About being non-verbal

About being non-verbal

A couple of Instagram comments on a recent post have led me to write this blog and hope I can provide some support. Henry has always been described as non-verbal, like many other autistic children and adults, by both us, his family, and the professionals. Indeed, at 2yrs old Henry stopped any pre-toddler 'Mamma', 'Dadda' babble and became completely non-verbal until he was 5yrs old. Henry is still described as non-verbal but, he can actually say words and speak. Huh?

Henry cannot communicate socially and will go to great lengths to avoid social communication, interaction or engagement of any kind. So whilst Henry has quite a large vocabulary now he is still unable to answer any question you ask, even with a simple 'yes' or 'no', and he cannot, for example, tell you what his name is if you ask nor answer how his day was at school.

You can imagine how well this goes down when we are out in public at the shops for instance and someone addresses him...they get nothing, think he is therefore rude, and I get a dirty look! Hurrah for Autism Threads t-shirts to give people a visual cue! Got to plug the ol' merchandise and all...! This does not, however, mean that Henry is not listening or understanding, far from it. 

We were fortunate enough to be able to send Henry to a specialist centre where we lived (in Singapore at the time) from the age of almost 3 for intensive speech and language therapy, occupational therapy, and physio 5 days a week 9am-3pm. It was basically early intervention and the best thing we ever did for Henry and for ourselves in terms being guided on how best to help and cope with our little boy.

On returning to the UK we continued with a private joint SLT and OT session once a fortnight where PECS was introduced to Henry and us. PECS is basically a form of communication using pictures.

We began with photos or exact pictures from magazines or the internet for things that we knew motivated Henry and met his needs i.e. food! We printed the pictures or photos, laminated them, cut them into equal square sizes and kept them visible in a bowl at first and then in an actual PECS binder.

We used a program called 'widgit online' that his school used so as to keep the images and symbols consistent, however, it is just as easy to print or even draw your own. It costs around GBP6.00 per month and you can upload your own photos and use to replace images for words which are quite handy and it's also great for planning trips and making whole templates to set expectations of where you are going and what is going to happen next. 

When Henry wanted something he used gestures aka hand pulling me towards the fridge or cupboard and me spending goodness knows how many frustrating minutes every time guessing what he wanted (often resulting in me lifting him up to each shelf).

From there we pretended to not understand what he wanted with his gestures and led him to the pictures first saying "I want...?" When Henry chose a picture we would say the word (he would say nothing). Eventually, he would bring us pictures of his own accord (totally thrilling for us) and eventually after that he would say the word after we prompted him with "I want...?". Gosh, the first time was such an incredible moment!

Now, Henry merrily prances around the house saying "I want 'xyz'" ALL the time, no pictures needed, and we are beginning to prompt him with a 'please' at the end even though that word means absolutely nothing to him. He has to live in our world after all.

The professionals out there won't like me much for this one but, the second best thing we ever did to encourage words with Henry was to introduce him to KidsYouTube on his ipad. This app speaks to Henry and gives him pleasure that no human ever will. There is zero social pressure or expectation and everything is on his terms.

For us fraught parents worried about online safety they have it covered with this App ie no adverts; a timer that will shut it down after the time limit you have set and can only be reconnected with a random pin code (new one generated each time), and you can set it to an age range eg "pre-school".

We used this one for ages with Henry as it is filled with fabulous colours and people pouring beads and bubbles and paint and feathers and all sorts, a total visual delight plus, so many alphabet songs and shapes etc. Henry knows them all now.

It's been fascinating to see what he enjoys watching and even with the cartoons, he has always tended to go for ones where no speech is used by the characters eg Tom & Jerry, Oggy & the Cockroaches, Pocoyo, The Oddbods etc.

We know that much of what he says from this App is echolalia ie copying/repeating things he has heard without grasping the meaning but, there has been so much that has been grasped and learned too.

And yes, the amount of time spent on it has to be monitored and there have been certain things that have really hyped him up but, the benefits have far outweighed the negatives (we even get that extra 20 mins at a table in the pub to finish our meal and oh, the way it has helped keep him calm during flights too). Yup, I'll say it...We love you KidsYouTube and thank you!

1 comment

  • Paul O’Dwyer

    I can vouch that this is exactly what we have experienced with our special Henry. After all the silence, the random words, all the support and care of the amazing SLT and OT specialists who’ve worked so gently with him, and the support of his siblings, I walk in the door in the evenings now to be greeted by his beaming smile and a “Hi Daddy !”. Melts me every time.

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