Thursday, September 10, 2009

Holiday re-run; Reality is shaped by our senses

Bratty enjoying some sensory time in the pool
Boo and a hose in the little splash pool in the back garden of the villa


Boo underwater - pretty much the whole time he is in the water, he is under it!



Bratty´s version of LaLa - July 2008

Another Holiday Re-run, from July 2008; Reality is Shaped by our Senses
My Year 10 English teacher once said "reality is shaped by the senses"
He wanted us to think about how our reality might differ from another, depending on our perception.

And here I am 25 years later, trying to understand it in relation to my kid's autism.

I am not a recent convert to this idea. My Boo's first good teacher tried to explain it to me a bit when we were going through the clothes and shoes stage.
Boo was very keen on wearing a pair of riding boots which were at least one size too small, and at the same time preferred to be naked from the minute he walked inside our flat.
He would wear clothes to go out, but we had issues with sleeve lengths and types of clothes.
This teacher - Minnie, explained that having autism could feel like having "pins and needles" all over your body, all the time. Or it could feel like you had been to the dentist and had a local anaesthetic which made you want to feel your lip all the time- except the numbness would be in your arms and legs or all over.
The tight shoes would make him feel his feet so he had an awareness of himself. Whereas taking his clothes off would make him feel at ease in his own skin.
It made toilet training very challenging.
I remember using builder's tape to hold Boo's nappy on him as we were renting and the houses were always carpet. I think I graduated to dungarees with a walking harness over the top, and the neck to knee swimming costumes with the zip at the back.

Oh dear, I feel bad about it now.

I've talked about this before. But I decided to do a whole post on it as I am reading an excellent book which describes it very clearly in an approachable way called Dasha's Journal which is written from the point of view of a family cat.

Now I hate cats. I am allergic and having grown up in a house full of cats that pooped everywhere, I didn't find the premise particularly appealing. But I am really enjoying the book.

Unlike many so called "autism professionals" Dasha the cat knows that people with autism see, hear, smell, feel and taste things differently, and it shapes their views of and interaction with; the world.

Judging them as intellectually impaired because they cannot pass a standard IQ test, is like saying blind people are rude because they ignore you when they enter a room or deaf people are ignorant because they don't listen!

It is hoped that most people would know to announce they are there when someone with a visual impairment approaches them; and to be sure to be face to face when speaking to someone who is hearing impaired.

So perhaps it is time we began to appreciate the sensory perceptions of auties; and reposition ourselves where necessary, to make life more comfortable for them.

To begin with I want to deal with the so-called Triad of Impairments.
According to the National Autistic Society website and many many autism "professionals" Autism may be diagnosed in someone if they have difficulties with Social Interaction, Language or non verbal communication and difficulties with Flexibility, creativity and imagination.

By that definition you would have to diagnose every tourist who ever visited Paris, France.*

Think about it. Imagine you wake up one day and find you are living in Paris.

You may have some french which you learned at school or from your skincare range (I speak fluent Clarins) but the minute you try to talk to anyone in this city they will seemingly set out to misunderstand you and make big Gallic shrugs or hand signals to imply your ignorance.
= Difficulty with Language

Being misunderstood or ignored and finding yourself treated like an idiot all the time is going to make it difficult to interact with others = Difficulty with Social Interaction

And not being able to ask anyone for help or understand directions will make you very nervous about getting around.
You will probably work out one way to get from A to B and stick to it, so you don't get lost = Difficulty with Flexibility

As for Creativity and Imagination? Who is going to be creative in those conditions? I think you will spend most of your time imagining what it will be like to get on the plane and go home where people can understand you.

That is how our kids feel. To judge them on those so called impairments is not only unfair; it is usually inaccurate as one or another of the three is contradicted by what you as a parent can observe.

In the early days, we will kid ourselves or indeed are kidded out of the diagnosis of autism when we have experienced love and affection from our children or "social interaction" with us. Or we have seen them role playing with toys, (imagination) or cunningly problem solving in order to overcome an obstacle (creativity).

We had that situation in the doctor's office with Boo.
Being told to leave it a bit longer, to give him a chance to start talking as he so clearly loved and connected with us; he couldn't possibly be autistic.
When we did get Boo into a school, they told us without hesitation that he was VERY autistic.
It was just the Paediatrician's criteria that was wrong.

So to judge our kids on that INFLEXIBLE criteria is pointless.

It is just as unfair to expect them to pass the standard IQ tests in those circumstances and judge their intellectual capacity on those results. I am reminded of the White Australia Policy of 1901 which was designed to limit non-white immigration.
The test required a person to write out a passage of fifty words dictated to them in any European language not necessarily English. When one guy passed in a number of languages they resorted to Scottish Gaelic to keep him out.

To really understand our kids we need to open our minds and try to sense the world their way.

Imagine now that I have dropped you in Southern Spain. (not so hard to imagine here, hee hee!)
Even with your very limited grasp of "Sesame Street" Spanish, you suddenly find that everyone is making an effort to understand you, however bad your accent or pronunciation.

You may have to resort to gestures or pointing but people TRY and to work our what you want and go get it.

Slowly you begin to feel more comfortable in the environment and branch out, learning a bit more of the language and customs which in turn helps you to fit in.

You might still feel more comfortable in "your own world".
At the end of the day you probably want to relax and read an English novel or watch B.B.C. News on cable, but the difference is you can choose to relate to people in Spanish, when you need to.

That is the place we want to take our kids to. Where we can appreciate what sensory distortion they have to overcome and make it easier for them to learn our ways; without being treated as fools.

Because we all have our own little sensory differences.

But for now. Buenas noches Mon Amigos. xx

1. Today's picture is by Bratty! Drawn freehand and independently on the 17th July 2008 at the age of 8 3/4.
She has never willingly drawn anything up to now, only scribbles or really aggressive coloring of worksheets. She has however been observing how things look as you can see by this perfect picture of LaLa, and her Ball.
Will I send it to the Guggenheim or Tate Modern?

*2.By this reference I do not wish to defame all French people. You can drive an hour outside the capital and find perfectly nice people who do not seem to be pissed off by your very existence.

16 comments:

Sister Wolf said...

I read somewhere recently that someone had developed an IQ test to more accurately measure an autistic person's IQ. It was fascinating...shit, I will have to google it.

When my kid was around 4 or 5, I was told that his IQ was 90. I laughed derisively. I told them they were idiots and stormed out.

It turned out that when they asked him questions he didn't like, he climbed under a table. When they asked him what kind of friend he would like, he answered "a chunk of celery!"

Later, at around 10, he tested off the charts, at graduate school level.

A parent is the best judge of their child's real intelligence and gifts, even if the system only judges him/her by their 'deficits.'

xoxo

Hammie said...

You bet ya!
And the non-verbal kids get a very raw deal. Bratty can google any of her favourite shows, then scroll down to choose the best. No mean feat when you happen to like OSWALD the Octopus. (Try it and you will see what I mean)
xx
(Tip: This Oswald was never in no book depository)

Sister Wolf said...

I just looked at Bratty's drawing....it is exactly the kind of creatures Charlie used to draw when he was little. It's uncanny how similar!!!! I have boxes of these cute little figures.

Eventually, they will become more like humans.

I think Bratty is deveopmentally 'behind' but about to start catching up. Yay!

Imelda Matt said...

so know you've got euro in your purse your suddenly part of Europe?

The Seeker said...

Great post dear.
Thank you for sharing with us this.

Indeed "our reality might differ from another, depending on our perception".

Also I tend to question the criteria that "label" people...

xoxox

Pearl said...

We spent many hours in my masters program discussing the criteria for diagnosing autism. I still don't understand the criteria, it seems like it described just about everyone. Everyone! And it seem like each line contradicted the one before it. Even the instructors couldn't explain it.

mammyvalentine said...

I knew that was LaLa and its a Tate Gallery for sure ;)

Brilliant perception and discription as usual Hammie.

Youngest Cramp Twin is a 'naturist'loves his own skin (so do I, ahem) he has issues with material, length, waist, zips....etc. (so do I)
We stick to trackies and cotton tee's.

I like Cats must read that book.

Mammy :)

Sesame said...

Wow Hammie
This is bloody amazing..how do you do it?..you really have surpassed yourself on this one..never mind the book have you ever thought about becoming a lecturer or psychologist? As for Bratty's excellent drawing of lala, she's like her ma..great attention to detail.

enc said...

I suggest that you do not choose one museum, but send the masterpiece to both. Let them get into a bidding war.

I have no idea if I've ever meet any autistic people in my life. I hope that if I do, I will be able to rise to the occasion. I appreciate this metaphor you use to describe what is going on. I would never have known any of this if not for you, H.

xx

Hammie said...

A belated thanks everyone. Bratty has been up to her old tricks so my concentration has been down a bit. Hopefully this too will pass.
Sis, the problem with you telling them they're idiots is that they all do that "ahhh, DENIAL" face behind your back. Your quote should be carved on a plaque and placed in every clinicians office "A parent is the best judge of their child's real intelligence and gifts, even if the system only judges him/her by their 'deficits.'

Pearl, I think the answer is in the story; the lecturers should be organising for students to go and visit schools and actually observe so called autistic behaviours and talk to parents who know. The variations are so wide, I think a lot of time is wasted trying to specifically label when "ASD" will do nicely. Then let the intervention begin.
Sesame, Mammy and Seeker and Enc: Thankyou. it means a lot to me that I managed to express myself in a way that is understood. And enc, I have no doubt that if you met someone with autism, you would be great! One of the many kind strangers that we happen to meet on the way through. An open mind is a gift.
xx

Jean said...

Hammie your insight into autism is breath taking..you really help me to inch closer to understanding the condition myself. I would love to climb into my son's head for one day to see what he sees and feel what he feels. Many thanks for a great post XXX

lisadom said...

Thanks Jeannie, glad i am able to put something together that makes sense to someone else xx

jazzygal said...

Fabulous post again Hammie. So descirtive..... anyone with no inkling of Autism would understand. In fact your posts are exactly what people with no idea of the condition should read (book, book...!!)Well, if Carrie can convert her "Sex and the City articles" into a book!!

I love the photos...oh, blue sky and blue pool. Sigh. And of course I love Bratty's pic! Clever little madam. xx Jazzy

temp agencies said...

Aw! It’s a very nice place to spend the holidays. Advance Happy holidays to everyone.

distance education said...

Thanks for sharing to us this awesome vacation sight.

Super Kawaii Mama said...

I love you plan about how to look good in bathers... just hang out with old and saggy people!Another Hammie pearl. :)