What is Autism? from my point of view.....

I am not a psychologist or behavioural specialist or a Psychiatrist.

(I'm not Elmo either but he is here for a reason)

So, I am not going to talk about the triad of impairments or assessment scales etc etc.

What I can tell you is that Autism is a sensory disability in which everything a person sees, hears, feels, tastes and smells is distorted.

They may see every strand of hair on your head individually with more detail than a dandruff commercial, hence the need to push your hair off your face.

They may taste food in individual components that make the slightest change to the recipe seem like an entirely different food.

Touch can be too light to feel or too intense to bear, or both!

And sound most unfortunately can be very distorted, either because they hear everything and cannot tune in to what’s important, ie. your voice, or because they only hear the higher sounds or the lower sounds that are in their environment.

There are a myriad of variations on these “Unders and Overs” and no two children are alike. (Believe me I have a sample of two!)

So, imagine if you like, that having autism is a bit like being in a very busy foreign capital city where you don’t speak the language and everyone is too busy to give you directions.

You can’t read the street signs and you cannot understand what people are saying to you, or even pick up on any kind of pattern in the words they are using, as everyone talks too fast.

The traffic is loud, it is really hot and you want a drink; but you don’t know how to ask for it and nobody can understand you.

Eventually you are going to recognise which shops are likely to have drinks for sale, but you will probably going to feel more comfortable going into a place where you can get it yourself.

When I travel to places where I don't speak the language, I quickly learn the written word for supermarket (Alimentari, Supermarche, Supermercado)

And the sign or word for Bathroom:

However, it takes me a long time to pick up on what people are saying as they speak their own language so fluently with an accent, that can make no sense to my untrained ear.

So I go where I can get things for myself

until someone has the time and patience to teach me "Please may I have THAT thing - Thankyou!"

That is how our kids feel.

That is why it can be really hard for our kids to say their first words, but really easy for them to type "Elmo" into a search engine on the computer!

And why when they need something, they lead you by the hand to get it, or climb on things to get it themselves, rather than asking you for it.

And they are often not going to see the point of learning to imitate you speaking.

(my in laws have been going to Spain for about 30 years and have NEVER spoken Spanish once)

You See: When a child with autism looks at you out of the crib, they are being bombarded by such a range of sights, sounds and sensations that they are not going to pick up on your reactions.

They may appear to have picked up a few words, which they use randomly, but will not necessarily; notice your reaction to the words.

A typically developing child will realise that you react and praise the first time they chance on a sound like "mamama", and do it again. The child with autism may be distracted by the fantastic prism the light is making through the window, or the pins and needles sensation they get whenever you lift the quilt off, or the sound of the leaf blower down the road which you cannot even hear.

Anyone who has tried to carry on a conversation in a busy room, with several people at the same table, with perhaps a band playing or some kind of noisy sport playing on a widescreen above them, can imagine how difficult it is to focus and pick up on what is being said.

Then multiply that and add fear and anxiety caused by not knowing how long you are going to be there, and where you might be expected to go next.

Now imagine that the people you are trying to listen to have started using signs or subtitles, a visual cue that you can follow while learning the sounds. The t.v is turned down or off. The band have gone for their break, and the loud mouthed guy roaring at the football has gone home.

Slowly you will begin to pick up on a pattern to the language, and equate certain sounds with getting your needs met. You can repeat these sounds: "Coke!" or "Beer!" and someone will bring you a refreshing drink.

"Pizza" and "Chips" get you something nice to eat. Suddenly you are finding this talking thing a bit more rewarding, worth repeating.

That is how we must breakdown the skills our kids need in order to communicate, so they can learn.

But they don't all like Beer and Chips.

Some of them want the t.v turned back on; to Thomas the Tank Engine or Peppa Pig.

Some of them will want to listen to the band again, and some of them will be more interested in sorting through or tearing up the coasters.

The point is that it will take intensive analysis to understand what is important to each one, and how to use that to get them to learn all of the skills they need to participate in the world, as independently as possible, on their own terms.

I myself would be delighted if my local pub gave up showing Football, and instead put on a little Charlie and Lola or Arthur, but I suspect the other patrons might object.

However, you could probably come up with another reward to get me to participate in the social engagement, 

Originally posted by Lisa Domican to Irish Autism Action Blogspot - on December 8th. All text is copyright.


K.Line said…
Genius guide - as always. And seriously, I have some autistic tendencies (noise and touch sensitivity, the need for food to be prepared precisely - I hate deviation in taste or texture).
Make Do Style said…
I was shopping in Waitrose in Kingston upon Thames a few weeks ago and a boy talked really loudly about the petit garcon. When we came to queue behind him and his mum, he talked a lot and about things he liked with no interaction and proceeded to suggest that the till lady could be Nanny McPhee for Halloween (he was pretty spot on!) His mum was lovely and then she had to mention to me that he was autistic and I said I knew and I really liked him. And the lady on the till said he was lovely and we talked with him (but he didn't really engage) he just talked at us and his vocab was amazing but it was a constant stream.

I think his mother who was very beautiful and lovely and seemed incredibly calm and happy was even happier when not one but two people were completely unfazed, accepting and chat about it all quite happily with her - I don't think I could have done this without you - as (I hope) I was neither patronising or over compensatory!

Mind you the woman on the till then shared her birth stories - her healthy born boys and 4 still born girls. I was quite stunned but also felt this sense of live and people. Incredible really that this all happened at the till in Waitrose.

I love your point of view it is most informative, helpful and great to read xx
Nan P. said…
Woa Factor, once again.

I agree, essential reading. It makes it all so much easier to start to get an idea.
Anonymous said…
Great description and much better than my four letter version. 8D
Lora said…
Great description and helpful reading to anyone who has no idea what it is like to be autistic. It's as though you have autism yourself by the way you describe it!
jazzygal said…
Just as wonderful now as the first time around!

xx jazzy
Lisamaree said…
K-Line: that's probably why I love you! I might also add perfectionism when it comes to coat construction.. but I mean that with love too. xx

Kate: I'm delighted to hear that one more mum with a little Autie felt some acceptance in the world. Mr Hammie has had to teach me not to say things about Cashiers who look like Nanny McPhee. The instinct is always there.... xx

Candi: thanks. xx

Nan P: Acceptance of Diversity is about so much more than ramps and access hey?

Yarlags: thankyou. xx

Lora: I reckon I do. There are a lot of things I can empathise with and imagine. If that isn't ironic enough...

Jazz: thanks. Recently gave my first "workshop" and felt it was worth a re-run.

Truf said…
... and of course the way we perceive the world is relative - as any dog or bee can tell you. People whose sensory input is different are a minority, so it must be "wrong" instead of just different. And of course they won't function well in a world arranged by and for their neurotypical contemporaries. Certainly not in a world that (still) does not tolerate being different.
Casdok said…
Turning off football in pubs! Now theres a thought :)
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Charlote said…
This is such a great description of autism. I have autism and this hits the nail on the head. I have learned to deal with my autism with techniques I found at http://onlineceucredit.com/edu/social-work-ceus-pcs. I hope this is helpful!
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