Non- verbal autism - prognosis?

[Namestheyareachangin]

Hello, I am looking for information but it seems so hard to find. I'm hoping some of you may be able to help?

A family member has diagnosed autism and no speech at the age of 4. At this point, what is the likelihood of them gaining speech and being able to have any kind of independent life as an adult? When I search for evidence it's either very damning 'no chance' or 'miracle stories' usually attached to some sort of sales pitch for a method or treatment. I just want to know what it is their mum and dad are facing (mum and I are close but she is not the sort to talk about things that may be upsetting her), so I have a better idea of how to be supportive and not say stupid hurtful things meaning to be encouraging. Their elder child also has an autism diagnosis, but DC1 speaks well and is a very engaged and engaging little person in their own way. They began speaking around 3.

I think it very much depends on the child.

A family member of mine with Autism did not speak until he was 8 and now lives independently. My ds, who lost all his language at 2 started regaining language and communication at 4 and is making good progress.

I think the main things to consider are that speech is not the only form of communication and that even though he may not speak, he may still be able to understand.

We now use Makaton (a form of sign language) and visuals to help ds. There are also things like PECS and AAC (I think that's the acronym) which can help a non-verbal child to communicate.

I guess the best thing is to follow their lead and if they start using a particular communication system, learn about it as much as you can.

Following with interest - I have non verbal twins with ASD who are 2.5

From everything I’ve read it seems early intervention is key - we are using a mix of signing (useless so far as they don’t mimic anything) and photo cards (much more successful) so we can move on to PECS (one is very smart and already understanding this very well). SALT assure me that this will support verbal skill development but no guarantees they’ll talk. They are both attempting to communicate more - this morning one led me by the hand to his little table and sat down, because he wanted breakfast. The other will pull me off the sofa and push me to the kitchen when he wants a snack. They are finally getting to the developmental stage where they want specific things so there is frustration and tears but I’m hoping this will encourage them to talk.

Like livpotter says everyone is different. All you can do is give support and get on board with whatever they decide. She also makes an excellent point about other methods of communication.

Ds son is 9 and doesn't verbally speak a single word. He has used pecs and various aac systems with mixed results. He currently uses an ipad app called proloquo2go which allows him to construct sentences by selecting buttons. The program has a number of genuine children's voices, one of which is now his voice.

This morning he said good morning to me, told me how he feels, told me what clothes he want to wear, that he wanted toast for breakfast with butter on and that he wanted to play with his hot wheels toys.

All is not lost if speech doesn't develop, there are many other avenues to explore when the time is right.

Ds started to speak at seven and now has what passes for normal speech (still has communication difficulties obviously) Dd acquired speech in the more usual time frames and yet has more difficulties than ds does now. I think it is very much an individual thing.

Thanks so much for these encouraging stories. It's great to hear that even if his speech doesn't develop it doesn't mean he won't be able to communicate his needs in other ways, and also that speech can develop even so late in the day. I love him and his family very much and just want to offer encouragement without being unrealistic...

From what you've all said the very best thing i can do is educate myself on the strategies/alternative communication methods and be informed when asking them about how they are handling it and what I can do to help with this.

Any other tips on supporting his mum emotionally (bearing in mind she is not a very demonstrative person and not comfortable with a lot of emotion, either expressing it or it being expressed to her)? I don't want to get in her face and make her uncomfortable, but I also don't want her to feel I'm oblivious to what must sometimes be a very tough situation... But I also don't want to sound like I'm saying anything negative about her son, who I think is wonderful and I'm sure she does too! And the absolute LAST thing I want to do is make my discomfort her problem... It's a minefield!

we have 4 years old who is non verbal. not a word. he lost language when he was around 2. However, he's very interested in sounds, makes us repeat words and sounds from his ipad games. sometimes we notice him making lip movements along his ipad or nursery songs. Stared to use some makatone signs. othervise he's quite active and has no problem explaining what he wants by pushing, bringing things, pointing etc. to be honest, the initial warries are gone and we look quite relaxed at the problem - if he talks, very good, if not, still not the end of the world - will find other ways of communication or technology would develop to assist further (like apps or gadgets).

You've articulated perfectly the question I have about my son that no one can answer .

He's just turned 4 and just had an autism diagnosis . As a mum- I'm in your friends position and it's so hard. It's the unknowing and the fear. It's the complete uncertainty of your child's future which emotionally drains you, I have a 5 year old that's fine and I know will go on to do great things where with as my 4 year old I literally have no idea what will happen and no one can tell me the likely hood of him going on to talk and have a normal life. I just want to be able to reassure him and tell him how much I love him and have him understand .
One thing I have found is that amongst friends and families supportive 'he'll be fine ' comments when someone actually recognises how hard it is like Jesus Christ
You've got your work cut out -I feel sort of validated because having a child like this is a daily challenge and is really hard work .
Lovely of you to be wanting to help your friend I'm sure even if she doesn't show it she appreciates your support x

@coco2891 thanks for your message. I hope things get clearer for you and your 4yo and I hope you have a lot of love and support around you. It's hard to know what to say without coming across either patronising and glib or doomsaying - certainly from the POV of thoise outside your situation it is just astonishing how strong parents coping with this sort of uncertainty are. Huge respect to you x

I agree with coco2891 it is the fear and not knowing how it will turn out that is so hard. Part of me would love for someone to be able to tell me that DS2 will speak and be able to have a conversation in x amount of time, but that is not how it works. He is doing really well and progressing all the time (mainly single words and a few 3-4 word sentences at the moment), but it is hard not to worry. We met up with friends last week and their little boy is exactly a year younger than DS2 and it brought it home to me just how far behind his peers DS2 is.

There is a great article here from Not Raingirl about her experience of being nonverbal. It echoes what pp have said about there being lots of different ways to communicate, verbal communication only being one of them. I find this very reassuring and it helps to put things into perspective for me. Whatever happens, it will be ok.

@magicroundabouts yes really hits home when around younger children chatting away 😖 my nephew is a year and a bit younger and when they're all together he plays and chats with my 5yo the way my 4yo should and it breaks my heart 💔

My DS is a teenager and non verbal, the outcome in my limited experience is more to do with the whole communication rather than the ability to speak. For DS is was more than not talking but his inability to focus on makaton and pecs. The learning and communication difficulties have a stronger influence than the verbal abilities in the future outcomes. I know a few teenagers who still are not talking but are communicating well.

I have a 4 year boy is non verbal too. He is potty trained late last year. He lost his speech at 20 months there about. He says sIngle words but keep losing it, but has been repeating the numbers 1-10 since December 2018 till now. He request by pulling, bringing and choosing. Is really difficult for him and me. How i wish he could share his day at school with me.

My 26 month old girl is non verbal on journey for autism assessment and so worried about her future and find it so hard to listen to friends childrens waffling on to them

I know how difficult it is for you but they do change in their development. So don't be too hard on yourself dear.

You might find it interesting to read "the reason I jump".

My son speaks so no advice on that side, but you also asked about emotional support. I'm not sure if this is appropriate for you but for us, the very best response we've had from friends is when they simply engage with DS. I have one particular friend who just always welcomes him. When the others go off and play she doesn't push him to go too, she says "right, what shall we play?" We sit round and drink tea and play Orchard Games with DS while the other kids do their own thing. Usually the rest come and join in before long! It is really relaxing being in her company. She's also one of our very, very few babysitters because she is not scared to look after him. It can be hard to know how to act sometimes with someone else's child, but trying is better than not trying and you can always ask your friend for ideas. I don't know much about your friend's son but a safe bet is often to start just doing what they are doing, alongside, though be wary of taking their toys. Don't tell them what to do - "Ah you've got the red plate. Can you put the cake on the plate?" etc. Just follow them.

You don't need to do a tonne of reading. The very best support comes from people who don't need to know the details of "what's wrong" but just take the child on their own terms. It sounds a bit top trumps but generally, if we are having a difficult time, I don't want to hear "oh yes my NT child had 6 meltdowns today, I know exactly how you feel." I prefer "That sounds like a truly shit day. Wine?"

My DH doesn't have an autism diagnosis as they didn't exist when he was a child. His official 1970s diagnosis is 'unidentified developmental disorder' but it's obvious now that he's autistic. He didn't speak and at school he daily one to one lessons with a specialist teacher.

He still doesn't talk much, only when necessary, no small talk at all. As an adult he's doing very well for himself. He's married, obviously, has 2 children and gets paid to do his special interest (chemistry professor).

Unfortunately, there is no way of telling what the future will bring, every child is different. My boy is 6 and non verbal and although it's been introduced, PECS or exchanging picture cards are still not something my child is able to do.

What keeps me positive, is that he is happy and can tell what he needs in his own ways. By body language or guiding me to what he wants. You learn to read your child and those who spend enough time with him will do, too. In the daily world, the majority of communication we use every day is non verbal, so spoken words are not everything.

What annoys me are those who ask me, when will your boy finally talk, he must not be getting the correct help. Whilst he is getting great help every day. It is important for people to know that you can guide your child, but you can't force them to talk. It is far more important that they find a way to communicate than it is to find a way to make them talk.

What has really helped me are the people who told I am doing the best I can, I'm a good mum and I'm allowed to find life difficult at times. That they can see I am raising a happy child and that their abilities are far more important than their disabilities. To focus on what my child can do not what he can't.

I try to stay positive and not to listen to horror stories about how difficult the future of non verbal autistic children can be. You will often hear stories of the two extremes, really negative ones or miracle stories, but there is so much more inbetween that we do not hear about. No one knows what the future will bring or how your child will develop. Over the years so many positive changes have been made to make autism better understood and to provide better lives for those who deal with autism. So I have faith that things will only continue to get better.

No one knows what is going to happen so rather than a prognosis, I take one day at the time. Worrying about the future in which we don't know what will happen and we can't do anything about will only put you down or drive you mad.

I really like the fathering autism vlog on youtube about a family with a non verbal teenager.

You asked how to be supportive. I have a nearly 7yo with classic autism, and he didn't talk at 4. He does now talk (he started PECS at age 4 and that really, really helped, and then the language came gradually), but is very delayed and has echolalia.

In your position, my advice would be to ask the parents what they need, or how you can help. Very, very few people did that for us. Or asked how we were and really wanted to hear the answer, rather than a simple "fine, thank you". It was almost as if they didn't want to acknowledge what was happening to our family, how hard things were, and the knock on effects.

If you want to help, and you sound very sincere indeed, then ask how you can help. Practical help was what we needed, some time to ourselves would have been fantastic as were both exhausted and very out of our depths we still are.

You sound lovely OP.

How is his understanding of language? It is worth being aware that it is possible to have difficulties in producing speech sounds separately from or in addition to ASD which is worth being aware of as SALTs can assume lack of talking is due to ASD alone.

My DS still has no spoken language at age 5. The paediatrician originally thought he might have ASD as he wasn’t talking but whilst he definitely had joint attention and language delays age 2-3, he has since caught up in these areas and the main issue now is speech. He demonstrates age appropriate understanding of language including nuance, but can’t say a single word due to apraxia/verbal dyspraxia.

We are absolutely fine and very happy although it was tougher when he was younger. We are used to him not speaking and don’t really notice it. He communicates richly with us by gestures, signs, facial expressions, answering yes/no to questions, and more recently drawing pictures and starting to write. So don’t fret about the lack of words in and of itself.

Good luck and I am sure your DN will do well with such a lovely family

I’d help them to get a really, really good SLT Assessment. Not just anyone. Someone very experienced in non verbal autism.

Get the Hanen programme - look online.

Build up non verbal interaction as this is the basis for verbal.

Have they any sounds at all? Like baa or daaa? I’ve read that with quality therapy a lot can be achieved but it’s work and money. Even with just a few sounds. Use PECs but personally I’d not over rely on that or communication boards - you’ve got to give that kid a chance at verbal speech and they will need masses of expert encouragement.

My Dd spoke around 4. She actually went on to have good descriptive/ technical language. If anything she has a gift for language in someways. She had always good communication though, in her own way. Her body language was clear and if you knew her you knew she was following you, just differently. She retained the difficulty with nuances of social communication, she is fabulous 1:1 but in groups withdraws and can’t manage the different interactions all at once. She is literal in her language, despite personally using good storytelling language and metaphors herself, for example getting genuinely worried over things like the news saying brexit will tear the country apart. Once you’ve chatted though she’s fine for future stuff, she just can’t usually analyse unfamiliar situations.

Finding an effective communication system is the key. And never giving up hope. Once a child has the communication system that is best for them then it takes a lot of frustration out of their lives and gives them a better opportunity to learn.

Also there are a few documented cases of adults with autism who learn to talk even up to their 30s.

But however a person communicates as long as they can make themselves understood without frustration and confusion that's what's important.

My son is 8yo and is non verbal and autistic. He also uses the Proloquo app and although he still can’t really tell me about his day, he communicates really well with it, recently he has started to teach me what the sounds he makes with his actual voice mean, he will type out what he wants to say and then make the sound, I can now understand about 20 words, I’ve always said he will talk one day, none of the professionals believed he would but he’s proving everyone wrong. As others posters have said, no one can predict the future and every child is different (autistic or not),
His meltdowns are less frequent now, as his communication is improving, he is the funniest kid I know, everyone says he’s got a great sense of humour, and for the most part he’s a really happy boy. I worry about the future - what will happen to him when I’m not here anymore? Who will take care of him? (I’m a single parent). But, I try not to think about it because it’s too scary, and also, he’s developing still, he’s gaining new skills all the time. We celebrate every milestone, on mother’s day he actually said “mother” totally unprompted. He brings such joy to my life.
The early years were really tough, he didn’t sleep, would only eat chips (nothing else at all), as a mum, the support I needed was someone to listen and not judge and also someone who would help out to give me a break so that I could sleep.