Speech and language delay with ASD traits - will he ever learn to speak?

[ChattyIntrovert]

Hello all,

This isn’t really a thread for advice, more to get an insight in what a child like mines future may hold. Though every child is different I want to hear success stories or progress improvements in SALT when children similar to my Ds grow older.

Brief description of ds, he’s 5yo and can request for anything he wants (even if he doesn’t know the word for an item he will tell me the colour of object etc). He speaks in phrases mostly (gesult language processor) but struggles to form spontaneous sentences. Usual phrases “ let’s take bath, open the door, shoes on, I want ___ “.
Anything else is usually one to 2 words but mostly one word.

He lacks mature play skills but does draw for a while aswell as make things out of playdoh but his play is extremely immature for his age. He does sing and make noises with his mouth constantly throughout the day if not engaged in an activity or if someone isn’t speaking to him. (Echolalia/ verbal stim?)

He is fully potty trained and asks for the toilet, has a younger brother 3yo but doesn’t play with him unless it’s rough and tumble, does play alongside him though and shares (refers to him as baby brother). He is very affectionate with us and lives tickles and cuddles, he is a sensory seeker and loves to jump, bear hugs etc.

Does this ring a bell, any child similar? I’m desperate to know if he will ever speak age appropriately.

*No diagnosis as of yet, moved abroad from UK in 2020 and spent most of the pandemic at home with non English speaking nanny (I know not ideal but his safety was Important as he couldn’t tell me if anything happened and she was trustworthy). After that found a British nursery that wasn’t great for him as he was left to do his own thing. Moved again now hopefully this is our last move and I hope to get him ABA/SALT/OT and a good school. I do feel I’ve left him down but this is some background. (Think he may have been doing a lot better than he is now with the right help in place but trying not to dwell)

Please if you have any stories of children like this who go in to talk normally respond to this thread, I’m in need of light at the end of the tunnel.

Bump

Bumping again sorry

I'm a bit confused by your post. The title asks if your DS will 'ever speak' but from what you're saying, he is using language so he's not non-verbal? From your post, it sounds like he actually has a pretty good range of words/phrases? The fact that he can use language to request what he wants is very encouraging.

My Ds was completely non verbal until almost 4 - as in he didn't have a single word. (He has ASD.) It used to break me when I heard other DC telling their parents that they loved them. He went from no words to full sentences in a few weeks which his consultant said can happen for some children. My Ds's vocabulary is now better than most adult's, (he's 13 now) - BUT he still uses language in an a-typical way. For example he can tell you in detail the evolutionary process of a specific type of dinosaur (one of his special interests) but he will talk 'at you' and not realise you're bored.

One of his Speech and Language teachers has told him he needs to ask people how they are - so he will ask that but it's like he's 'reading a script' - he doesn't care or listen to how to you respond.

I guess what I'm saying is IF your DS has ASD then he will always have social communication difficulties: that is one of the diagnostic criteria. That's not to say our DC don't make huge progress and change over the years. I never thought my DS would be able to attend a mainstream school but he's now at secondary school and excelling in science.

I know it's impossible not to worry about what the future holds - that's the job of all parents. I would say though, that in my experience, it's best to try and focus on the what you can do in the here and now.

You're getting your DS SALT which is great - and starting DS in school - although it will probably come with its own challenges - in my experience though going to school has helped my DS hugely with his language/social communication.

I would say in day to day terms, talk to your DS all the time, physically get down to his level and play/engage with him (I'm sure you do anyway). Hold things up to your face - puppets, bubbles for example to encourage him to look at you as you're talking. Continually point things out of interest to him. You say he has a DB - that will help him enormously.

A good speech and language teacher will give you more tips to encourage his communication.
You sound like a great mum.

@Toomanyminifigs I can’t thank you enough for your in detail response. I’m sorry by ever speak I mean, back and forth conversation, telling me about his day, telling me he loves me (as you mentioned it’s heartbreaking) let alone other children, ds2 who is 3yo speaks to me on the phone and tells me about his day and tells me what to get him from the shop. I know it shouldn’t but it stings abit to see his younger brother pass him by Miles.

Even the small things he does say are requests for things and I have to drag it out of him to use one word. I suppose I’m waiting for that click that happened with your ds to happen and for him to just be fluent in a span of a week, better yet overnight. Your ds sounds like a smart young man and I’m sure he’s made you proud at how far he’s come.

Im not focused on a diagnosis tbh I feel like I need to get the ball rolling on everything mentioned above regarding school and therapies. Everything is private here so a IEP will be drawn up for him regardless and he will have access to LSA’s etc (aslong as we pay ofc). So it’s not at the forefront of my mind to take him to a pead and have countless assessments done when his problems are apparent and I just need to help him as much as I can at the moment.

I think there is a fine line between ASD and severe speech and language delay/disorder. When you can’t speak much it’s difficult to be social and communicate past getting his needs met in my ds’s case. Can I ask when your ds was younger did he have any verbal stims or echolalia, if so do you have any tips?

I can’t thank you enough for responding I really needed someone to speak to regarding this. I do feel people don’t see what he is capable of despite all of his issues, he has a sense of humour, intelligent (knows numbers, colours, letters, shapes, animals and even dinosaurs), he’s affectionate (all I have to do is silk and say I’m sad for a hug), yet people just see a 5 year old boy that has a blank stare when asked a question and breaks out into song or makes strange noises constantly over and over again.

I shouldn’t care what others think but I do as it makes me feel like he’s been written off. Like you said school is going to be a long journey, I just hope I am able to put support in place for him to catch up with lost time. Thanks for saying I’m a good mum, don’t feel like it… the pressure always gets worse as does my anxiety as his birthday comes around. It’s next month and he turns 6!

I long to hear him speak fluently and age appropriately.

Just to clarify, stopping the vocal stims aren’t for any other reason other than to allow him to take in vocabulary around him. I work and he’s at home like I mentioned with the nanny, they have toys and she speaks a small amount of English (probably just as much as he does lol) which isn’t much. I’ve put a ban on screen time for prolonged periods of time so no tv, just short bursts of YouTube on a device when he asks (I want him to have a connection between asking and receiving, so if it’s not dangerous lol he gets what he asks for).

So the majority of the day he’s singing and repeating things and making sounds. What makes me think it’s a stun is sometimes he will stop what he’s doing, look up and belt out something in his best singing voice. He can be redirected but he’ll continue if he wants once you leave him alone. And from what I understand from self stimulatory behaviours is that of a child can make their own pleasure by stimming, why seek pleasure from other things by asking for them or why even engage with others when you can have fun on your own.

And because they are vocal stims, I feel like they are blocking the everyday vocabulary used around him by others that he so desperately needs to be familiar with.

You've already identified your DS as being a gestalt language processor - have you found any advice from speech therapists who specialise in this? It seems like a growing thing in the US, but there's lots to read about online if that's not where you're based. The expert behind the approach is called Marge Blanc and it's called Natural Language Acquisition (hope I'm remembering this right), As a starter, you can find lots of bite sized chunks on Instagram from an account www.instagram.com/meaningfulspeech/, and another one www.instagram.com/bohospeechie/.

In a nutshell, they say that gestalt language processors learn language in chunks and, with the right support learn enough situation-appropriate gestalts that they begin playing around with them, chopping and changing, and eventually reach a sort of tipping point where they're finally ready to break all their gestalts down and use the resulting words to create original language. According to Marge Blanc, children go through recognised stages and, when they get to stage 3 or 4, you can see that sort of "lightbulb moment" with many of these children, where they go from a long period of using delayed echolalia to suddenly using much more original language within days or weeks.

It's worth taking a look at the tips via the instagram accounts - in large part it involves lots of narration, teaching them new gestalts (in fun situations with lots of animated voices, singing - whatever is memorable for them), and responding to and acknowledging the gestalts they use - which can mean speaking a shared, if not "correct", language for awhile. Probably stuff you're already doing instinctively, but the advice helps you put a finer point on it and helps you see the road ahead a little clearer. Their advice suggests that, if your child is showing an inclination to communicating with you through language (which your DS obviously is), they absolutely can make amazing progress, it's just a matter of giving them the right support to help them on their way.

My DS is two years younger than yours (so I can't provide any glimpse into your future!) but I've recognised so much of what he's doing in what they describe, and have seen how using their strategies is slowly helping him progress (I imagine I'd have a greater impact with proper training or, better yet, a specialist SLT, but hey ho!)

@Scratchybaby your ds is lucky to have you. Thank you for this amazing information. Yes I know that ds is a gestalt language processor but I’ve never thought there would be a way to use this as a strength to help him acquire spontaneous speech.

Im guilty of not encouraging it sometimes because I just want him to be able to speak freely, but what you said about them eventually doing so makes a lot of sense. I can see it in my ds eyes, he wants to speak to me but doesn’t have anything to say.

thank you once again! Im defo going to use all the resources you shared. Please feel free to pm me as it seems you are on a similar journey with your lo. I’d love to exchange tips and resources.

Aw, that's a lovely offer, thanks! And yes, I read your line about being able to see the intelligence, sense of humour, talent in them and just felt all of that - I can see all that when I look into DS's beautiful eyes - he's so loveable and has so much to offer the world. Right now he's being held back from sharing some of that simply by his language skills, but I really feel like he's going to get there. I haven't got to the point of looking at conversational skills yet, but the way he's already attempting to use his words to communicate makes me think he'll find his way to where he wants to be.

Those resources are also really heartening, in that they emphasise working with a GLP child's approach to learning language rather than against it because to them, gestalts are meaningful language. To ignore it or try train it out of them can actually waste a lot of useful work they've already done to get to original language. Honestly, it's actually really fascinating once you start learning about it!

@Toomanyminifigs as the parent of a non verbal child I’m always interested when I hear people say that their DC went from completely non verbal to a sentence, not that I can let myself hope this for DS. Can that really happen? Just so I haven’t misunderstood he said absolutely nothing, then just a sentence?

Do you think he was then choosing not to speak before? This is a question people ask a lot I find…. Can he speak? Can he not physically repeat the words or is he choosing not to/ not socially motivated to? My answer for DS is always that he physically cannot, me holding a desired object (much desired object) that he desperately wants cannot elicit him being able to repeat its name even if I say that one word a million times. The chance of him just one day saying ‘oh yes please mum I’d like the x’ when he cannot seeming repeat ‘x’ seems highly remote.

Or was your DS not like my DS in presentation?

@carriebradshawwithlessshoes That's correct. My Ds never babbled, never said single words or even copied phrases - literally nothing. He did make strange noises - stimming maybe? They were nothing like speech sounds though. Even his SALT wasn't sure if he would gain recognisable speech.

At age 4, we took him on holiday (I am never going to forget this). One day we were walking on the beach and he just said the word 'boat' - it was so clear. My DH and I literally couldn't believe it. We both cried!

I can't remember the exact timescales but he went from that one word to speaking in full sentences in a very short period of time. I think it was maybe 4 months as he was definitely speaking in sentences by the time he started in reception that September.

Interestingly, my Ds tells me that he didn't speak because he was 'observing'. Also interestingly, Ds's consultant said that sometimes DC with ASD will do things in a different setting (on holiday, at grandma's house) that they won't do at home eg gain a new skill, try a new food. This was mentioned in another thread on this site I saw the other day.

As I say though, my DS still doesn't use language in a 'typical' way and some of his pronunciation is still a bit unclear if you don't know him.

I wish I knew what suddenly motivated him to start talking as I would love to be able to share the 'magic' as I really do know how heart-breaking it is not to hear your Dc say 'mummy'/'daddy'.

My friend has a DC who has very complex needs and she was completely non verbal until 14. She can now say a couple of single words and those words are so precious to her mum.

@Toomanyminifigs what a lovely story. Sorry I’m picking your brain here. Did he understand (when he was non verbal), if you had shown him a book with various pictures including a boat and said where’s the boat would he have pointed at it? Did he follow instructions back then (to bring you things, get his shoes and so on)? I ask because all SALTS labour the ‘they must understand to speak’ point which I sometimes question (DS understands, his instruction following is shaky though.) He also has zero attention and is always moving through life at the speed of a Boeing 747 which I don’t think is good for any skill.

By consultant do you mean a salt or other (Aba?). He sounds a lovely young man and it is such an inspiring story. I often think we have passed the cut off point. I hope not but do spend lots of nights awake thinking about it for hours at 2am.

My Ds has been under a paediatric neuroscience team at a London hospital since he was 2. Not only did he not speak but he also didn't eat - but that's another story!
It was his speech and language consultant at the hospital who told me that sometimes ASD kids can acquire language in a very unusual way.

So in answer to your questions. My Ds never showed 'joint attention'. He never pointed to either request things or to show me something. It was his speech and lang. consultant who alerted me to the importance of pointing. He spent the first three years of his life mainly crying. He never brought things to show me, never followed instructions. He had zero interest in other children (he still doesn't).

He did have speech and language therapy from 18 months though and a play therapist came to the house as he was flagged as very high risk for ASD due to all of the above.

I know the 2am worries thing so well! My worries now centre around how Ds is going to cope as an adult. I'm not sure he's ever going to be able to live independently. It's so hard isn't it? I'm sure all parents worry about their Dc forever - that's being a parent. But with our Dc there are so many things to worry about that other people just don't realise.

How old is your DS?

@Scratchybaby I’ve sent you a pm x

Hi there, I thought I would reach out and reply to your message because you just described my child, he's nearly 6 and is exactly like yours. Are you any further forward 6 months on from your post, do you see a difference in your child's speech? My son is gestalt processing just now no full sentences yet but only single words and just requesting things. He also verbal stims. Can this all get better? How yous getting on now? Please reply, I need some hope! Thanks X

@ChattyIntrovert
Hi there, I thought I would reach out and reply to your message because you just described my child, he's nearly 6 and is exactly like yours. Are you any further forward 6 months on from your post, do you see a difference in your child's speech? My son is gestalt processing just now no full sentences yet but only single words and just requesting things. He also verbal stims. Can this all get better? How yous getting on now? Please reply, I need some hope! Thanks X

Hi - I’m just reading your post now and have a very similar situation with my daughter who is 3 years and 9months. How is your little boy doing now? She was diagnosed a year ago but had regressions in speech at 17 mths and behaviours such as spinning, reduced eye contact, lack of response to name and switching on/off lights started. We are seeing gradual improvements - eye contact back, responding better and speech coming. At present she still does a lot of babbling and verbal stimming but she can request what she wants and has understanding. She is a gestalt language processor. She is also very sensory seeking - running, balancing etc. She will also hand flap when excited. I’m hoping for improvements in speech and regulation when she starts pre school in September. Just like you I am worried about my child’s development and future

@ChattyIntrovert @Daniela32 hi both I’m in a very similar situation will love to hear how your little ones are doing

Hi, my son is doing really well now, he's nearly 6 and a half and I would say he's almost fully talking! Just a wee bit to go now the more time goes on I think things will just get better and better. He flaps his hands a lot less now and vocal stimming still slightly there but less too now! He is intelligent which I think is a major help. He has just moved to a speech and language unit from mainstream so hoping he will
make friends and his interactions will get better too in his new class! But things are going in the right direction, I hope this helps x

My daughter is also improving. She just said her first three word phrase yesterday. She is 4 yrs and 3 months. We are doing ABA since August and it has helped immensely. She also starrted preschool in Sept and after an intial screaming period - settled really well. She still has delayed echolalia and Babbles but we see a gradual reduction in this and she is gaining more and more interest in engaging with her siblings and classmates.

@Daniela32 wow that’s amazing progress in 6 months! Was he in speech therapy/have you been doing anything to bring his speech on?
Can you have a back & forth conversation with him or does he mainly talk at you? (That’s where we’re at with my DD, she only talks at people and doesn’t ask them questions/realise they may be getting bored!)

My autistic DS only had about 20 words until he was three, mostly combinations of "door there", "door over there" and "door!" We took him to a speech therapist who gave us a couple of tips for encouraging him to talk...

Within a fortnight, he had an explosion of speech and a couple of months after was memorising/reciting whole books. He learned to read a few months after that. Now, aged seven, he sounds years older than his age and we joke that the trouble is shutting him up!

I don't think speech therapy is that miraculous, so I think he was ready to speak already when we took him to the therapist. The childminder we had at that time always said about him that she thought he was thinking complex thoughts, but just didn't know how to put them into words.