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 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?

Why Capitalism and Care – Like oil and water should never mix.

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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.

The lost soul inside.

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I am,

An open book,

With pages,

Missing.

 

I am,

An old film,

With frames cut,

Out.

 

I am,

An imposable puzzle,

With secrets,

Written on the back,

Of every piece.

 

I am like a memory,

Shattered into so many,

Small pieces,

That no one can ever,

Seem to remember me,

Whole.

 

I am,

An old pocket watch,

Lost in the sands,

Of time.

 

I am a little box,

With feelings locked inside,

But you can’t open me,

Because,

I have no key.

 

I am the kid,

That everyone see’s,

Yet still somehow,

Never seems to notice.

 

I am the child,

That speaks,

Yet no one ever hears,

The words I cry. 

 

I am the flame,

That will soon,

Go out.

 

But for you,

I will use,

The last,

Of my fire,

To keep,

You safe.   

This poem was written by my middle son just a few days ago. I know it has been tough on him growing up as the middle child, anchored as he is,  on either side, by siblings on the Autism Spectrum.

His words say it all and I am so very proud of his  extraordinarily sensitive and caring soul.

23 Things you can take for granted if you happen to be Neuro -Typical with Neuro-Typical children

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1. You can, if you wish, arrange to be in the company of people who share your own “neuro-typical status” most of the time.

 

2. If  you should need to move, you can be pretty sure of renting or purchasing housing in an area, that you can afford and in which you would want to live.

 

3. You can be pretty sure that your neighbors in such a location will be neutral or pleasant toward you.

 

4. You can go shopping alone most of the time,  and be pretty well assured that you will not be followed or harassed.

 

5. You can turn on the television or open to the front page of the paper and see people of your own “neuro- typical status” widely represented (in positive ways).

 

6. When you were told about your national heritage or about “civilization,” you were shown that people of your ilk made it what it is.

 

7. You can be sure that your children will be given curricular materials that testify to the existence of their “neuro-typical validity”.

 

8. You can arrange to protect your children most of the time from people who might not like them.

 

9. Whether you use checks, credit cards or cash, you can count on your “neuro-typical behaviour” not to work against the appearance of your financial reliability.

 

10. You can go into a supermarket or into a hairdresser’s without risking “being over whelmed by sensory stimulation”.

 

11. You can swear, or dress in second-hand clothes, or not answer letters, without having people attribute these choices to bad morals, or the inadequacies of  “having a non-neuro- typical status”.

 

12. You can speak in public to a powerful group without putting your “neurological status” on trial.

 

13. You can do well in a challenging situation without being called a credit to your “neuro-typical” class.

 

14. You will never be asked to speak on behalf of all the people in your “neuro- typical” group, everywhere.

 

15. You can remain oblivious of the “sensory needs and issues of non-neuro-typical persons” without feeling any cultural penalty for doing so.

 

16. You can criticize your government and talk about how much you fear its policies and behavior without being seen as an outsider.

 

17. You can be pretty sure that if you ask to talk to “the person in charge,” you will be facing a person of your own “neuro-typical status”

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18. You can easily buy posters, post-cards, picture books, greeting cards, dolls, toys, and children’s magazines featuring people of your own “neuro-typical status”.

 

19. You can go home from most meetings of organizations you belong to feeling somewhat tied in, rather than isolated, out-of-place, outnumbered, unheard, held at a distance, or feared.

 

20. You can take a job with an affirmative action employer without having co-workers on the job suspect that you got it because of your “neurological status”.

 

21. You can choose public accommodation without fearing that people of your “neurological status” will be mistreated in the place you have chosen.

 

22. You can be sure that if you need legal or medical help your “neurological status” will not work against you.

 

23. If your day, week or year is going badly, you need not ask of each negative episode or situation you’ve encountered, whether it holds “discriminatory” overtones.

Artwork by Sam Drawing

Artwork by Sam Drawing

These are just a few examples of the common everyday things that those of us  who experience Autism, Developmental delays, Brain Injuries, Chromosomal additions or deletions, or who are neurologically different, in any way,  can never  take for granted in our daily lives.

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So the next time you see someone struggling to do that which for you has now become so easy that  it’s taken for granted, take a few seconds before you cast judgement and ask what you can do to help, rather than  hinder, that person’s situation.

Art by Maria Zeldis

Art by Maria Zeldis

A little bit of kindness goes a long, long way but a little bit of understanding goes even further.

Art work by Kate Hannah

Art work by Kate Hannah

List originally compiled using the resources of the classic article “White Privilege: Unpacking the Invisible Knapsack” By Peggy McIntosh, and adapted by me to include and consider the ramifications of the taken for granted actions of those who do not experience any degree of neurological difference.

 

My Grandmother – The eternal gardener.

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When I think of my grandmother, I remember a woman who was very set in her ways, very regimented and extremely routine based.

gardnen 1A woman who rarely seemed to smile yet held a deep sense of commitment to family and an immense passion for growing flowers.

As an avid gardener, she could always be found, out in her field of flowers, and when I say always, I mean always, as in each and every day, come rain, hail or sun blistering heat so hot that it could give a person sun stroke.

Yet despite her love of being in the great outdoors, she rarely left the comfortable familiarity of her own land.

If anything had to be gathered in from the outside world, such as groceries, she’d write a list and send my grandfather out to fetch them.

As a child, I had assumed that everybody’s grandmother’s behaved in this way and that older women simply did not like having to be bothered with such tasks.

It is only now as an adult, that I am able to look back and wonder whether or not her actions were driven by a strong inner need for familiarity, routine and the desire to avoid non-essential social contact.

gardenerI’d love to have been mature enough to have asked her how she truly viewed and felt about her life before she passed away.

I can’t help wonder how such a conversation between the two of us may have gone and whether or not  we would have found our much-needed piece of common ground, upon which we could have stood together, while gazing out at all of her beloved flowers.

 

I am an Autism Parent

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I feel like a lone soldier lost on the battlefield of life.

No one hears my silent cries.

I have a great fear of death,

And an even greater fear of life.

1 constantly struggle to break through your steel armor,

And capture the spirit inside.

I live one second at a time,

Sometimes I think I’m invincible.

Yet as tough as I try to be,

Something always manages to touch my heart,

And keep it soft and vulnerable.

I have a solid steel faith in the future.

1 am physically stronger than anyone.

I carry the weight of the entire world on my shoulders.

I have mastered the art of suppressing my raging anger.

I hunger for any knowledge that is unavailable.

I have an overwhelming appreciation for the finer things in life;

Those things of highest quality:

A sunset,

A sunrise,

A dewdrop on a blade of grass,

A roaring thunderstorm,

A mud puddle,

Clouds,

And the touch of sand on bare feet.

I am the most isolated person on earth.

I am cast aside by my family and friends,

Yet admired and viewed reverently by them.

I am the most selfish and most self-sacrificing person alive.

I can laugh and know complete joy,

And simultaneously hold an ocean of tears.

I have grieved more than a nation:

I carry constant pain in my heart.

I know true happiness is loving unconditionally,

Loving and not being loved back,

A straight line,

A meal that stays on the table,

Dry feet,

Circles,

Eyes looking to me not through me,

A spoken word,

Any word,

A response to a single command,

A teardrop or silence.

I am often criticized and pitied.

I am not all that I can be or want to be.

1 keep searching the haunted castle of a beautiful mind.

I am alone;

I am the tiniest whisper in the thunderous echo of time.

I am the parent of an autistic child.

These amazingly honest and haunting words belong to Peggie and I thank her sincerely for allowing me to craft them into a poem.