Non verbal experiences

[doadeer]

Hello,

I'm hoping to hear from anyone with a non verbal autistic child, how did their communication develop? What stages were there? And did verbal language ever come?

My son is nearly 3, he has just started taking our hand to take us where he wants but communication very limited. I'm doing some basic makaton signs to encourage his comprehension.

Just wondering what the future holds for us... The unknown of it all is such a challenge, and knowing how best to support him.

My ASD son was non verbal until shortly after his 3rd birthday. The first words he said regularly we're all p sounds, pepper, poo etc. We did sing and sign as a baby class so he was always able to communicate by signing which made a massive difference to us. Health visitor wasn't concerned because he could communicate however when he started pre school they referred him to speech therapy. It's an absolute cliché but once he was able to talk he never stopped, it's like making up for lost time.

F

Google pecs cards for autism.

This will be a good way of communication and used in special needs schools. Will be easier than sign language.

DS as a baby would say 'hiya', 'mamma' and 'dadda'. That randomly stopped one day. We didn't hear his voice again till he was 9 and a half years old.

He didn't understand on a 1 word level till 5-6, this is when he began to respond to his own name. We tried pecs and makaton very early on with little success. We tried pecs again many times, he had little interest. He would mostly take me to objects that he wanted and get very frustrated when he couldn't get his needs across often head banging and screaming for hours.

The main turning point for us was when we trialed a high tech aac device. Salt said he wouldn't be able to learn how to use it because he couldn't master pecs (salt don't have a crystal ball and I take things like this with a pinch of salt). Quite quickly he seemed very engaged by it and would explore different words. This very much led to his receptive language improving greatly. By age 8 he was using the device for simple requests and the screaming had stopped as he was able to get what he needed.

School where not remotely on board with his device usage. They didn't use it in school. DS was making good progress making quite complex sentences but school where holding him back and refusing to help. He would make huge progress during the holidays and then go back to school where the device wasn't being used. We removed him from school and used his device to model communication for him 24/7 as well as using intensive interaction, within 2 months he said his first verbal words.

He's 12 now. His primary communication method is still his device and he is able to use it very functionally to communicate. His receptive language isn't perfect but it's mostly good with the help of visual aids. He has some verbal communication which has made a massive difference for him. 50 words perhaps, not a lot to most people but they have made life so much easier! Interestingly the words he has have all been learnt via his device first. For example we taught him how to ask us to 'come here' and 'go away' via his device. He finds both of these very useful and over time they have become verbal. His therapist thinks it's because his device is very structured and he is always hearing the words the same way over and over again.

He's a more extreme case, each child is so different. What works for one won't necessarily work for another.

Thank you that's so helpful to read. I have looked at AAC but it's so expensive that I think I'll try with makaton first.

When your little one was non verbal, did they make a range of noises?

Greenjewel that makes me so angry for you and ds that the school weren't supporting you. Brilliant that he picked it up so well.

My ds lost all language at 2.5 and regained some basic single words at about 4. I would now call him mainly verbal at 8 but nowhere near how a typical 8 year old would speak.

We found Makaton really helpful with ds. There's an app you can get called My ChoicePad Pro. It's all based on Makaton and which works a bit like aac, in that you can press images and it will sound out the words. It also has a feature where you can build sentences. It's subscription but (it use to be about £50 for the year) but I found it was worth it.

My ds was pretty much non verbal until about 3. By 5 he had quite a few words and short sentences although couldn’t respond to questions like “what did you do at school today” or “how did you fall and hurt yourself”

He’s 13 now and as verbal as they come with all the added attitude of a teenager! That’s not to say there haven’t been plenty of bumps a long the way but I do sometimes forget just how behind he was in his speech.

We found a private SALT who specialised in autism and paid for weekly sessions for 3 years. There was pretty much no provision offered through school or NHS.

Seeing your son head bang must have been very troubling for you 😢

Doadeer - yes he did and still does. He uses a variety of noises, we know which ones are happy, agitated and just your general stims which often change.

Livpotter - luckily he's at a fantastic school now who couldn't be more supportive if they tried. That app sounds really good!

So glad to hear that greenjewel!

Ds was also a big headbanger when he was younger, thankfully not so much now.

My son would lead us everywhere too. Take each day as it comes. Here were /are our stages

2.5-3.5 saying words but not consistently
3.5-4.5 more consistently but we realised he has apraxiabecause his pronunciation was not right. The more words we introduce the more confused he would get and not be able to prounounce.
So we targetting the apraxia
We are at 5 now and his pronounciation is getting better. All this time his functional use of the words is getting better too.

Please please lookout for apraxia. Check if he can make all the sounds in the alphabet. Work with an o.t surrounding his mouth if he cant pronounce certain letters. We used to use aba to get him to say the sounds in the alphabet until he got good at it. We then went onto using each sound differently. E.g: a i o u e, ba bi bo bu be, ca ci co cu ce.....
And now we are working towards full words and some sentences. The future is not bleak at all. Just understand its in chunks. And these chunks are easy for typical kids. With asd kids they need unlocking. And a very observant parent! You will see his weaknesses as they come and work on them im sure.

All the best!

Thank you! That's so helpful

He makes a good range of sounds but there's no attempt to form words or use his mouth to communicate.

Its the uncertainty of it all that's so hard I find!!

I know its easier said then done. But take it from me, i am 2 years ahead of you in the journey. There is so much more therapies and understanding today than ever before. And understand each child no matter how late....will get there in his own time. So if he talks at 5. Ok. Thats fine. Longer than usual but thats how long he needed. And thats honestly fine. In the meantime get to work on all the therapies he needs and focus on that and dont think about the future. Think about the now. And while your there enjoy him! Please enjoy him. He sounds so cute by the fact he leads you to wht he wants. My son had that and its the cutest thing. Hes finding other ways to help himself for now.

Yes you're right, he is gorgeous, such a joyful character ❤️

@greenjewel Could I ask what AAC device your son used/uses? Our son is 12yo and still non-verbal, making little headway with PECs. I'm into trying anything and everything with him ...

[quote JenniferAllisonPhillipaSue]@greenjewel Could I ask what AAC device your son used/uses? Our son is 12yo and still non-verbal, making little headway with PECs. I'm into trying anything and everything with him ...[/quote]
He uses an iPad and Proloquo2go. There's tons of other options available though. If it's something you're interested in the ace centre (aac) can advise and set up device trials if you meet certain criteria. We decided to self fund as we had more control. October is aac awareness month so almost all major apps are 50% off for a certain period.

Sorry I think they've already been on sale. I thought we where earlier on in the month than we are!

Thanks! He's already got an iPad (thank you Cerebra a few years ago). Did you have any difficulties with getting your son to focus on the iPad, to make that connection between screen and real life?

(Apologies to OP for hijacking thread!)

@JenniferAllisonPhillipaSue

Thanks! He's already got an iPad (thank you Cerebra a few years ago). Did you have any difficulties with getting your son to focus on the iPad, to make that connection between screen and real life?

(Apologies to OP for hijacking thread!)

Initially yes but that's normal, once he saw it was useful and he could get what he wanted he was happy to engage. You can customise the program, add symbols and your own photos. Modelling how to use the device is the most important thing, we use it ourselves to show him basically. It's a huge commitment which is totally normal for us now. It's taken us years but ds can make sentences using individual symbols. Start small and build as you go was the best advice I was given.

Don't be silly! Happy for this to be a sharing thread for any concerns / advice.

Hijack away 🙏

My child is non verbal well classed as pre verbral now, she is 4 and half, she says random words all time but not much meaning, she is early requester stage, the book "more than words" super expensive but really handy explains what u can do to help support communication and launage development. She will take my hand to where she wants to go and will say odd word and we have to guess what it means. Will say apple bye bye if upset about something like she wants to leave.

@Newrunner29 does she go to a mainstream school?

No she goes to speical school started in September i forgot to add she has a learning disability which may or may not hider her language development

Also hijacking at what age can a child realistically use an iPad for communication?
Very interesting to hear some of these responses. I also have a non verbal toddler. Suspected apraxia, I am so worried about it

The future is not bleak at all. Just understand its in chunks. And these chunks are easy for typical kids. With asd kids they need unlocking. And a very observant parent!

Love this.