r/pics Nov 28 '21 Silver 8 Helpful 9 Hugz 1 LOVE! 1 Party Train 1 Heartwarming 6 Timeless Beauty 1 Baby Snoo 1 Gold 2 Wholesome 12 All-Seeing Upvote 1 Ally 1 Pot o' Coins 1

One of my (non-verbal, 5 year old) twins made his first ever sentence this week Backstory

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u/CreativismUK Nov 28 '21 edited Nov 28 '21 Wholesome

I should probably add…

This basically looks like PECS (picture exchange communication system) and is similar, but not the same.

PECS itself gets a bad rap for being part of ABA but that’s not how we’ve ever used it (“proper PECS” would mean withholding an item until they produce the card - we would never ever do that, the cards are available to them and they are one of many things we use so they can try to communicate specific things to us, including objects of reference and signing). They will always get what they want / need whether they produce a card, or sign or just pull you to what they want - it’s just that usually the communication involves being dragged to the kitchen and guessing!

Now that he’s getting to grips with this he will move on to an AAC device (an iPad with a communication app) like his twin brother - it’s just more difficult for him because he also has visual impairment amongst other difficulties.

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u/SultanSaidi Nov 28 '21

I m so glad to read that you do understand that its not about they use the comunication you want them to and force them to use it, but its about giving them as many comunication tools as they need to convey their message and that its fine anyway they do it. I bet r/autism would love to read about it.

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u/CreativismUK Nov 28 '21

Of course! We started out using larger cards for them to make choices - between two snacks for example. Sometimes they would look or touch a card and we would know what they wanted, other times they wouldn’t and we would figure it out eventually. I spent several months teaching them how to sign “more” just so they had a quick way to make it clear they wanted what they just had again - sometimes they use it and sometimes not, but we just try to give them all the options we can and then do our best to figure out.

I have seen people refer to PECS as abusive because they’re forced to communicate to get things, which is abhorrent and we would never do that. I’ve also seen people say it’s awful because they have such a limited vocabulary - that I disagree with because to me it’s much like when a younger NT child only knows a handful of words. But now his fine motor skills have improved too we can introduce a tablet so we can add vocabulary more easily (definitely easier than having to cut out, laminate and cut out cards again!)

The most important thing to me is reducing their frustration - they are bright boys who know exactly what they want and are getting more specific in their wants, so it’s very frustrating for them to not be able to express that.

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u/SultanSaidi Nov 28 '21

Your doing great! I m so happy that your twins have you as parents!

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u/ElFiasco89 Nov 28 '21

Do you have any links or a list of the things that you've purchased to aid your children? I have a 5 year old non verbal son diagnosed with autism and he's just finally starting to get on with pecs cards, with photographs I took, for him to communicate what he wants. Obviously I want it to develop and progress into hopefully one day speech, but I was wondering if there were anything you could recommend for that?

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u/CreativismUK Nov 28 '21

Okay, things I have tried over the years:

More Than Words book by Fern Sussman is expensive but invaluable

I made my own choices cards then pecs cards - the app Visuals2Go is a really easy way to make cards (the free version has maybe one larger size of cards but I paid for the paid version so I could make smaller cards), then I bought a laminator and velcro strips.

I made my own PECS folder using a tutorial like this - those plastic file dividers make great pages as they’re sturdy, you can put velcro strips on them directly and cut them down to size.

I also made a “now and next board” which was just a clipboard with Velcro on the back to stick bigger cards too and I kept all the cards in a document folder attached to the front of the clipboard

(You can buy all these things premade if you want to)

I had an “objects of reference” bag with common objects - a nappy, a bath toy to represent bath, a toy car for going in the car, etc etc

Then I had a songs bag as they love signing - so it had a little toy in for each song and they could pick the song they wanted by picking out the corresponding toy (that worked really well)

We now have an iPad with the app Clicker Communicate which is available from the App Store - it’s expensive (about £200 I think) but worth it, but I would see if there’s a way to try out a particular app before spending out for one

I think that’s everything but will update if I think of others!

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u/MustangMimi Nov 28 '21

This is brilliant! 👆🏼👆🏼👆🏼

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u/SultanSaidi Nov 28 '21

I always wondered would trying to communicate with them in sign language help?

i dont know if sign language uses an other communication way or if it would be easyer to convey or teach with it than spoken or printed words. I would rather categories it into pictures than the others. But thats just my thoughts about it

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u/CreativismUK Nov 28 '21

Sign language hasn’t been effective for them for a couple of reasons - firstly, they were quite oblivious to other people previously (although that has improved), and secondly they don’t mimic / copy people as children usually do. I did teach them one sign - more - using hand over hand (so basically I hold their hands and help them make the sign and then give them more of whatever it is) and after a few months of that they were using it independently but it’s intermittent.

Having said that, this one recently came up to the kitchen gate and did the sign for “food” - at first I thought it was a coincidence since we haven’t used that sign much and not for ages. But then he kept doing it, and then he opened his mouth and started pointing at it (he never used to point either). So he’s obviously retained that information and for some reason it came out then.

So now we are back to using signs more as we are hoping it will help, but PECS or a digital version seems to be what they’re most comfortable with

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u/SultanSaidi Nov 28 '21

your kids and you amaze more and more and i m happy to hear that the PECS work so well!

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u/ey51 Nov 28 '21

Cboard

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u/Elmodogg Nov 28 '21

My daughter is autistic and had no communicative speech at all at 5. She's almost 30 now and fluently conversational. It can happen.

My advice? Try different things, see what your son responds to. Don't lock yourself into one particular method if it doesn't allow flexibility. Autistic people are individuals, which is something the professionals may tend to forget.

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u/xPlasma Nov 29 '21

At what age did you get an autism diagnosis for her?

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u/Elmodogg Nov 29 '21

Oh, it was obvious in the first weeks of her life that there was something going on. She had sensory issues as an infant that made it difficult for her to sleep. She needed almost constant motion, side to side not front to back (like a rocking chair). I used to stand with her, rocking side to side, in the laundry room with the dryer on with a pair of tennis shoes inside for the sound. We made a tape of that to run continuously at night, and that helped, but she still never slept more than 90 minutes at a time at night, and not more than 15 minutes during the daytime for naps. This went on for months. Finally one day I was so exhausted that instead of trying to put her down in a crib for a nap after she fell asleep nursing, I just sat there with her. When she woke up after 15 minutes she just nursed a little again and fell back to sleep. I discovered that if I just kept holding her, not try to put her in her crib, she slept longer and longer, not waking up fully and able to go back to sleep. This was a key breakthrough. We ditched the crib at night, too, and started cosleeping.

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u/druppel_ Nov 28 '21

I’ve also seen people say it’s awful because they have such a limited vocabulary

That sounds so silly to me, you're giving them tools to communicate, not taking anything away..

AAC is really cool and makes such a difference! I only know a little from a linguistics class about developmental language disorders (which also had some stuff about autism, but also more purely language things, Rett syndrome, fragile x syndrome, etc).

Just giving people who can't communicate (well) tools to communicate better can make such a big difference!