Thursday, December 3, 2009

Why Children with Autism dont talk ?

“Is he saying anything yet”?

This is the invariable question that we used to get from R’s grandparents every time they called.

R’s grandparents have a very simple view of Autism (especially my mum and dad) .

They think R is a quirky kid (my side of the family is full of people with borderline aspergers so the spectrum of what passes for normal is pretty wide).

They see him as an intelligent child who basically cannot speak.

This is true to an extent but its not fully true

Especially if you think of the corollary – which is that they believe that speech will come (automatically) and that R will not need anything else once speech comes

Of course we have spent a lot of time thinking of speech.

This spring, DH and I said it out for the first time.

 I was doing my usual picking up before going to bed and we were getting ready for his IEP meeting.

You see, I was starting to feel that speech would never come.

But I could not bear to say it out aloud

But that day I said “What If he never talks .. Have you ever thought that could happen?”

DH sighed and said “Well we need to look into augmentative devices “

I sagged with relief.

Just saying it out loud felt like a weight had lifted off my shoulder

Its best to take the bull by the horn in most things and certainly that is the case with Autism issues

Fall has come and my fear is slowly ebbing

Speech had many hurdles for R. There were lots of gates that had to open before speech could come.

While I am no expert in Autism – we did spend a lot of our waking hours working on speech and thinking about it

I know this was the biggest question in my head in the months just before Autism.

I am writing this all down in the hope that it may help someone else( its long and its kind of boring and most of the autie mum and dad readers of this blog know this already. Also I am sitting in a plane with plenty of time to pontificate  )

Gate One

Auties think in pictures not words.

Imagine thinking of everything – only by the thing itself and never by the way it sounds ( which is the spoken word )

Symbolism is a critical step that is missing for many Auties – If you think about it all words are symbols – so the way the word "coffee”sounds – is a symbol for coffee

I know in our case some rudimentary pretend play( which also uses symbols ) has come along with speech

They way to cross Gate one was of course to skip the sign and skip the word – but communicate mostly with the use of PECS ( Picture Exchange System)

While PECS are a symbol – they are a much more direct symbol than the spoken word

Gate Two

Lack of Joint attention and Social Engagement and Referencing

Due to a variety of reasons ( overwhelmed by all sensory overload or under-load ), auties are paying attention to other things in their environment - not just the people – the humming of the fan , its circular motion etc

NT babies on the other hand spend all their time focused on their caregivers

Watching the mouths of the people moving .

Watching for the sounds in the environment from these people.

NT babies are learning about language constantly from the minute they are born becaue they are programmed to do so.

Just try this on your drive home today - look out the side of your car to the car in the lane next to you.

Almost every time the driver will turn and look at you. ( if not you can diagnose autism right there on the spot - just kidding LOL)

Because Neurotypicals are constantly in a state of social referencing

Gate 3

Inability to imitate

Much of early learning is done through copying .

In fact a theory says that some Auties are missing mirror neurons.

(Mirror neurons help you feel the way somebody else if feeling even when they are doing an action that you are not doing – Example how our mouth waters when you see someone else digging into a tasty meal even though we are not eating l)

I remember a key moment when I noticed that R reacted a little differently – we were driving back from DC last Fall- my MIL and SIL were with un in our Minivan

My SIL yawned and of course the rest of us started yawning

The only one who did not was R

Gate 4

Understanding the purpose of communication

Many auties do not understand that they can ask for something in order to receive it

Even in their early days - many of them have not spend countless hours in the back and forth response with their caregiver

NT babies who spend a lot of their baby hours doing just this and understanding the reciprocity of human interaction – cause and effect

Give a smile to get a smile

The ways to open Gate 2 and 3 and 4 is of course one on one engagement with the caregiver – especially something like Floortime/Sonrise /RDI - to use what motivates them in order to create these buliding blocks of development

Gate 5

This is our special cross to bear – Apraxia .

Fortunately, not all Auties have this problem

This is where the person is unable to make their mouth move the way they want it too

Its proved to be one of the hardest challenges our child has to deal with

However - this gate too - is opening slooooooowly but surely

We are using the Nancy Kaufman principle of using word approximations.

Even making sentences where each word is an approximation – and now that I am noting and recording – I find that R has a fairly decent vocabulary (very behind for his age but much ahead of what I expected )

Gate 6 and so on

Many barriers still remain of course. There is so much practice in language and comprehension  that auties miss.

 Plus even while the building blocks of joint attention and engagement are being created - they need to be strengthened almost continuously.

Because the call of the rest-of-the-stuff their sensory system is seeking is loud and insistent!

R’s apraxia is brutal and even as we are overcoming it I am aware that there are countless hours of language practice that R has missed and is missing- as we speak

But we are definitely on our way

This really is such a long post

But maybe a parent with a newly diagnosed child will read this

And know that the road to language has many barriers but these barrier can be overcome

The way to overcoming them is to observe your child, identify the barriers and then systematically overcome them.

To never simply wait for a miracle to unfold.

This Spring we were afraid that R would never talk

But by Fall – in spite of the fact that all the odds were against R ever talking – I know he will

Now when his grandparents call

R uses the few words that he has – "Hai" he says in greeting and "Gud by" ( good bye ) he says in Farewell after listening to their doting adulation patiently

And each hard-earned word is music to our ears


Anonymous said...

Lovely post. You've touched on so many truths.

Quirky. I know there's more to it. But sometimes I like it. You can certainly get through life on quirky. Quirky is not incompatible with independent. I hope one day, like your relatives and all of us, to some degree, our girl can be just quirky.

Gate 1. It' hard to wrap our brains around this isn't it? So many concepts are abstract and seemingly impossible to visualize.

"Hai" he says in greeting and "Gud by" - This is precious. I'm sure you'll miss it one day when it is refined. May it be a beginning for much to come.

Anonymous said...

"Plus even while the building blocks of joint attention and engagement are being created - they need to be strengthened almost continuously." I'm finding this particularly true right now.

It's so much work and it seems like such a long process, but then when you hear "Hai" and "Gud-by", it's the best kind of promise.

Kris said...

I could really relate to the part about "saying it out loud" and the relief that brings. I remember when I first wondered if there was something "wrong" with A. I kept it to myself but the anxiety built and built. When I finally said OUT LOUD to my husband "A should be talking by now. He doesn't seem to understand things like he should" my husband responded with "yes. We should get him tested." And it went from worrying to taking control and DOING something. Like all the things you said about learning to talk/communicate.

Rachel said...

I find that you are stunningly intelligent when it comes to breaking down reasons and theories and possible solutions... but beyond that I really adore your intuition.

Your communication with R is so far beyond verbal... can you imaging how much better you know your child (and your child knows you) because of his non-verbal time? What a gift!

Forgive me if I offend, I don't mean to. I just really love how you express your thoughts.

robin said...

Love your informative and very interesting! I'm sure those words are definitely music to your ears...I know there are more on the way!

Laura said...

What a great post! A public service for parents of the newly diagnosed. And I'm always fascinated by the variation among auties. The apraxia is really interesting. I'm so glad for R you're a Floortime disciple. I've always found ABA a bit unfair for some, when you consider reward for speaking and a child who doesn't have the motor skills (or motor planning skills) to speak. That having been said, I'm speaking form ignorance in that I don't really know much about ABA, and I understand that not all ABAs are created equal ("good ABA" versus "bad ABA"), and I don't want to judge. I hope that was diplomatic enough!

danette said...

"And each hard-earned word is music to our ears"


What a great post, and very informative too.

We have dealt with (and continue to deal with) each of these gates. Thanks for pointing out that the work is ongoing... we don't always just open a gate, walk through, and leave it behind. Some of them are overcome over a long period of time, and some of them are ongoing challenges.

I think #4 was one of the hardest for me to get my head around... the concept that my children truly did not understand the purpose of communication (no wonder they didn't seem motivated to try, they didn't see the point and didn't understand the benefit that would come from it, something as simple as having your needs met much more quickly if you can communicate to someone what those needs are). So much of what just comes naturally to NT kids has to be painstakingly taught to our kids but as you know it is well worth the effort!

Queenbuv3 said...

My son, now 11, didn't speak his first word until he was 5. He developed echolalia. He is quite a chatter box, repeating whole scenes from movies (he started with a line from a movie). In the past year he started saying quotes that were appropriate to the situation and was trying to communicate with what he was saying. We just got him an ipod and bought an app to turn it into a communication device.

Many children with Autism go through the same developmental stages that NT children do just at a much slower pace. My son didn't start pointing at things until 5. Which is sooo useful when your child can't tell you what they want or need with words.

Don't lose hope. Your son will learn how to communicate in some way whether it's through speaking, signing, typing, voice output, etc. They say if a child with Autism is able to speak at 5 they have a good chance of finding some way to communicate. One thing that my son has taught me is that some things are definetly worth the wait.

Anonymous said...

Love your post. Felt like someone took time to document everything we are going through

Manju said...

And each hard-earned word is music to our ears - yes, it is music to our ears. Thanks, Kajoli..

Another random week in 2020

 Everything that I could say about 2020 has probably been said.  On the whole,  its not as bad as it could have been because I am with my tw...