To ask what life looks like with a non-verbal child / children?

[SinkGirl]

I have twin boys who are 2 - one diagnosed with multiple things including ASD and a visual impairment, one who’s about to diagnosed with ASD. They present very differently but the thing they have in common is that they can’t talk and don’t seem to understand much language at all either.

SALT have told me that it’s possible they’ll never be able to talk. This is one of my biggest fears to be honest, over and above everything else we are dealing with.

I can’t get my head round what life would be like with an older child / adult children who are non-verbal. I would appreciate any insight into this from people who have been there are honestly I’m really scared.

I’m sorry you’re going through this op, it’s not what any parent would choose for their child. The unknown is always scary and at this point it’s still very much an unknown. I have cared for many children on the spectrum, some who have talked to various degrees and some who haven’t. The most important thing above everything is communication. A child who can communicate on any level will find things easier than one who can’t, that doesn’t have to be speech. It can be PECS, signing, lightwriter style devices etc. There is also a lot of potential for later learning than people think. One little boy I worked with started talking when he was 8 and he talks so much now! So just because your little boys haven’t started at the usual time, doesn’t mean they won’t years down the line. They will always be your boys and you will always be their Mummy. They will astonish you with their abilities at times, take it one small step at a time.

Honestly? It just becomes your normal. I have two with asd. One with extremely disordered language who started talking at 8. The other a very anxious young man, with a wide vocabulary but significant processing difficulties, who has become mute as a teen.

It's frustrating, particularly when having to deal with Other People, but we just get on with it. We have no choice, really.

Thanks - I just can’t imagine them never talking but I need to prepare myself for it I guess. One of them is really smart, already starting with PECS but it’s like he just doesn’t understand that words exist.

That’s great that he’s already starting with PECS! I worked with a little boy who was diagnosed at just 2, completely non verbal. We started with PECS and SALT and ABA and by 3 he had a few words. He went to start at a mainstream school (with support) at 4. Have you looked into ABA at all?

Don’t know much about ABA yet although I’m working from a book which uses some of the principles I think.

Earlier on, we were blowing bubbles and each time I stopped he was going over and picking up the card and bringing it to me. It’s just finding thinhs that he’s motivated about - so far just bubbles, food and drink, although I’m sure if I had a card for the iPad that would be all I would get, he loves early maths apps but I know screens aren’t great so I’m torn there! He can’t talk at all, only ga, but his brother is babbling a lot.

His brother is much further behind - it’s him who was at SALT this morning, the other is starting SALT in a few weeks, both are having portage now although ones a few months ahead with that. I’m so worn out with it all.

They have plenty of time on their side..and doing PECS already is great!!!
My youngest has autism... didn't speak til 5 but now never shuts up ..on his topics of obsession at least.
And I work in special school and have seen some..not all..children make amazing leaps from nonverbal to very functional. You really can't tell early on who will develop language and who won't but if they can start with PECS now the chances are so much better :) (and they drop PECS naturally as and when speech develops)

I work in an ABA school with a real mixture of verbal and non-verbal pupils, all with ASD. In my class of 5 I have 1 using Proloquo2Go (a communication app on her iPad) and Makaton, 1 using a mixture of speech sounds, PECS and Makaton, and 3 speakers (but limited speech, not completely fluent speakers). For the most part they are all able to communicate and get their needs across (one is struggling at the moment, but he’ll get there). Proloquo is fantastic, and my pupil is amazing at it. She uses it to ask for things she wants, and is learning to comment on things around her. She also uses it to give “spoken” responses to her work at school.

It’s great that they’re both getting SALT input early. I second looking into ABA. I see the amazing things that ABA can do.

Hi SinkGirl - my 8-year-old son is (so far) non-verbal, and, like others have said, it becomes your new normal. My son started with a SALT at the age of 2.5 with PECS and it was not right for him - mostly because he did not have the pre-requisite skill of matching. It took setting up a home-based ABA program with an amazing consultant to identify the issue and begin the process of teaching matching (3D to 3D identical, then 2D to 2D identical, then 3D to 2D photos and finally some 3D to 2D symbols for PECS). In the meantime, we worked on signing, which he seemed to prefer and are now getting him working with an augmented communication device (Proloquo 2Go on an iPad). My experience is that you might need to try a variety of approaches in order to find a communications system that works for your child - my son's profile is what the professionals term "spiky", meaning that he has advanced skills in some areas and real struggles in others so a linear approach did not work for him - professionals with experience and creativity in problem-solving to help work with his strengths and address or work around his challenges has been key.
I will also say that I have found that my parenting journey is just so, so different from parents with neurotypical children that I really struggled with feeling isolated and went through a very difficult bout of depression when DS was 4ish. I think when he was diagnosed, I went into "problem-solving mode, did a bunch of research, lined up my professional team and thought, "right, we will just get him talking and life will go back to "normal" and he will have the kind of childhood I envisioned for him". But, of course, that is not how it works - DS is not a puzzle to "solve" - he is his own amazing self and letting go of how I thought things "should" be in order to embrace what is has been key. Also, since DS started school (he was 6 when he transitioned from a full-time home-based ABA program to school, I have connected with other parents who have much more similar parenting journeys and that has been a game changer for me - support, ideas, connection and just being able to talk with people who understand. I am not sure where you are based (I am in London) but if you would like to chat, PM me. Sending you encouragement and hope - it sounds like you are an amazing Mum doing an incredible job for your boys xx

Thank you so much. How did you access ABA - by paying privately? I’m in Dorset and I can’t find anything. There is a school for ASD children about half an hour from us that takes children from 3 but I feel we are a way off from that. We don’t have much money so I’m unsure how we’d fund anything extensive.

Twin 1 is ridiculously good at matching (whole decks of number and picture cards etc) so I guess that’s why he’s getting on well with that. Neither of them will mimic anything at all so signing is out for now although I’m still trying. Even after months of portage I have no idea how to get twin 2 to engage - he is so focussed on sensory seeking he doesn’t play or anything. We are seeing fleeting moments where he will interact with a toy or object but they are scarce. I’m shitting myself to be honest - I just have no idea how things are going to go and it all feels so insurmountable having two of them with such different needs.

Ds2, the late talker, was like your twin 2. It took months to find something that would excite him. During his portage sessions, he got to the point where he'd have a brief look at the task, complete it or push it away, then bugger off to the other end of the room, suddenly not interested in the funny noise maker he'd been so excited by the week before.

He developed a better rapport with his Salt, when he actually saw her, and she manged some VB give and take work with him, but he considered that her job and no one else's so it couldn't be replicated.

Even at almost 13, he's very difficult to motivate and still assigns defined roles to different people. I'm not allowed to wash his hair or chase him to bed!

Yes - we paid privately for ABA as the LA offering for pre-school support was pathetic (6 1-hour group SLT sessions 1x per year!). There are some good Facebook groups to help find ABA consultants and tutors - try ABA4All, Autism Parent Empower and Special Needs Jungle as a jumping off point. You definitely should be getting more support for your boys, especially as their needs are so different. I found our ABA consultant via the paediatric neurologist we consulted privately as the NHS process was taking too long. I think that if you can find one solid professional who is able to really understand your needs you will find that they can connect you to the next step and so on. With regards to signing, imitation was another pre-requisite skill DS didn't have (and still doesn't spontaneously but has learned how to imitate in a learning setting) so it is a long process. The difference is that for some reason, he finds signing more motivating in and of itself than PECS (which he really couldn't be bothered with - there is literally nothing he wants badly enough to go through the process!). The AAC device is definitely the winner for him, however. Not only is process motivating, but he loves that it gives him a voice. I hope this helps!

No spoeech does not mean no communication.
PECS signs iPad apps
Ds has no verbal speech
Few signs
Started PECS moved to AAC
Uses iPad running gridplayer at his level
No speech but learned to read. Assume competence.
Start early with signs PECS photo choice boards and iPad apps.
IPad apps are the way forward look at Onyou can easily personalise
In this case teaching your child to point swipe and use an iPad is crucial for communication in future.
Start with simple photo choice boards

Look up starting Aac
Low tech AAC
PECS
praacticalaac.org/video/video-of-the-week-strategies-for-helping-early-aac-users-engage-and-interact/

And also support ABA approach to integrating AAC

Our son is 9, deaf, autistic and has severe learning difficulties - when I say he's non-verbal, I mean exactly that, he has NO words whatsoever. He's only just beginning to understand that communication can get him what he wants, so he's still at the stage of either bringing us something (a plate or empty crisp packet) or leading us to something (the toaster mainly!)

What does life look like? As normal as can be for us - we don't know any different, he doesn't know any different, so this is our 'normal'

Sink Girl with regards to twin 2 I would give him the sensory experiences he enjoys (there are a range of sensory toys you can buy or everyday items you can use) and use relevant language as you play with him or watch him - push, pull, blow, in, out etc. describe different textures and colours, that sort of thing. You need to follow their interests to get the most engagement from them but try to integrate yourself into these things too as much as they will let you.

Thank you so much - some of these things we are already doing, but the rest I’m going to research right now.

Twin 1 is amazingly good at the iPad - can swipe to find the app he wants (even if it’s inside a folder), and then the apps he can use absolutely shocks me. He started out ones where he was sorting shapes by colour, shape and size, now he’s on to sorting real objects by overall size and shape, or sorting letters into a word, numbers into sums etc (they have the outlines but he has to choose from several). Each time I think he could never do that, he nails it quickly.

Both boys can communicate in some ways - lifting their arms if they want to be picked up, handing me the TV remote if they want it on / want me to change the channel, twin 1 will go into your pocket and get your phone out and push your thumb to the home button, twin 2 will push my hands for the movements in songs or touch my mouth if he wants me to say something, and both have started turning my face to them if they want me to look at them. So they are finding their own ways to communicate but with no pointing even its very limited.

Twin 2 is a fickle thing - one day a vibrating cushion will help him focus and he will love it, the next he wants nothing to do with it. Same with any toy, any object. I’ve bought every type of chewing toy that exists but they’re not interesting enough for him - he wants to chew on wood mostly which just isn’t safe. He’s even bitten chunks off plan wood toys.

At 2 my dd didn't talk at all, she had a few words by 3 and by she talked properly. She was diagnosed with asd at 2.5 and I was told she may never talk. She's at university now!

Ps my daughter had aba from 2.5 to 5.5 when we moved back to the U.K. and they had never heard of it - thankfully her (American) teacher taught me the basics and she was past the most critical early intervention stage. I can't prove it helped but she's doing great!

If you are.going to do PECS do yourself a favour and go on the proper training. Parents go at half price. It is a very prescriptive system.and you need to learn it properly to implement it correctly. Implemented correctly it can, in my experience, work wonders.

It doesn't hinder speech either so don't believe anyone that tells you that!

I found a FOI request for my local council regarding ABA - apparently only one child in the whole borough has ABA funded by the council.

I’m panicking a bit now as I’m pretty sure we won’t be able to afford to do this but I will look into it.

There’s a PECS course near me in June which I will sign up to.

Are they twinning and using a common language or signals/signs instead of speech? Even NT twins normally have issues with language and speech as they tend to create their own way of communicating.

Also have you ever done makaton with them for communication? If he can use an ipad he should be capable of signing.

Just had a look at whether we could afford ABA, and that’s a definite no, unsurprisingly, and certainly not for two children. I will do the PECS course and see what else I can figure out. So frustrating not being able to access something that could help.

No, they used to interact until about 14 months old then they stopped. Until recently they completely ignored each other - I’ve noticed lately them looking at each other sometimes, and twin 1 will sometimes reach out and touch his brother on the back of arm if they are stood close. Otherwise no interaction at all.

He’s very capable of using an iPad but until recently wouldn’t look at you while talking to him / signing - he’s looking more now but he doesn’t mimic anything, never has, so I’m not sure he’s likely to start copying signs.