The problem with the Mask Analogy for Women with Autism

Digital art by Rik Oostenbroek

A mask is a false external covering.

It can be worn to conceal a person’s true identity for better or for worse.

The idea that Women with High Functioning Autism are not being adequately diagnosed, simply because they wear masks, also carries within it the ideation that all women with Autism intentionally try to conceal their true selves in order to ‘pass as normal’.

This in turn implies that all women with Autism willingly engage in the act of perpetrating some form of female deception which, in turn, somehow creates the inability of professionals to recognize them for who they are.

The idea that women are fiendish creatures, capable of deceiving men, is not a new one.

In fact, that particular idea is as old as humanity and has been used successfully over the course of history to deny women the same basic human rights and considerations as men.

Which is why I’m not convinced that the increasingly accepted notion that women with Autism are being misdiagnosed because they “mask” their symptoms, is an entirely valid or correct one.

So let’s look at this concept of ‘masking’ a little more closely.

Women with Autism will often express the feeling that they’ve ‘never fit in’ with those around them and that they’ve always, including childhood, felt somehow ‘different’ to others.

As far as I can see, such expressions are not consistent with the idea of ‘masking one’s true self’ from others.

If anything, most women diagnosed later in life often express a sense of both exasperation and sadness over the fact that no one close to them either noticed or addressed their difficulties as a child.

So what are we to make of these facts?

Are we to say that the inability of those around them to acknowledge their differences and their needs, as children (girls), somehow created in them a desire to ‘pretend’ or ‘mask’ who they were?

To me such rhetorical connections make no sense at all, as it would be more accurate to say that women with Autism experienced having their needs ignored as children, rather than saying that they ‘masked’ their needs under such circumstances.

Whilst, it may be fair to say that as we grow older we learn how to try to ‘fit in’ better, I don’t think it is equally fair to say that we learn how to ‘mask’ ourselves better.

We don’t ‘mask’ ourselves but we do try our best to ‘fit in’.

As far as I know, the desire to ‘fit in,’ to not stand out and therefore become the object of ridicule, is a trait that is common to all humanity and not just those of us who are female and have Autism.

And this is the problem with the mask analogy.

Everyone tries to ‘fit in’.

Not everyone, however, practices deceit in order to do so.

We women with Autism are a profoundly honest lot.

Our honesty, along with our lack of awareness of social cues, forms one of our key features.

We are so honest with other people that our honesty often see’s us labelled as ‘blunt’ or ‘rude’.

Given these facts, perhaps someone can tell me just how it is, that we ‘mask’ our true selves again?

Oh yes, that’s right, we ‘pretend’ to be ‘normal’.

Well obviously we’re not doing a very good job of it, are we, if we’re constantly being accused of being too ‘blunt’ or ‘rude’.

We also apparently make ‘easy targets’ of ourselves because in reality, we are more often than not, the people who are lied too and taken advantage of  by others.

Given all of this, one could ask; just whose perception of ‘normal’ are we applying here and whose definition of ‘pretending’ or ‘masking’ are we using?

A mask is usually used to denote a form of visual perception, a false front, a concealment.

So are we being accused of ‘masking’ our true selves simply because we look so normal?

If that’s the case, may I just point out one simple fact, of course we are going to look like human beings because we are human beings.

Women with Autism are not some kind of exotic sub-species, (demarcated by purple spots or pink hair), any more than men with Autism are.

We can’t change who we are and in all honesty, most of us don’t try to ‘mask’ who we are either.

What we do is try to ‘fit in’ so that we can avoid being ‘easy targets’ for disreputable people to hit.

And what makes us easy targets?

Our trust, our propensity for taking people at face value and our inability to discern when someone is deceiving or lying to us.

Clearly the only things we need to get better at ‘masking’  are our vulnerabilities. Oh but wait, isn’t that exactly the very thing we’re already meant to be so blindingly good at?

‘Masking’ our true selves so well that we confuse professionals?

Think about it.

Is the mask analogy, truly one that  fits, women with Autism?

 

Understanding the Calculus of Communication – Counting the Cost of Getting Lost.

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Do find yourself becoming bored when others talk excitedly about ‘sales’, ‘the latest fashion trends’, ‘bargain basement make up prices’ or ‘who said what about whom’?

Do you often feel like you’re the only person in the world who doesn’t understand why family, friends and large pockets of society become excited over minor events or inconsequential trends?

Do group conversations confuse you?

Do you find yourself still pondering the first topic of conversation while those around you move on to talk about other things?

Do you either miss or misinterpret sudden changes in tone of voice, facial expression or body language?

Do you sometimes feel as if you are always the last person in the room to get the joke? Especially if it’s illogical or cruelty dressed as humor?

If you’ve ever felt, even one of these things, then perhaps you’ll be able to understand (or calculate) just how confusing and disparaging social interactions can be for someone with Asperger’s Syndrome.

For many years I used to tell others that I had a low ‘social IQ’.

The problem with trying to explain my social difficulties in such a way were two-fold; either people wouldn’t understand the concept of having a ‘low social IQ’ or they’d assume that I’d tried to make some kind of awkward joke.

I’d often wonder why it was that people would believe that I’d waste my time making fun of, what for me, was (and still is) a very real difficulty.

This inability to stay afloat in social situations, despite working so hard internally to do so, alongside the social expectation that I should always be seen to be able to do so (pretend), or risk rejection as an inept social outcast, still bugs me.

Sometimes it felt as if everyone else has been born with some innate social rule book hardwired into their brains.

Everyone that is, except me.

Yet, whenever I’ve analyzed these feelings of ‘being different’ of not knowing the rules, I’ve found that the analogy is not entirely true.

Because, if the ability to communicate socially were simply just a matter of learning the right rules, which is a task that I am usually good at, then I’d be able to learn those rules, internalize them and move on in much the same way that I’d learned and internalized academic concepts.

Therefore, social interactions are not just about knowing the rules or knowing when to nod in all the right places or learning when to send forth a smile or scatter a frown here or there.

numbersThey appeared to be both so much more complex to me and yet somehow so much easier to navigate, than understanding calculus is, to others.

So I decided to draw on the calculus analogy when trying to explain just how difficult I found social interactions, particularly in group settings, to my family and friends.

I’d ask them if they’ve ever thought of math whizzes as people who have somehow been born with an internal calculator.

One that not only instantly enabled them to recognize what sort of math problem they’re dealing with but also simultaneously provided them with exactly the right formula to apply in order to solve any given mathematical equation within seconds?

Then I’d ask them to imagine how they’d feel if they suddenly found themselves sitting in a room full of math whizzes who are all busily going about their day, solving their respective math problems and chatting to each other about the life of Pi?

How would they feel about their own math skills if they were to find themselves in such a situation?

Would they try and convince themselves that they are just as good at maths as every math whiz in that room or would they admit that they feel like they’re in the wrong room and there’s no way they could keep up?

Most people, I’ve found, seem to be able to relate to the experience of feeling lost, if not awkwardly confused, or completely disinterested in performing or talking about the joys of mathematics.

So, once they’d admitted that they’d feel awkward, lost or disinterested, I’d tell them that I find social interactions, especially in group settings, every bit as difficult as they’d find it to be in a room full of math whizzes, because to me, trying to keep up with the flow of their ideas, as well as trying to interpret the tone of their voice and the meaning of their facial expressions simultaneously, was just like being expected to suddenly solve a complex mathematical equation whilst discussing Pi.

It’s hard work for me.

I can’t instantly look at someone who’s smiling and know if it’s a real smile or a false smile.

I have to work it out.

In just the same way that most people admit they’d be bored witless and unable to participate if they were surrounded by people who only wanted to talk about Pi, I can’t see the point of participating in a conversation that I can’t understand or view as boring.

When it comes to social interactions, particularly conversations, I don’t have that internal social rule book, so to me conversations can be hard work.

As much hard work as it would be for most people to sit a spot calculus exam.

Yet it seems, everyone else still has the advantage because only one of us is being constantly expected to be delighted with both the prospect and the reality of having to sit that spot calculus exam every single day.

Social communication obviously isn’t as difficult as engaging with calculus to most people, if it were; they wouldn’t continue to do it.

Nor would they expect others to treat them differently simply because they lacked the ability to fully understand, appreciate or enjoy chatting about, calculus.

And yet……..

Asperger’s Syndrome in Women – Different not less

Art by Igor Mudrov

Art by Igor Mudrov

I have noticed that whenever women with Asperger’s Syndrome try to speak up and share the fact that they often experience greater levels of discrimination,

medically, in terms of receiving an accurate diagnosis at an early age and socially, in terms of having their diagnosis recognized and understood by others,

they are also often accused of suggesting that men with Asperger’s Syndrome must therefore, somehow,  have an easier life.

This is simply not the case and it irks me so that women with AS,

who seek simply to share their truths,

are so consistently having the validity of the expression of their own personal experiences

twisted and therefore,

disregarded in such a way.

Women with Asperger’s Syndrome  – Different not Less.

 

Autism – Absurdities and Atrocities

Artwork by JudasArt

Artwork by JudasArt

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

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

For example, consider the following two statements regarding Autism.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I prefer statement 2.

How about you?

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

As I see it – Society treats males with Aspergers Syndrome differently to females with Aspergers Syndrome

Art work by Elena Vizeskya

Art work by Elena Vizeskya

I know there are many male Aspies who feel that there are no differences between their experiences of Asperger’s Syndrome and women’s experiences of Asperger’s Syndrome.

On one level I understand this realm of thought because essentially, if you’re only talking about the way in which we experience being socially overwhelmed, yet at the same time feel socially isolated, or being constantly misunderstood, or socially awkward and confused, then, yes these feelings/experiences are the same.

However, where they differ, is the way in which these experiences are being both understood and accommodated for by others and the consequences of that.

In simple terms, women can never truly know what it feel like to experience all of the social expectations that being a male of the species involves just as males can never truly know what it feels like to experience all of the social expectations that being a female involves.

In most areas of life this male/female binary differentiation is understood, accepted and endlessly theorized over as to how it came about.

Yet somehow, when it comes to the experience of living a life with Asperger’s Syndrome within a society in which it is already well recognised that this gender division impacts on such things as financial outcomes, employment opportunities, and still in many areas of the world, civil rights, let alone personal subjective experiences, some still seem to insist that women with Asperger’s Syndrome must experience their Asperger’s Syndrome in the same ways that males do.

From my experience this is simply not true.

My brother, for example, has always been excused from attending family occasions, a friend’s party or any form of public gathering, without a word of criticism.

More often than not, other family members can be heard willingly offering up excuses for him. ‘Oh you know Al, that’s just the way he is. He’s never liked being around crowds (including being in a room with more than 4 family members at one time).

Yet, if I feel that I do not wish to or am unable to attend a family occasion, a friend’s party or any other form of public gathering to which I’ve been invited, I am bombarded by words of criticism.

‘Oh, she’s snubbing us’. ‘How rude of her not to bother to attend.’ ‘I suppose she thinks she’s too good to bother with us,’ or the good old ‘She’s always so disorganized’.

In this instance, both my brother and I may have the same reasons for not wanting to attend whatever it is we’ve been invited too, i.e., there will be too many people, too much noise or we’re feeling too personally overwhelmed to deal with a group of people we don’t know, or we’re afraid of being socially awkward – again, of we’re simply already worn out from having had to deal with other social occasions.

Yet despite the fact that we may choose not to attend these social gatherings for the same reasons, the judgements and criticisms of others towards us as individuals can be and are very different.

My brother doesn’t have to put up with being treated as if he has done something terribly wrong or highly offensive by others if h chooses not participate because of his Asperger’s.

Whereas I, on the other hand, due to my Asperger’s, am continuously being placed in a position in which my integrity as person and my loyalties as both a family member and a friend are constantly being questioned.

I believe that the only explanation for the disparity between the ways in which it’s seen as acceptable for my brother to avoid social gatherings, whilst I experience being berated for the same behavioral need to avoid social gatherings, is gender.

He’s a guy, therefore its okay for him to not always want to be social.

I am a gal, I’m supposed to live for social occasions, to enjoy them, to want nothing more than to celebrate a reason to get all glammed up and engage in chit-chat.

Wrong.

I don’t enjoy social occasions, I don’t want to have to get glammed up just to stand around and have to try too hard to make small talk with people I may or may not know.

I am as socially awkward as my brother,( who incidentally is also never expected to get whatever the male version of ‘glammed up’ is), yet these facts are constantly being ignored and I think they’re being ignored simply because I’m a woman with Asperger’s Syndrome and apparently women with AS are supposed to be able to cope.

We’re supposed to be able to successfully mimic the social niceties of others so well that we can “pass ourselves off as being normal”.

And more than that, we’re also supposed to want to “pass as normal”.

It’s what we live for.

It’s what we take pride in.

Apparently there is no greater compliment for a woman with Asperger’s Syndrome than – “oh, I never would have thought there was anything ‘wrong/different’ about you. You don’t look/act like some with Asperger’s Syndrome.”

Wrong.

When it comes to Asperger’s Syndrome and gender, let me tell you that I hold as little interest in having to play the social game of ‘passing as normal’, as my brother has.

The key difference between us on this score is that only one of us is being accepted for the social differences/difficulties that our Asperger’s causes us, and it’s not me.

If you feel that you can offer up an explanation for this binary phenomenon between acceptance of the AS experience in a male, yet not in a female in the same family, other than gender of course, then I’d love to hear it.

Is Autism a Disability or a Difference ? BY Judy Endow

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“So many ideas in the larger autism community often become a debate. As an autistic this black-or-white, choose-your-side sort of thinking is very neurologically friendly to me. I like clear choices. But I also believe we are often unwittingly duped into believing we need to choose a side only because the idea is presented as a dichotomous choice.

“Is autism a disability or a difference?”is one of these questions posed as a dichotomous choice in the autism community. The way the question is posed gives the impression that there is one correct answer.

When Autism is a “Difference”

Many autistic adults would like if autism were recognized as a difference rather than a disability. Many in this group are the walking, talking autistics. We can go out in public by ourselves. Some of us are parents. We are your friends, neighbors and co-workers. We might seem to be a bit odd, but we can fit in enough to at least be allowed a place in the world at large.

Even so, being out and about in the community poses significant challenges. The sensory overload and neurological processing differences dictated by our brain along with ever present challenges with communication and conventional social understanding are such significant differences, even though we can accommodate for them, we are usually exhausted from doing so by the end of the day.

It seems to me that when we are able to be out and about in our communities unassisted by a hired person we are often expected to look and act like typical people regardless of the challenges imposed by the neurological difference of our autism. Because we appear to be like others, our difficulties and needs are thought to be our own personal problems. Even though we have an Autism Spectrum Disorder diagnosis that by definition means we have significant difficulties in many areas of life, others often look at us and ascribe negative intentionality and character flaws to us.

When Autism is a “Disability”

For some of us, the way our autism plays out in our body means we are faced with numerous obstacles to overcome every day of our lives. We may need communication devices, occupational therapy equipment and to employ personal care workers. For those of us whose autism presents challenges with these kinds of needs – we understand the disability aspect of our autism.

We often need a hired person to accompany us when we go out into the community or to support us so that we can communicate. In fact, we may require 24/7 support staff. And for some, our autism plays out in our body in such a way that people can see it as we approach! For us, people can see we need help. Rarely do others look at us and attribute our difficulties to laziness, lack of motivation, self-centeredness or any other negative character trait.

But because our autism is so visibly noticed along with the significant support we often need, people make other sorts of assumptions about us. Our needs are so obvious that people do not always consider that we also have strengths and abilities along with likes and dislikes. Often we are placed in menial jobs as adults (if we are even deemed capable of working) and our support staff is switched around as if people are interchangeable and relationships do not matter to us. We are not often seen as people who have preferences, desires, abilities, skills and talents as the time and energy of others are focused on the meeting deficits and needs imposed by our disability.

Negative Outcome of Choosing Disability OR Difference

As an autistic person when I am asked to choose one – either “disability” or “difference” – I feel like I am being asked, in essence, which part of me I would like to ignore. When I choose “disability” it means my talents, strengths, abilities and preferences are ignored. When I choose “difference” my very real difficulties and needs are not only ignored, but I am often blamed for what others consider my stubbornness in hanging on to negative “character flaws.”

Might We Incorporate Both Disability AND Difference?

What if we all chose both disability and difference? Would we then be totally ignored or totally supported? There it is again – another dichotomous choice posed as if it were a real choice!

In the meantime, please know when you ponder whether autism is a disability or difference this is a false choice sort of deal. It serves nobody well and has poor outcomes. And yet we somehow feel that we need to choose between disability or difference.

Why is that?”

Written by Judy Endow.

See more at: http://ollibean.com/2014/06/20/autism-disability-difference/#sthash.NMT4ZQZ4.dpuf

Related posts: http://seventhvoice.wordpress.com/2013/10/11/autism-different-not-less-the-importance-of-belief-3/

http://seventhvoice.wordpress.com/2013/12/04/adapting-peggy-mcintoshs-paper-on-unpacking-the-invisible-knapsack-of-privilege-to-accommodate-and-reveal-how-neuro-typicality-constructs-its-own-unspoken-system-of-privileg/

http://seventhvoice.wordpress.com/2013/11/22/women-and-autism-how-one-womans-letter-to-a-psychologist-finally-helped-her-receive-an-asd-diagnosis-after-years-of-personal-invalidation/

http://seventhvoice.wordpress.com/2013/11/10/autism-form-an-adults-perspective-its-a-horrible-feeling-of-vulnerability-and-helplessness-to-know-that-the-non-autistic-world-sees-you-as-seriously-impaired/

http://seventhvoice.wordpress.com/2013/11/09/rising-to-meet-the-challenges-of-understanding-ourselves-as-autistics-in-a-non-autistic-world/

Chalk Word Lines of Separation by Judy Endow

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“Sneaky words, said with a smile,
While holding a piece of chalk,
To draw the dividing line,
Made by words,
Sounding alright on the surface,
But laden with,
Otherness.
Less Than
Different
Not US
And sometimes Not Quite Human

We are the people you call

  • Special
  • Low Functioning
  • High Functioning

You say we are in need of a

  • Peer Buddy
  • Peer Pal
  • Good Friend from Mrs. Jones Program

We are the

  • Inclusion Student
  • The community service hours other kids need

We sit

  • At the Peer Buddies lunch table
  • The Special Ed table in the Inclusion Room
  • On the Special Ed bench waiting for our short bus

During the school day you will find us in the

  • Inclusion Room (when it is our turn because they can only take one of us at a time)
  • Cognitively Delayed Room
  • Behavior Room
  • Emotionally Disturbed Room
  • EBD Room (Emotionally Behaviorally Disturbed)
  • Special Ed Room
  • Special Needs Room

We are so doggone “special” that after school we attend

  • Special Olympics
  • Special Arts
  • Special Night at the YMCA
  • Special Needs Social Group

Where every participant is just as special
And those who are not special are our helpers

 When we grow up we live in

  • Special Housing
  • Some of us in Section 8 rentals
  • Some in group homes
  • Some in county care facilities
  • Some of us are so special that there isn’t even a special enough place for us so we stay living with our parents.
  • Some of us are not quite special enough to get on a housing list and yet cannot maintain on our own so we stay living with our parents.

As adults too many of us spend our days

  • In Special Programs (if our county has them)
  • At ARC (if our town has an ARC)
  • At Sheltered Workshops (if one is available)
  • In Supported Employment (if we qualify)
  • Looking for a job (on the days we are able to)
  • On the couch in our parent’s home (because other options are not available)

Because we are so deficient
In ever so many ways
Whenever we do something ordinary
like zip up our jacket, ride a horse, or answer Jeopardy questions you describe us as

  • Awesome
  • An Inspiration

I don’t understand this. If my friends and I are such awesome inspirations to the rest of you

  • Why is it that we are in two distinct groups – US and THEM?
  • Why is it that your group always holds the chalk?
  • Why do you keep using your chalk to draw lines that divide us?
  • Why do you want me on the other side of your line – away from you?
  • And why do you think this is good?”

By Judy Endow

This is just an abstract from her amazing poem, “Chalk word lines of separation”, I encourage you to read it in its entirety on her blog site at http://www.judyendow.com/advocacy/chalk-word-lines-of-separation/