Asperger Syndrome and the need for Social Justice – Could Autism be benefiting our society?

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A feature of Asperger’s syndrome that can be advantageous to society is a concern with social justice and discrimination against minority groups.

This can sometimes be strikingly developed in Asperger’s cases, often because of their characteristic impatience with conventional hypocrisy and publicly accepted double standards (not to mention the fact that they sometimes feel the victims of discrimination themselves).

Modern societies have canonized such concerns in law and public attitudes, and a number of famous campaigners for equal rights and social justice have been posthumously proposed as Asperger’s cases.

Autistics tend to be loners, who are poor at participating in group activities of the kind that exploit social justice and anti-discrimination sentiment for self-serving political and social advantage.

Modern authorities on autism have described autistics as “truth-tellers” and, thanks to their bottom-up, devil-in-the-detail style of cognition, are often the first to see that the emperor has no clothes or that the great idol has feet of clay.

Furthermore, they are also likely to be the ones to blurt out the truth, and draw attention to the inconvenient fact, irrespective of what others may think.

I do believe that autistic antagonism to lies and deception of all kinds is not only the most redeeming feature of the so-called disorder, but one which autism shares increasingly with modern societies—and very much to their benefit.” Original Article by Christopher Badcock http://www.psychologytoday.com/blog/the-imprinted-brain/201006/the-big-plus-the-outsider-society-truth-challenges-lies

I have often wondered whether or not the world would be a much better, fairer place, if it were being run by people who felt a burning need for social justice… aka…Aspies.

The above abstract is from a much larger article by Christopher Badcock which makes some strikingly good points regarding the ways in which the strengths of those with Asperger’s could be put to good use within our societies.

So what do you think?

Have your say on whether or not you think the world be a better, fairer place if it were being run by Aspies in the comment section below.

Asperger Syndrome – Grappling and Grasping

Artwork by Linzi Lynn

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?

People with Autism want real friends too.

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This is true however; friendships can turn out to be incredibly one-sided and eternally complex for girls with Asperger’s Syndrome.

Often girls with Asperger’s Syndrome feel as if they have to hide who they really are in order to fit in and be accepted by their peers.

As a consequence of this, they often find themselves enduring conversations and situations that they really, don’t want to be in.

This is how my daughter describes the sense of complexity that friendships create for her.

“I like being with my friends ….

Sometimes….

But sometimes being with my friends just means that….

I have to do my hair,

And put on clothes that aren’t all that comfortable….

Just to listen to them talk about boring things…..

Or do things that I don’t really want to do…..

In places I don’t want to be….

Just to fit in….

Sometimes…..

I’d really like it if my friends could just come to my house,

Where I can wear my comfy clothes,

And do the things with me,

That I want to do,

I wish they’d just simply try,

Letting me be who I am,

How I am…..

Without judging me for being different……

So yeah, sometimes….

I like being with my friends…..

But I guess sometimes….

I just get so tired of always having to try,

Not being me,

Just to fit in.

I wish that they could see how boring fitting in,

Is to me.

Someday ….

I hope I have friends that want to fit in with me,

Instead of it always being the other way round.

That’d be really nice.”

 

 

Women with Asperger’s – Are We Victims of our own success?

Art by Jason Limon

Art by Jason Limon

How is it that we can be so gifted,

Yet  so challenged at the same time?

We see the details others don’t,

Yet can’t seem to find the right words

Or ever be sure of what to say,

Sometimes, because of this,

Life becomes nothing but a struggle.

Whether it’s a struggle to physically speak,

Or a struggle to interact,

It takes painstaking work for many of us,

To get even halfway close,

To appearing “normal.”

Sometimes when this struggle drains us,

Others judge us for being  weak.

They tell us to just “toughen up”,

“To get over it”,

And everything will be Okay.

It’s  as if the better we do,

The more people forget,

Or don’t register,

Our challenges.

How ironic it is,

That we should become the victims,

Of our own success.

WASP Women’s Asperger’s Syndrome Awareness Page – For those who understand

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For many women, the process of beginning to  suspect that their feelings, thoughts and ways of experiencing the world are somehow  different to that of  those  around them, can be a painful one.

Many women, especially those who discover later in life that they are on the Autism Spectrum, have often lived lives  filled with a quiet sense of desperation and confusion over their repeatedly unsuccessful attempts at living up to the ‘kind of life’ that societal expectations demand of them.

On the surface they may appear  to be shy, odd, home body types.

Or alternatively, come across as individuals who are rude, blunt, cold and determinedly goal oriented women.

When in reality they are often women who  have found that they do not easily make small talk with others  or possess a desire to gossip, read fashion magazines or obsess about their hair, make up, finger nails, shoes or any of the other supposedly ‘natural female interests’, that seem to come so easily to others.

As a result they may be women who have given up on pretending to be enamored by the social niceties of life, but, that does not mean that they themselves are not warm, caring, empathetic and highly intelligent women.

They are.

In many instances women on the Autism Spectrum are both highly creative and sensitive poets, writers and artists.

Yet because of their inability to ‘fit in’ socially,  they have also more often than not, endured years of being placed in the ‘too hard’ basket by health professionals, family and friends alike  simply because others have been unable to take their experiences seriously.

Many, especially those who are older, have experienced the utter lows of being misdiagnosed with damaging mental health conditions and have suffered the agony of being given up on as lost causes and  thrown on to the scrap heap of  humanity for doing what others perceive as ‘failing to willingly change their peculiar ways’.

Sadly, the practice of misdiagnosing young women and teenage girls on the Autism Spectrum with unnecessary and erroneous mental health conditions, is one that is still occurring today.

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As a consequence, many women who suspect that they may be on the high functioning end of the Autism Spectrum, the end formerly known as Asperger’s Syndrome, choose not to seek out a formal diagnosis.

Instead they seek to walk a path that allows them to discover their own degrees of awareness, understanding and self acceptance without feeling the need to have the inner truth of who they are and what they experience, validated by a diagnostic criteria that has already served so many women and young girls on the Autism Spectrum so incredibly poorly.

WASP Women’s Asperger’s Syndrome Awareness Page is a place for both those who are starting out on their journeys of self discovery and those who, after many years,  still find themselves walking along it.

It is a place where those of us who understand what it’s like to be at just about every point along the trail, can share, discuss, laugh and commiserate with each other over the many joys and misery’s that AS brings to our doors.

It is a place where no explanation is needed because we already understand.

You can find WASP Women’s Asperger’s Syndrome Awareness Page at http://www.facebook.com/waspwantsyou

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 ALREADY AM A HUMAN BEING – Written BY Judy Endow

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“I do not know if you have ever thought of it this way, but it is a step up that today autistics have the opportunity extended to prove themselves human.

As bad as that is and wrong in ever so many ways it is a step up from 50 years ago when I was a kid and we were not even given any chances to try to convince anybody of our worthiness as a human being much less our intelligence. It is all so wrong and such a slow-moving shift it is sometimes difficult to remain positive.

This past week I read two news articles on the same day that made me wonder if anything at all is changing in the attitudes of the general public in terms of knowing and accepting autistics for the human beings we are – YES, AUTISTICS ARE HUMAN BEINGS. Even when we do things differently based on our different neurology WE ARE FULL-FLEDGED HUMAN BEINGS. We do NOT need to first be made to act neurotypical before you grant us the status of HUMAN BEING because WE ALREADY ARE HUMAN BEINGS. I get so weary of reading sentences embedded in autism related news articles that seem to be based on an assumption that we are not truly human, but perhaps can be made into a human being by being forced to behave like a neurotypical person. Here are a few examples:

EXAMPLE 1: This study “examined the relationship between loneliness, friendships and well-being in 108 adults with autism aged 18 to 62 years. The study found that people with autism who have a group of good friends are less likely to feel lonely, depressed and anxious than those without many close friends.”
From: http://sfari.org/news-and-opinion/blog/2013/adult-focus

MY COMMENT: If the presumption is that autistic people are human beings why do we need a study to show that autistic people, just like human beings, feel less lonely, depressed and anxious when they have friends?

EXAMPLE 2: “A diagnosis of autism does not eradicate the essential desire in people to need intimacy. The desire is present, even if the means to achieve the desire – such as confident eye contact, an appropriate smile, looking and not staring – requires intervention by sources that understand autism. The main problem reported for the current lack of tools to help autistic people romantically is funds.”
From: http://www.autismdailynewscast.com/romance-and-autism-dating-is-more-than-possible-for-people-with-asd/3880/ashleyisaacson/

MY COMMENT: Autistics have human desires because WE ARE HUMAN BEINGS. The means to achieve intimacy (or to achieve anything at all connected with our own quality of life enhancement) does not depend on funds to create programs with interventions that force us to act neurotypical.

It is burdensome to have to continually try to convince so many people that AUTISTICS ARE TRUE HUMAN BEINGS. I so much appreciate my autistic friends and allies especially on the days I feel down about the way I am perceived as not quite a real human being. This is why we so much need each other – so we can take turns holding the space for one another when it seems personally hopeless. And onward we go living our lives to the best of our abilities sometimes taking the tickets others extend to us to be part of their world.

And when people don’t willing give me a ticket to participate in the human race – well I hate to say this, but I have learned how to sometimes steal tickets and force my way in at times. I hate stealing, but sometimes it is better than being denied access. The devil part of me wants autistics to go to stealing tickets classes rather than social skills groups. It would be great to learn to take our place in the world being who we are rather than being made to act the part of who we are not as the only way to be allowed access to membership in the human race.

Inclusion is great when it happens, but it puts me in the position of being dependent upon your benevolence to extend it to me. Even though inclusion is meant to be a good thing, and it often is, inclusion also practically turns out to mean that you get to decide when, where, if and for how long I will be given the ticket to be part of humanity.

I am near retirement age and tired of needing to continually wait for society to bestow my own humanity upon me and to act as if that is really theirs to extend to me when in fact it is not! Because you see, regardless of what you believe or how you act – I ALREADY AM A HUMAN BEING.”

If you have enjoyed reading this piece of amazing writing from Judy Endow you can follow her on Ollibean here or please feel free to show your support by  visiting her web site at  http://www.judyendow.com .

 

The Illusion of coping…. Exploring the Impacts of Sensory issues for those with High Functioning Autism within the Workforce.

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A key component expressed by adults with HFA (and their parents) when taking into account educational and workplace experience, is  the negation or lack of understanding given to their sensory and social needs.

A pivotal aspect of this is that, regardless of how highly advanced the skill sets of adults with HFA may be, or how pertinent their qualifications are to their positions within the workforce, their sensory issues and social difficulties are still being viewed negatively.

Often these sensory difficulties are interpreted as a failure to meet the needs of the workforce environment by both employers and workforce agencies alike.

“Despite my son’s TAFE qualifications, it is almost impossible for my son to compete for a position in the open workforce. The main reasons are probably his communication problem and not being able to work under pressure.”                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                           

One adult with High Functioning Autism described his experience in this way:

“I have found the current emplacement services to be poor. I tire of dealing with a world that places more emphasis on sociability and likeability than on actual skill. I tire of seeing idiots that are less capable than me get positions, just because they can play the social/political games”                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                     

This negation of personal skills due to sociability issues can lead to a harmful sense of alienation for individuals with HFA due to the internalisation of the many negative and damaging comments which erode their levels of self-esteem, within the context of the workforce.

“I’m 45, worked full-time for 29 years, but have not worked at all this year. Two positions I’ve had I held for 10 years each, but in every job I’ve been a complete social failure. I’m reluctant to get another job, and experience another social failing.”                                                                                                                                                                                                                                                                                                                                                                 

Such statements support the urgent need for understandings regarding the importance of finding the right form of employment, both in terms of qualifications, skills, interests and individual sensory and social supports, to be taken into account.

Levels of support currently experienced within the workplace.

Further evidence of the need for appropriate sensory considerations and support can be found in the expressions of those adults with HFA currently within the workforce.

Of the 34 adults who responded to the question:

What types of support are being received at work?

Only 5 indicated receiving support from specialised workplace agencies.

The majority of respondents indicated that their employers were aware of their conditions yet less than half reported receiving specific considerations from their employers.

Of those who did report receiving special considerations those considerations were expressed in this way;

“My employers are flexible with what I can handle, e.g. they don’t put me on customer service or phone work”.

“My boss provides specific instructions for me for my tasks, as well as informing others”.

“I receive instructions in both written and diagram form”.

The levels of support that employers provide in these instances can be seen as minimal.

Only one participant indicated receiving consideration of sensory issues other than social contact through “special lighting for sensory issues”.

When responding to the question as to what types of support would be desired at work, the majority of respondents stated the need for greater understanding, recognition, respect and awareness of their HFA needs within the work place from others. 

A further subset within this group consistently noted the need for greater social skills and communication support as well as the desire to access workplace counselling.

The Illusion of Coping

This survey further found that there were a subset of adults with HFA who express showing an awareness that they appear to be coping with the social aspects of educational or workforce environments but that they are indeed still experiencing difficulties with sensory issues.

These participants describe that, even though they mask their difficulties because of their awareness of the behaviours that are expected of them, they are still experiencing significant social and sensory stress.

“For me, learning how to be social doesn’t make it easier or less stressful because it’s still against my natural grain. If I behave in a socially normal way, then that’s how people perceive me, and I have to keep up that standard which is impossible. I know how to act normal, but I don’t want to have to.”                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                

In this expression the demand placed on those with HFA within work place environments which are not sensitive or responsive to their needs, creates a sense of personal onus on the individual with HFA, to behave in ways that are socially acceptable yet uncomfortable for them.

This is reflected in the following statement in which the illusion or “façade” of successful participation in the workplace is described not as success but as forming the basis for the hope to be able to leave the workforce all together.

“I hope to be able to keep up the facade till the house is paid off so I can revert to total privacy and start to catalogue and read the thousands of books I have.”

Within this study there are several clear expressions by adults with HFA which indicates both their high levels of self-awareness and an acknowledgement of the need to reduce social and sensory interactions by having more control over their work environments in order to create a healthy and sustainable work situation.

“My goal is to have the qualifications that will allow me to have much more choice over type and situation of employment so that I can work in my field but in an environment and under conditions that are conducive to a more balanced lifestyle, mental and physical health and the chance to have my skills acknowledged.  At the moment I work in a retail setting…and it’s having a heavy toll.”

Adults with HFA are beginning to acknowledge, define and give voice to the multiple sensory and personal difficulties they encounter within the workforce.

Their voices are expressing that although the perceived ideals of success for adults with HFA in the work force have predominantly been based on the ideal of full-time employment, or the level of income achieved, there are also other determining factors which contribute to workforce success for adults with HFA, which are far more complex and require greater recognition.

Central to these issues are the needs for those with HFA to be able to:

Successfully engage in areas of personal interest both within education and employment.

To have their skills and qualifications appropriately utilized and recognised.

And to have their sensory and social requirements understood by employers and taken more clearly into account within daily workforce practice.

 Conclusion

Overall the experiences of adults within this survey suggests that there is a significant disconnect occurring between the policies designed to create educational and employment equality for adults with HFA and the lived experiences of those with HFA.

This disconnect between policy and practice that can be viewed as operating within 3 key areas of experience.

Lack of appropriate educational opportunities and support.

Lack of support within employment agencies and lack of opportunities within the field of employment.

The need to recognize that the current negation of the skills of adults with HFA are being further compounded by a lack of understanding and accommodation of their sensory needs within the workforce.

These 3 areas of distinction lead both parents of young adults with HFA and adults themselves, to question and contest the validity and success of policies that preference under resourced, unsupported, misunderstood and unfulfilling workforce participation for adults with HFA, above honouring and acknowledging their needs for self-esteem, recognition of qualifications and sensory and social supports.

A key way of addressing these issues would be for government initiatives to follow the suggestions of adults and parents who consistently argue for the need to create both education and employment programs that build on and harness the individual skill sets of those with HFA whilst acknowledging their sensory and social needs instead of continuing on with generic or blanket approaches which create frustration and a sense of harm for adults with HFA.

The benefits of taking an individually tailored approach toward education and employment may create the potential to both activate and validate the diverse skill sets adults with HFA currently demonstrate through their participation within voluntary organisations.

In this way workforce policies may be able to offer a new way of perceiving and understanding the interests, skills and potential of those with HFA in a manner that increases self-esteem through recognising both the qualifications and needs of adults with HFA.

Such measures would enable adults with HFA to successfully and safely translate their skills into equally sustainable and fulfilling workforce participation.

Research analysis compiled, conducted and written by Seventhvoice.

 

The hidden wave of women with undiagnosed Asperger’s Syndrome.

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If you’re a woman who feels that you don’t ‘fit in’ with those around you….

Or that you have always been, somehow, just that little bit different to everybody else…

Or that you never seem to see things the way others do….

Never seem to find the right words…

Or know instinctively the right social cues to follow at any given time….

Or you’re a shy, introvert who loves her family and seeks little experience from the outside world…

Or even if you simply feel, as if you are an actress, caught somehow on the outside of your own life….

Always looking in, but rarely truly, outwardly taking part……

Then chances are you’re not likely to admit it out loud to anyone, for fear of being thought of as strange, depressive or delusional.

As women, we’re encouraged not to express our discontentment at the world.

That to do so would mark us out as maladaptive in some spectacularly, psychologically, disturbing way.

We’ve been told for so long that we’re not allowed to admit to feeling socially awkward, shy or simply genuinely disinterested in the pantomime of other people’s lives as they go on all around us, that in order to cope some of us have chosen instead to pretend.

To mimic that which we’re told we should say, be and do.

Which is fine for a while…… but only a while….

Eventually, those of us who genuinely feel as if we don’t ‘fit in’ or that we are ‘different’ in some unknown way to everybody else, will head off in search of answers.

For an increasing number of women, those answers are being found within the growing body of knowledge surrounding the way in which Asperger’s Syndrome presents in women and girls.

More and more women are, if not self-identifying with Asperger’s, then at the very least beginning to question whether or not their quirks and unconventional character traits, (which in the past would never have been spoken of and hidden away), are consistent with the presentation of Asperger’s Syndrome in women.

Yet even throughout this process of questioning the self, which for many can become an outright mission to find the answers that have eluded them, women who  suspect that they may be Aspies, are still experiencing a severe lack of understanding and acceptance from those who are the professionals in the field.

Women in their waves, are now crashing up against the harshness of psychologists, whose glory days are so far away from the realities of the here and now, that they are unable to turn their gaze away from the hazy thinking of the past, long enough to truly listen and engage with what it is that the women of today have to say.

Let alone even begin to understand why they are saying it.

As a consequence of this, many women are either being turned away and denied a diagnosis or worse still, being misdiagnosed with some errant version of a personality disorder, by those who should know better, yet still remain unable to refrain from placing the blame of every woman’s “affliction” on some variant of depression.

The damage this form invalidation is causing to a subset of women, who have already lived at least half of their lives, feeling so out-of-place that they’ve had to hide who they really are and what they really feel, is immeasurable.

Yet despite this onslaught of diagnostic invalidation, women with undiagnosed Asperger’s are not going away.

Instead they are taking to forums, forming alliances and sharing their all too familiar stories, with each other.

And the more they share, they more they are becoming aware that they are not alone.

That this is happening to women everywhere, from every variant of socio-economic background, culture and region.

There is a wave of officially undiagnosed women with Asperger’s Syndrome out there, treading water, not too far from shore, just waiting their turn and sooner or later, they will land.