.
I guess this is also the reason why most people are surprised to discover that I have two degree’s.
I bet they wonder exactly which cereal box I found my degree’s in.
It’s also why my family insist that I “could be doing so much more with my life….if only I wanted to”.
Hmmm…. Yes…. Right…. Because of course I want to be completely tongue-tied and empty-headed whenever I’m speaking to another person.
I can never seem to make my family understand that I don’t want my words to escape me when I need them most.
Or that the loss of verbal ability I experience when trying to talk to someone, isn’t ‘just a matter of choice’ or ‘obstinacy’.
It’s a genuinely, real, experience.
Yet give me a keyboard and I’m perfectly fine.
I can write for hours and when I do, words just seem to flow out of me.
There’s no grasping or grappling furiously for a language that is no longer there.
There’s no effort, no strain, no awkward silences.
There is only the freedom of expression.
The freedom of being me.
Does anyone else experience this level of disparity between the things you can do in one medium, yet not in another?
The idea of turning ‘care’ into a commodity that can be bought and sold instead of acknowledged as a virtue of the human spirit that can be given willingly, is not a new one.
We’ve long paid doctors, nurses, psychologists, social workers, support workers and a whole host of others who belong to the so-called ‘Caring Professions’ for years.
But what’s changed in the last few decades are the amount of people now being employed in what has come to be known as the ‘Care Industry’.
And by this I mean workers who are not required to undergo years and years of study on how to ‘care’ for others, but instead workers who are simply doing a job with the label ‘Care’ stacked in front of it.
Such as those you’d find working in homes for the elderly or providing in home ‘care’ or assistance for those who are frail, ill or disabled within their own homes.
Once upon a time these workers may simply have been called ‘Domestic Help’, ‘Home Helpers’, ‘In Home Support Workers’ or Aides.
Today these same workers are called ‘Carers’.
Yet the thing is, despite the title they’ve been given, these workers are not carers because in reality, they do not truly care either for or about the people they are assisting once their allotted work period is over.
In other words, they are just like any other worker within a capitalist society in which every action that can possibly be bought and sold as labor is bought and sold, no matter the job description placed in front of it.
So once they are off the clock, just like any other worker, their job is done.
This means, in this case, that their allotted time for ‘caring’ is also done.
So employed ‘Carers’, in this sense, can be seen as merely workers who are performing a job and being paid for their time. Just like everyone else in the working world.
But people tend to forget this fact as soon as the term ‘carer’ is included within the job title.
Employed ‘Carers’ are often treated by others as if they are some kind of Florence Nightingale and the reason for this is quite simply to be found in the use of the term ‘carer’.
The word ‘Carer’ conjures up images of nurturing and self-sacrifice for the benefit of others.
Its use implies therefore that these workers not only do the practical things that are required but that they also actually care about the people they are working for in a way that means they are putting themselves out and going above and beyond the call of duty to help others.
Yet the truth is, if they weren’t being paid, they wouldn’t attend their work.
In other words, if they weren’t being paid to ‘care’ (i.e. do their jobs), then they wouldn’t ‘care’ (do their jobs).
So, in this instance the word ‘care’ is being used as euphemism for paid work assisting others.
Now where is the genuine care in that?
In fact where is the ‘care’ to be found within any of the so-called ‘care industries’?
Where’s the honest and genuine dedication toward making another’s life better or easier gone too?
These days, if you can’t pay for ‘care’, then you don’t get any ‘care’.
Unless of course that ‘care’ is being provided free of charge by a loving family member who genuinely wants the best for the relative they are caring for.
To my mind families are the real ‘carers’.
They don’t get paid and they never clock off.
They are the ones who share smiles and shed tears with their loved ones.
They live each and every trial of their loved ones life right alongside them.
They are never off call.
And yet, family members who willingly and lovingly assume the role of carers are routinely treated as if the time and energy they spend in ‘caring’ for a loved one is, in capitalist terms, worthless, for it has no immediate monetary value attached to it.
Familial carers do not get paid, not in the way that ‘employed carers’ do. If they are lucky they may receive some small stipend from the government, which is more often than not viewed by others as an unearned welfare payment, and yet these familial carers are the only ones who are ‘carers’ in the true sense of the word.
These true Carers find themselves caught up within a capitalistic system that devalues any work performed without monetary payment, whilst at the same time sets about promoting and deriving profits from the pseudo ‘care industry’ they’ve created.
One that has nothing what so ever to do with actually, genuinely caring for the wellbeing of others, and everything to do with caring only about their profit margins bottom line.
This isn’t ‘care’, it’s a capitalist industry that’s been artfully created by misappropriating a once genuine concept and turning it into yet another commodity to be bought and sold.
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.
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 ❤
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:
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 overwhelming majority of referrals for a diagnostic assessment for Asperger’s Syndrome are boys. The ratio of males to females is around 10:1, yet the epidemiological research for Autistic Spectrum Disorders suggests that the ratio should be 4:1. Why are girls less likely to be identified as having the characteristics indicative of Asperger’s Syndrome? The following are some tentative suggestions that have yet to be validated by academic research, but they provide some plausible explanations based on preliminary clinical experience.
It appears that many girls with Asperger’s Syndrome have the same profile of abilities as boys but a subtler or less severe expression of the characteristics. Parents may be reluctant to seek a diagnostic assessment if the child appears to be coping reasonably well and clinicians may be hesitant to commit themselves to a diagnosis unless the signs are conspicuously different to the normal range of behaviour and abilities.
We have a stereotype of typical female and male behaviour. Girls are more able to verbalise their emotions and less likely to use physically aggressive acts in response to negative emotions such as confusion, frustration and anger. We do not know whether this is a cultural or constitutional characteristic but we recognise that children who are aggressive are more likely to be referred for a diagnostic assessment to determine whether the behaviour is due to a specific developmental disorder and for advice on behaviour management. Hence boys with Asperger’s Syndrome are more often referred to a psychologists or psychiatrist because their aggression has become a concern for their parents or schoolteacher. A consequence of this referral bias is that not only are more boys referred, clinicians and academics can have a false impression of the incidence of aggression in this population.
One must always consider the personality of the person with Asperger’s Syndrome and how they cope with the difficulties they experience in social reasoning, empathy and cognition. Some individuals are overtly active participants in social situations. Their unusual profile of abilities in social situations is quite obvious. However, some are reluctant to socialize with others and their personality can be described as passive. They can become quite adept at camouflaging their difficulties and clinical experience suggests that the passive personality is more common in girls.
Each person with Asperger’s Syndrome develops their own techniques and strategies to learn how to acquire specific skills and develop coping mechanisms. One technique is to have practical guidance and moral support from one’s peers. We know that children with Asperger’s Syndrome elicit from others, either strong maternal or ‘predatory’ behaviour. If the person’s natural peer group is girls, they are more likely to be supported and included by a greater majority of their peers. Thus girls with Asperger’s Syndrome are often ‘mothered’ by other girls. They may prompt the child when they are unsure what to do or say in social situations and comfort them when they are distressed. In contrast, boys are notorious for their intolerance of children who are different and are more prone to be ‘predatory’. This can have an unfortunate effect on the behaviour of a boy with Asperger’s Syndrome and many complain of being teased, ignored and bullied by other boys. It is interesting to note that some boys with Asperger’s Syndrome actually prefer to play with girls who are often kinder and more tolerant than their male peers.
The author has conducted both individual and group social skills training with boys and girls with Asperger’s Syndrome. Experience has indicated that, in general, the girls are more motivated to learn and quicker to understand key concepts in comparison to boys with Asperger’s Syndrome of equivalent intellectual ability. Thus, they may have a better long-term prognosis in terms of becoming more fluent in their social skills. This may explain why women with Asperger’s Syndrome are often less conspicuous than men with the syndrome and less likely to be referred for a diagnostic assessment. The author has also noted that, in general, mothers with Asperger’s Syndrome appear to have more ‘maternal’ and empathic abilities with their own children than men with Asperger’s Syndrome, who can have great difficulty understanding and relating to their children.
Some individuals with Asperger’s Syndrome can be quite ingenious in using imitation and modelling to camouflage their difficulties in social situations. One strategy that has been used by many girls and some boys is to observe people who are socially skilled and to copy their mannerisms, voice and persona. This is a form of social echolalia or mirroring where the person acquires a superficial social competence by acting the part of another person. This is illustrated in Liane Holliday-Willeys intriguing new autobiography, titled, “Pretending to be Normal’.
“I could take part in the world as an observer. I was an avid observer. I was enthralled with the nuances of people’s actions. In fact, I often found it desirable to become the other person. Not that I consciously set out to do that, rather it came as something I simply did. As if I had no choice in the matter. My mother tells me I was very good at capturing the essence and persona of people. At times I literally copied someone’s looks and their actions. I was uncanny in my ability to copy accents, vocal inflections, facial expressions, hand movements, gaits and tiny gestures. It was as if I became the person I was emulating. (p.22)”
Girls are more likely to be enrolled in speech and drama lessons and this provides an ideal and socially acceptable opportunity for coaching in body language. Many people with Asperger’s Syndrome have a prodigious memory and this can include reciting the dialogue for all characters in a play and memorizing the dialogue or ‘script’ of real life conversations. Knowing the script also means the child does not have to worry about what to say. Acting can subsequently become a successful career option although there can be some confusion when adults with Asperger’s Syndrome act another persona in real life as this can be misconstrued as Multiple Personality Disorder rather than a constructive means of coping with Asperger’s Syndrome.
When a child would like more friends but clearly has little success in this area, one option is to create imaginary friends. This often occurs with young girls who visualise friends in their solitary play or use dolls as a substitute for real people. Girls with Asperger’s Syndrome can create imaginary friends and elaborate doll play which superficially resembles the play of other girls but there can be several qualitative differences. They often lack reciprocity in their natural social play and can be too controlling when playing with their peers. This is illustrated in Liane Holliday-Willey’s autobiography.
“The fun came from setting up and arranging things. Maybe this desire to organise things rather than play with things, is the reason I never had a great interest in my peers. They always wanted to use the things I had so carefully arranged. They would want to rearrange and redo. They did not let me control the environment.”
When involved in solitary play with dolls, the girl with Asperger’s Syndrome has total control and can script and direct the play without interference and having to accept outcomes suggested by others. The script and actions can be an almost perfect reproduction of a real event or scene from a book or film. While the special interest in collecting and playing with dolls can be assumed to be an age appropriate activity and not indicative of psychopathology, the dominance and intensity of the interest is unusual. Playing with and talking to imaginary friends and dolls can also continue into the teenage years when the person would have been expected to mature beyond such play. This quality can be misinterpreted as evidence of hallucinations and delusions and a diagnostic assessment for schizophrenia rather than Asperger’s Syndrome.
The most popular special interests of boys with Asperger’s Syndrome are types of transport, specialist areas of science and electronics, particularly computers. It has now become a more common reaction of clinicians to consider whether a boy with an encyclopaedic knowledge in these areas has Asperger’s Syndrome. Girls with Asperger’s Syndrome can be interested in the same topics but clinical experience suggests their special interest can be animals and classic literature. These interests are not typically associated with boys with Asperger’s Syndrome. The interest in animals can be focussed on horses or native animals and this characteristic dismissed as simply typical of young girls. However, the intensity and qualitative aspects of the interest are unusual. Teenage girls with Asperger’s Syndrome can also develop a fascination with classic literature such as the plays of Shakespeare and poetry. Both have an intrinsic rhythm that they find entrancing and some develop their writing skills and fascination with words to become a successful author, poet or academic in English literature. Some adults with Asperger’s Syndrome are now examining the works of famous authors for indications of the unusual perception and reasoning associated with Asperger’s Syndrome. One example is the short story, “Cold” in ‘Elementals: Stories of Fire and Ice’ by A.S. Byatt.
Finally, the author has noted that some ladies with Asperger’s Syndrome can be unusual in their tone of voice. Their tone resembles a much younger person, having an almost child like quality. Many are concerned about the physiological changes during puberty and prefer to maintain the characteristics of childhood. As with boys with Asperger’s Syndrome, they may see no value in being fashionable, preferring practical clothing and not using cosmetics or deodorants. This latter characteristic can be quite conspicuous.
These tentative explanations for the apparent under representation of girls with Asperger’s Syndrome have yet to be examined by objective research studies. It is clear that we need more epidemiological studies to establish the true incidence in girls and for research on the clinical signs, cognitive abilities and adaptive behaviour to include an examination of any quantitative and qualitative differences between male and female subjects. In the meantime, girls with Asperger’s Syndrome are likely to continue to be overlooked and not to receive the degree of understanding and resources they need.
Originally sourced from cloudnine.wordpress.com
Reference: Holliday-Willey, L. (1999) Pretending to be Normal: Living with Asperger’s Syndrome. London. Jessica Kingsley Publications.
I spent years desperately seeking help for my daughter’s increasingly out of control behavior and, up until recently, found little to no help at all.
One of the biggest problems I’d faced in my efforts to garner any form of professional assistance for her is the genuine lack of belief that a child of her age could act out so violently or manipulatively without cause.
Now when I say ‘without cause’, what I actually mean is that all (bar one health care professional), sought to turn the ‘blame’ for my daughters behavior back on to me as a parent.
Clearly I must have been doing something wrong, like not standing up to her firmly enough, not providing enough discipline or maybe as a parent even failing to impart to her the correct and expected standards of behavior.
Perhaps, if my daughter’s behavior is at times manipulative, abusive and aggressive, then it must be because I, as her mother am also manipulative, abusive and aggressive?
Or so the story goes.
Well, just for the record, I’m neither abusive or aggressive and probably couldn’t manipulate my way out of a paper bag if my life depended on it.
I’m the kind of person who’d much rather run from a fight than jump up and start one.
As a matter of fact, I’m an extremely quiet person and I love peace and harmony.
I’m also big on following rules, have a strong sense of social justice and adore having a daily routine in place.
For me, having a routine, affords me great peace of mind and comfort.
However with my daughter there is no such sense of routine possible.
She does not always enjoy the same thing today as she found comfort in yesterday.
She flies in a rage whenever she is asked to do anything, even if it’s something as simple as putting her clothes away.
Whenever this happens all bets are off and she can and will do anything to both express her anger and to avoid doing whatever it is that she has been asked to do.
Now I know that she has Asperger’s Syndrome, but so do I, and we are not the same when it comes to engaging in the basics of life.
Despite this, many involved in the assessment of Asperger’s insist that her ‘meltdowns’ are occurring as the result of her increasing inability to cope with a world that she’s struggling to comprehend.
From my point of view such explanations form a yes but…. no response.
I undoubtedly agree that she has AS, and that she finds the world overwhelming but I had already adapted many of the routines in our life to compensate for that,…. but,….. and here’s the big but,…… she can cope very well with social situations and she can, when she wants too, be very agreeable, happy and easy to get along with.
What she can’t seem to do, or is unwilling to do, is understand and accept that other family members have rights and needs that need to be addressed too.
Especially if those rights and needs conflict with anything that she wants to do.
So I’ve been left asking myself just what is going on here?
Yes she has AS but is she now so spoiled rotten because I’ve instinctively sought to compensate for that, that she’s suddenly forgotten how to appropriately behave whenever it suits her?
Have I been such a bad parent that by pandering to her needs, I’ve inadvertently created in her the expectation that she should always get her own way?
And does she even know any longer what her own way is because nothing and I mean nothing, calms her down once she’s exploded.
Her behavior has reached the point where the slightest things set her off and there’s absolutely no rhyme or reason to it at all.
Therefore, I can not stop her rages from occurring.
Nor can I bring her out of them.
Nothing it seems can bring her out of her rage until she herself is ready to come out of it.
Any attempts to help her calm down once she’s in a rage are rejected and usually result in an escalation of her bad behavior.
I have quite literally being pulling my hair out trying to understand why she blows up at the drop of a hat and why once she’s up in the air, nothing can bring her back down.
Not even letting her have her own way with whatever it was that set her off in the first place will work.
So it’s not simply a matter of “I’ll misbehave until I get what I want” because she no longer even seems to want whatever it was that set her off in the first place.
There is simply no logic to it all and I doubt very firmly that she is either in control of, nor understands, why she’s doing what she’s doing.
I must even admit that there have been times when her behavior has both scared and confused me.
Scared me, because when she goes off she becomes incredibly violent.
Confused me, because if it were just a matter of her wanting to always get her own way, then why won’t giving her what she wants calm her down?
“Children with PDA essentially have an in-built need to be in control and to avoid other people’s demands and expectations, which raises their anxiety levels to an extreme extent…. They all shared an unusual resistance to everyday demands – even when related to things that they would enjoy. The children were superficially sociable but were often manipulative and lacked awareness of unwritten social rules. Their moods could switch very suddenly and they often confused reality and fantasy.”
After reading this my jaw dropped, for this is exactly what I’d been seeing in my daughter’s odd set of behaviors.
One minute she’s my lovely girl, and she’s calm and rational, the next minute she’s blowing up at me over the loss of a hair tie (of which we have a jar full, all the same size and all the same color).
“These children are said to resist the ordinary demands of life to a pathological degree using an abundance of tactics. They often have a Jekyll and Hyde type of personality with severe mood swings and can often exhibit severe behavioural difficulties. They may have a troubled educational history and the family may be in severe need of help and support.”
And the pennies began to drop, and drop and drop.
The blog post I’d been reading then went on to say:
“In contrast to most individuals with autism spectrum disorders, individuals with PDA appear to have an anxiety-led need to control, possessing superficial social skills…. They often engage in manipulative, domineering behaviour.”
Can you hear the sound of still more pennies dropping because for the first time, in a very long time, I finally could.
“PDA is related to the autistic spectrum disorders (ASD), but varies significantly from most other syndromes on the spectrum. Unlike other ASD children those with PDA appear to understand emotions and communication…to the point of being manipulative.”
“These children do not recognize that they are children. And while they may fully understand the societal rules of behavior, they have difficulty applying those standards to themselves. Their deep need to control situations and their environment is born out of the intense anxiety that they experience when demands are placed upon them…even normal every day demands of life and school.”
Got it in one.
Still more pennies were dropping and then I read this, written by a mother about her young daughter:
“She was totally dictating our lives – what I wore, if I could make a phone call, who could come round.”
For me this was the clincher, the thing that’s making me believe that PDA could be the answer, because these are the behaviors that my daughter regularly attempts to apply to me.
She’s even gone as far as taking away my phone and my hiding my car keys so that I can’t leave the house or call for help.
I know that to most people it sounds absurd that a child can create so much turmoil, especially a girl, especially a girl under the age of 13, but I’m telling you they can and I know now that I’m not the only parent experiencing this.
There is a term for it.
It’s called Pathological Demand Avoidance.
And it’s real and I am not alone in being subjected to it.
So thank you to each and every blogger out there whose posted on this topic and a special thank you in recognition and gratitude to those amazing bloggers whose words I’ve quoted.
You have all given me a much-needed source of information, hope and inspiration.
I can only hope that in turn, by passing on your information, that this post may one day do the same for someone else.