“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 )
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
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
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
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
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