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Original poster

can you tell me about your autistic non verbal kids

37 replies

bryceQ · 30/05/2023 20:55

My son is 4.5, completely non verbal with no pointing etc. He communicates by bringing us over to something. We are trying aac but no interest yet. I vocalise his requests of me. Take all the feedback from speech and language but I know it's just a case of being patient.

Could anyone share experiences of late talkers? How did it happen? Do you think you could have done anything differently?

OP posts:
Original poster
bryceQ · 30/05/2023 21:23

Anyone there? 🙏

OP posts:
Cadburysucks · 30/05/2023 21:33

You could try writing a sentence, can I have an apple on some card, if he can read, write a few other things, like can I have some water etc. This is how I got one of mine to start talking. Good luck.

Mynameisntrelevant1 · 30/05/2023 21:33

Not my dc but I'm a SEND teacher. I'd he's communicating by moving you to object that's a great start! Have a look at PECS if you haven't already or do your own version with eurher symbols or photos. So print photos or him doing things he likes and then get him to choose, say the short word- bike/ play etc. Try makaton sign language too- so sign more (google ut-or singing hands) then say 'mmmm' and see if he can cooy etc.

Interested in this thread?

Then you might like threads about this subject:

4 year olds
Putdownthecake · 30/05/2023 21:33

Following as exactly the same boat.my son hand leads. Very rarely points. He will bring his shoes to go out. He's trying pecs but not much use yet. We dobasic sign that he's not picked up. He is vocal loudest kid I know but not verbal. He did have a few words; mum, dad, nan, ball, all gone, but they seemed to disappear after 14 months. He understands some language but not much.

Original poster
bryceQ · 30/05/2023 21:34

No he's nowhere near this level. We aren't sure if he has a learning difficulty too but he presents with very high care needs. He will go to specialist school

OP posts:
Icedcoffeeday · 30/05/2023 21:36

Hi @bryceQ just bumping for you.
I don’t have any helpful advise sorry, my son is 4 and autistic however he is verbal, although not as the same level as his peers, he was completed non-verbal until just over the age of 3, and communicated by hand leading. I think he just did it in his own time, I can’t say anything in particular we did brought on his speech as he mainly speaks with echolalia, and has learnt phrases from copying TV and is.
Have you tried the SN Children board, they usually have some great advise.

Original poster
bryceQ · 30/05/2023 21:36

Mynameisntrelevant1 · 30/05/2023 21:33

Not my dc but I'm a SEND teacher. I'd he's communicating by moving you to object that's a great start! Have a look at PECS if you haven't already or do your own version with eurher symbols or photos. So print photos or him doing things he likes and then get him to choose, say the short word- bike/ play etc. Try makaton sign language too- so sign more (google ut-or singing hands) then say 'mmmm' and see if he can cooy etc.

Thank you. He just won't respond when we try this. He is an absolute whizz on ipad and is very technical with what he can do choosing movies. But he can't make preferential choices using images outside this. We have been doing all of these things since he was diagnosed at 2. He mostly still uses objects of reference rather than pictures, eg his bottle signified bedtime, towel bath time etc

OP posts:
Ted0301 · 30/05/2023 21:38

My little girl has just gone 5 she was diagnosed with autism just before she was 4, she’s non verbal but literally in the last few weeks started to say nanna and in recent days using it in correct context. It’s only 1 word but it’s such a relief to hear her little voice. We have tried PECs but she never took to it, she has a communication book but again doesn’t seem interested, we just talk/describe lots of things, anything with writing, signs, magazines, books etc.

Original poster
bryceQ · 30/05/2023 21:39

@Ted0301
Oh wow you must have cried!

OP posts:
Original poster
bryceQ · 30/05/2023 21:40

Icedcoffeeday · 30/05/2023 21:36

Hi @bryceQ just bumping for you.
I don’t have any helpful advise sorry, my son is 4 and autistic however he is verbal, although not as the same level as his peers, he was completed non-verbal until just over the age of 3, and communicated by hand leading. I think he just did it in his own time, I can’t say anything in particular we did brought on his speech as he mainly speaks with echolalia, and has learnt phrases from copying TV and is.
Have you tried the SN Children board, they usually have some great advise.

Thank you, I suspect that's the case that we are doing what we can and it will just happen if it wants to happen... Such a lesson in patience!

OP posts:
narwhalsarereal · 30/05/2023 21:43

I would echo a previous poster, persist with the pecs.

Find something he is motivated by, eg a favourite food.
Have that image there and the other parent takes his hand, places it on the pec and then guides him to pass it to you.
Once it's in your hand then he receives that food item. If needed, break the food item up so it's a small piece at a time.
Repeat it as often as possible, eventually the goal being he independently passes it to you.
It takes time, it's incredibly frustrating at times but he'll get there.

Also, just constantly verbalise for him, just simple 1 word like drink, apple, teddy etc as you do things, even when picking up food in the supermarket.
The more you expose him to language, the more chance he'll pick it up.

I work in a SEN school and one of my class, who is 9, has just started to use single words.
It's taken time for us and parents but he is making progress all of a sudden.

Lovemusic33 · 30/05/2023 21:46

My daughters now 17, she was totally non verbal until just before her 4th birthday, using PEC’s and music therapy helped her speak her first words but her vocabulary remained very small all the way through primary school. She was however able to read and write. Her communication improved through high school (specialist school) but she still struggles to communicate her needs, she won’t ask for help, can’t tell me if she’s unwell or in pain and struggles with emotions, this can cause meltdowns where she harms herself.

When she was younger we used her interests to encourage speech, at the time it was CBeebies characters and food, her first real word was ‘cake’ 🤣. She worked with a music therapist for a while at nursery and music really helped, she started singing. A lot of her early speech was just echoing the tv or songs.

toomanybooksnotenoughtime · 30/05/2023 21:53

PECs seems like the way to go. It can be a battle at the beginning but when the penny drops it really drops.
Echo what previous poster has said about finding a highly motivating object and having a taught session once a day. There are videos on YouTube to demonstrate this.

It will take two people.

Keep practicing with this one preferred object or activity before you try and extend it.

Do you have a Speech and Language therapist?

Original poster
bryceQ · 30/05/2023 21:53

I think he is a gestalt language processor so I follow the SLT therapists who work on that so we repeat short scripts frequently.

OP posts:
Original poster
bryceQ · 30/05/2023 21:55

The NHS support is minimal, I've never had a single session where they propose anything different to what I'm already doing.

I'm fine with using images but some pecs veers into aba type sessions which I wouldn't do.

OP posts:
toomanybooksnotenoughtime · 30/05/2023 22:00

PECs can seem very much like aba in the early phases but when it is embedded and really up and running it is very different

Has anyone spoken to you about Intensive Interaction?

Original poster
bryceQ · 30/05/2023 22:01

Yes he was diagnosed at 2, we've had 2.5 years of "professional input" including intensive interaction.

OP posts:
Doughnut87 · 30/05/2023 22:03

DS was totally non verbal until nearly 10. We had tried lots of different communication methods which he never took to. We eventually started using proloquo2go on iPad around 8. With a lot of modelling and encouragement he eventually started to make single word requests then moved onto simple sentences. After 18 months he randomly came to me one day and pressed 'mummy' on his iPad and then verbally copied it. I'd never heard his verbal voice before. He's 13 now and in the last 6 months has just started putting simple verbal sentences together using 'i want' and then the item. He probably has around 80 or so verbal words now. He can also use his communication aid to make more complex requests but is also using far more complex language as well as commenting.

My biggest regret was listening to salt when they told me he wouldn't be able to grasp proloquo2go, they wouldn't fund a device for him. Eventually we did it ourselves but I hugely regret not doing this sooner for him.

Original poster
bryceQ · 30/05/2023 22:04

I wouldn't do hand over which is illustrated in that video. My son has the right to consent with his own body. I just wouldn't use these techniques, many autistic adults speak out about these type of therapies.

But thank you. I was really just looking to hear from people's own experiences with their children.

OP posts:
Original poster
bryceQ · 30/05/2023 22:05

@Doughnut87 that's amazing, wow!

We have proloquo, we bought it for Christmas. I'll keep modelling it!

OP posts:
Doughnut87 · 30/05/2023 22:08

Good luck! We found it worked much better if we used a separate modelling device so that ds always had constant access to his device but could also copy our modelling if he wished to. We had far more success this was as he was copying our navigation and picked things up far quicker.

Original poster
bryceQ · 30/05/2023 22:09

@Doughnut87
Thank you. Yes we have a seperate device that's only for aac.

Did you start with a simplified screen of their favourite things? At the moment I'm modelling breakfast time for example and we go nursery.

OP posts:
toomanybooksnotenoughtime · 30/05/2023 22:10

Hope you find what works for you Smile

cestlavielife · 30/05/2023 22:15

When he leads to somethung
stop
get out proloquo
Use it to request
There is. Lot of behaviour approach to aac
From caregivers and teachers taking time to model and insist "tell me on your ipad" .
Learning that it is used to communicate.insisting use your ipad even when you know what they want.
Adult ds uses grid for iplayer.

Types comments requests at his level. Complex asd and sld .
Dynamic aac he made much more progress than pecs.
(Lots of annoying professsionals who said he would not be able to etc, some great including ABa,approach helped to instil aac use.