Things I wish people would stop saying to those of us with Asperger’s Syndrome

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

“You can’t possibly have any understanding of yourself and be Autistic at the same time. That just doesn’t happen’.

Well actually, yes it can and it does happen.

Individuals with Asperger’s are hyper aware of their feelings, their environment and those around them.

So hyper aware in fact that we experience sensory over load.

Yet every time we, as people, try to share our understandings of ourselves with others and  attempt to have our own personal views and needs both met and respected, we run into a brick wall of prejudice.

One that ensures that instead of being listened too, we’ll constantly have to  deal with having our personal truths questioned simply because of the mistaken belief that we are a particularly insular and self-absorbed type of person.

Due to this, instead of  being listened too when we try to talk about our feelings, we usually end up  being told things like:

-‘Why do you always look so sad? You should smile more”.

Well here’s a tip.

Why not try believing us when we tell you that we’re not sad we’re just so completely and utterly lost in thought that our faces automatically relax.

This process of relaxation means that our mouths and lips relax too.

And just in case you’re not up to speed with anatomy, it actually takes muscle contractions to create a smile.

So if a person’s face is completely  and I do mean completely relaxed, there will be no muscle contraction, hence no smile.

Besides, we are aware of the fact that we’re always having our facial expressions read by those around us, as if they were some kind of social barometer that might, potentially, give the reader some kind of insight as to what we’re feeling.

We’re also equally used to being blamed for an observers inability to read us due to our perceived lack of facial expression, whenever such exercises in futility fail to succeed.

Which is, once again, why you should believe us when we tell you that we’re not sad, just lost in thought.

Perhaps a far kinder thing to do would be to try asking us what we’re actually thinking about.

By approaching us in this way you’ll give us an opportunity to bring you a little closer to our world rather than pushing us away with false observations that only serve to make us feel even more self-conscious than we already do.

-‘You should get out of the house more. You’ll feel better for it.’

For those of us who are feeling overwhelmed due to sensory overload, the last thing we need to be told is to “get out of the house’, or to ‘go out and be around people’.

What  we really need when we’re feeling overwhelmed is to be left in the peace and quiet of our own surroundings and to be allowed to withdraw into our own safe space, without any ensuing argument or being accused of being anti-social.

So please, please, please try to understand that when we insist on the need to have our own space and to take things at our own pace, we’re not trying to be willfully stubborn  or malignantly anti-social.

We’re simply trying to do whats best for us by being mindful and respectful of our own needs so that we don’t end up in a full on ‘meltdown’.

Usually it takes years for us to learn how and when to walk away from situations before they escalate into a ‘meltdown’ so please understand that doing so is a sign of our maturity, and not our immaturity.

Please spend a little more time trying to love us and a little less time trying to  judge us.

Thank you.

 

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The Gas-lighting of Women and Girls on the Autism Spectrum

Artwork by Mirella Santana

Of all the traits attributed to Women on the Autism Spectrum, there remains one that not only continues to go unrecognized as a valid trait but has also suffered the fate of being reconstructed by professionals as a rationale for denying Women a diagnosis.

The trait I’m referring to is that of developing a strong sense of self-awareness.

In almost every description pertaining to the experiences of Women with Asperger’s Syndrome there is evidence of the development of an early, inexplicable sense of ‘otherness,’ to be found.

This sense of ‘otherness’ expands exponentially as girls grow older and develops into a keen sense of self-awareness.

Their strong sense of self-awareness in turn, increases their sensitivity toward any and all experiences that suggest or confirm their perceptions of themselves as different.

Undoubtedly, whilst at school, undiagnosed spectrum girls will find themselves showered, almost daily, with an endless array of situations that expose their responses and reactions as differing from those around them.

As a result, many spectrum girls may find it difficult to relate to their peers and feel that they have very little, if anything at all, in common with them.

Given that young girls are not yet bound by the pressure to conform, many will quiet happily choose to pursue their own interests instead of seeking to feign an interest in the activities of their peers.

Early schoolyard experiences can therefore be seen to reinforce and exacerbate the already strong sense of ‘otherness’ that many young girls on the spectrum feel yet do not necessarily view as being an issue for them.

It is not until the teenage years arrive that ‘feeling different’ truly becomes an issue.

During this time, the combined weight of parental, peer and societal pressures to conform begins to bear down on them.

Suddenly they find that any and all previous levels of tolerance and acceptance towards their uniqueness of being, are replaced with the message that their right to happily pursue their own interests, has been irrevocably and irrationally rescinded without their consent.

Now they are expected to act like everyone else and enjoy participating in only those activities that are deemed appropriate for teenage girls to engage in.

These radical and unexpected changes usher in a period of overwhelming personal confusion and sensory overload as the ability to escape into their own comfortable zones of ‘personal interest’ are stripped unceremoniously away from them.

During this time, some Spectrum girls will begin to experience melt downs due to not being able to escape either the sensory or the emotional pressures that surround them.

Often these meltdowns will mistakenly be viewed as deliberate acts of rebellion and punished accordingly.

Some spectrum girls, on the other hand, will set their minds to the task of trying to figure out exactly what the new rules of engagement are in order to seek out any loopholes that may still allow them to continue to pursue their own interests without falling foul of their peers.

This is often a process of trial and error which still has the potential to attract punishment for any and all inadvertent social infractions.

Yet no matter which option an undiagnosed teenage girl chooses the consequence all tend to lead to the same experience of psychological harm.

Psychological harms experienced include:

An extreme sense of personal disorientation

Confusion over what has taken place.

Erosion of their formerly strong sense of self.

Self-doubt.

The onset of the belief that being different is equivalent to being wrong.

Creation of the belief that no one will ever like them for whom and how they truly are.

Acceptance of the idea that they cannot be themselves and still be liked.

The combination of all of these psychological harms explains the overwhelming sense of social confusion, lack of self-esteem, lack of confidence and the propensity for self-doubt that many (both diagnosed and undiagnosed) adult Autistic women report experiencing.

It is worth noting that all of the negative messages that undiagnosed Autistic girls/women experience whilst growing up, produce the same responses that one would expect to find in an individual who has been the victim of prolonged emotional and psychological manipulation or abuse.

Another term that has more recently been applied to describe the way in which this form of emotional and psychological manipulation can be subtly delivered is Gas-lighting.

Gas-lighting is renowned for creating a sense of personal disorientation and self-doubt in those to whom it is applied.

Yet sadly, the process of gas-lighting for undiagnosed teenage girls does not end upon their reaching adulthood.

For many women who recognize themselves within the folds of female Autism later in life, the process of seeking understanding and validation in the form of a diagnosis from a professional, often leads to yet another round of gas-lighting.

If a woman expresses the capacity to recognize and understand that she may be Autistic, she’s then told by professionals, that she’s too self-aware to be on the Autism Spectrum and is summarily dismissed.

If a woman expresses feeling that she may have been let down by others or betrayed by a society that only values certain ways of being, she is told by professionals, that she has a persecution complex and is summarily dismissed.

If a woman expresses the capacity to feel love, empathy or even hints at the potential for having a sense of humor, she’s told by professionals, that she can’t be on the Autism Spectrum as Autistic people (according to some) lack the ability to feel any of these things.

If a woman’s married, in a relationship or has children, she’s told by professionals, that she can’t be on the Autism Spectrum as she obviously has both the capacity to maintain a relationship and care for others. Autistic women (supposedly) cannot do this.

If a woman is single, reclusive and/or unemployed, she’s told by professionals, that she’s suffering from depression and that all of her other issues will go away once she begins medication and starts getting out more.

And worst of all, if a woman is educated, articulate and well-informed about Female Autism and why she feels she belongs within it, she’s often told by professionals that she’s making things up about herself in order to gain attention and is instead diagnosed as having either a Personality Disorder or Bi-Polar Disorder.

The tendency of those within the psychological profession to constantly deny the validity of an Autistic woman’s understandings of herself by instead reinterpreting and reinventing her words as evidence that she is too self-aware to be on the Autism spectrum, is in itself, the ultimate form of Gas lighting.

Asperger’s Syndrome’s missing trait

best-life-quote_325404-4 There are many websites, blogs and books that provide lists of traits that are purportedly said to be the common signs of Asperger’s Syndrome in Females.

However, each and every one of these lists has a tendency to focus exclusively on the outward signs of Asperger’s Syndrome in women.

Signs like:

‘difficulties with social interaction’,

‘dislike of small talk’,

‘poor co-ordination’,

‘fixation on special interests’,

‘preference for spending time alone’

I‘m sure by now we are all nauseatingly familiar with the above list of symptoms.

Perhaps we’ve even become so familiar with these lists that we’ve stopped looking for the traits that have been missed.

Well here’s a trait that continues to remain unlisted, although I cannot for the life of me understand why this should be so, as it is a trait that has been mentioned over and over again, by every woman with Asperger’s Syndrome that I’ve ever communicated with.

In fact, it may even be the one trait that is common to every woman with Asperger’s Syndrome.

And that trait is:

The early personal recognition, awareness or sensation that they feel, think and perceive the world differently to those around them.

                “I can’t remember a time when I didn’t feel different to everyone else”.

                “I’m pretty sure I was born different. No two ways about that.”

                “Different is something I’ve always been.”

                “I must have been the oddest child on earth. I know I certainly felt that way.”

“Evan as a kid, I felt, I don’t know, just different to my sisters and brothers.”

Given that this sense of personal awareness occurs long before the outward signs of Asperger’s Syndrome appear, it is perfectly logical to hypothesize that the early onset of this awareness may indeed be the exact reason why the outward signs of Asperger’s first appear to others.

“I didn’t like doing the same things that kids my age did, so I used to just go off and do my own thing.”

“I could never understand why other girls wanted to play with dolls. Dolls were boring to me.”

I believe that  this early personal sense of ‘not fitting in’ or of ‘not belonging’ within one’s own family, peer group or circle of friends, needs to be considered as one of the fundamental indicators of Asperger’s Syndrome or High Functioning Autism in females.

It therefore strikes me as extremely odd that researchers, psychologists and other related professionals’ continue to ignore the one experience that, so far, appears to be common to all AS Women, and instead focus on ideas such as ‘masking’.

Imagine how many girls could be helped if all it took to recognize their potential for being on the spectrum entailed the asking of just one simple question.

Do you ever feel different?

Does this post ring true to you?

Have you always felt different?