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Nonverbal at 3 but went on to talk?

(48 Posts)
boobybum Sun 02-Dec-12 11:38:14

Just wondering if anyone has an asd child that was nonverbal at 3 but subsequently went on to talk. If so, was there anything in particular that you feel helped bring on language? I know that anyone's else experience doesn't mean the same for my child and I know that what is important is 'communication' whether verbally or through PECS/signing etc but just curious about other's experiences.

sickofsocalledexperts Sun 02-Dec-12 13:25:22

My DSD was pretty much non verbal at 3. She has recently passed 13 GCSEs (of which 9 A grades) and is headed for university and a totally normal life. The main thing for her, I think, was mainstream school - with a decent LSA (with a brain and flexibility). The other crucial point was that she was diagnosed mild to start with and that that she has a normal IQ (and perhaps those 2 are the same thing).

For my DS, who is way more severe and has learning difficulties on top of the autism, ABA is the thing that got him talking. His speech is not normal, conversational (and may never be) but he has thousands of words and phrases and can communicate his needs and chat with us a little bit (improving every day).

I know for sure it was ABA, because he was at a TEACCH school till 5 and they told me he would never have words and had moved to signs. ABA gave him words within 3 weeks, plus toilet-training, eradication of aggression, enabling us to walk down a road without carrying him, teaching him to sit still so he could learn etc etc.

Ilovecake1 Sun 02-Dec-12 13:56:06

My LO was non verbal at 3 but now speaks fluent in 2 languages and she is 7 yrs. PECS worked so well for her as she is extremely visual, within a day of using PECS we had words, within a week we had over 50 words and after about a month she sang her first song. I have it all on video as it was just amazing to see her understanding communication and then using words! The only problem we encountered was that there wasn't any SALT who had training in PECS and I travelled about 300 miles just to get on the course as I knew it would work for her after reading about it and just booked myself on the next course! I think different things work for different children, we were "PECS MAD" for about 6 months and she was then speaking well and only really used PECS as a back up when distressed etc.

EllenJaneisstillnotmyname Sun 02-Dec-12 14:09:19

My DS2 had about 20 words at 3, including 1 - 10, circle, square and triangle but nothing useful. He started PECs at 3.3 or so and came on loads in the next 6 months once he got the point of communication, with lots of echolalia. He found signing too abstract, preferred concrete PECs. He still speaks strangely, at 13, with a high pitched voice and he doesn't volunteer much info but he has an average IQ and is in MS school.

signandsmile Sun 02-Dec-12 14:13:53

My (ASD and LD) DS was non verbal at 3 (well he had the same 7 words he had at 16 months),

he is now 6 and chatting away verbally grin. His speech is sometimes a little unclear, (and random in an ASD way, IYSWIM, grin)

but for us it was signing that made the difference, he had 300+ signs at 4, and was signing sentences. (we always spoke and signed at the same time to him)

For him I feel the signing gave him communication and interaction, (I am a fluent signer) and then he added speech in his own time...

I think it is interesting that the three of us who have posted have all taken different routes, with good results for our DCs.

This is very interesting to me. My DS is three and a half and non-verbal. He has been on ABA for 6 months but although he can now do a lot of things he could not do before (including imitate gestures, do puzzles, walk holding hands....) he cannot talk yet. He has a few (very few and rather randomly executed Makaton signs). My biggest sadness at the moment is really that I fear I will never hear him say anything to me, not even mummy (he cannot make the m sound yet). I find that very hard to face.

MummytoMog Sun 02-Dec-12 14:57:02

DD had a lot of nouns (which she would randomly say from time to time) at 2.10 and would sing songs. She wouldn't ask for anything or communicate with us, just use language for her own amusement. During her first speech assessment the therapist got her to ask for something. Tailed off with a rubbish therapist, but picked up again with PECS. She will now comment on what is happening around her, point out things on walks, ask for specific things with her PECS book and is chatting away all the time. We are very confident that talking will 'click' soon given how much progress she has made (she is now 3.3).

sickofsocalledexperts Sun 02-Dec-12 16:32:57

Thedudesmummy - don't despair as the word 'mummy' took years for my boy to get (he was way more interested in Manding for juice, crisps etc) but he says it now. It is v good that your boy imitates movements now; are the tutors moving on to getting him to imitate sounds eg 'c c c' ' p p p'? That was the key for my boy, as his additional verbal dyspraxia meant actually producing the sounds was v hard for him to do and needed loads of 'echoic' practice.

48Hours Sun 02-Dec-12 16:51:31

Ds was completely non verbal until he was eight.
Makaton was the key thing that got him willing to communicate coupled with some intensive salt shortly afterwards.
I never beyond my wildest dreams thought ds would talk and him calling me Mummy melts my heart every time.

Yes, we are all working very hard on the vocal imitation, and he has a number of reliably imitated sounds (wah-wah, eee, ooh, aah etc, mostly vowels, he struggles with the consonants, although we have ka! for come and go-wah! for go). He has many hours a week of the practice, but it it quite slow going! Still, six months ago he had no imitations of any kind...

He mands with signs for a few things, but not very accurately...

Oh 48Hours that is very helpful and hopeful!

Ds1 is non-verbal on his teens after losing his early words at 15 ish months. He lost speech sounds then as well and they haven my returned.

He couldn't imitate anything at all until he was 8 - imitation is an essential skill for working on speech. Recently we tried intensive speech work and he did learn some sounds but lost them again. He has never had a problem initiating communication and has always been creative in communicating.

He now has a very expensive communication aid, and using LAMP his vocabulary is now wide and varied (gone are the days of nouns only). It's also bringing on his speech and he often speaks as he uses his device ( not clearly but you can hear the sounds in there).

Oh we did work on imitation all that time - it just took years. Once he was imitating sign (everything) was easier as he could learn by observation.

Crawling Sun 02-Dec-12 18:06:20

dd was non verbal at 3 but now she has about 100 words at 3 1/2 we are waiting for pecs as the woman who does it here is ill. But I noticed dd liked pictures so we learnt all her words by drawing pictures of different items.

mymatemax Sun 02-Dec-12 19:43:49

ds2 was non verbal until about 4 ish. He had a good level of understanding & could understand signs too but could not sign, in fact could not copy any gestures.
He was silent apart from crying.
He is 10 now & verbal although says very little through choice despite a good vocabulary.
Ds2 only started to communicate once he could copy & we ahd to teach him hand over hand how to wave, point, do thumbs up etc.
Even now he does thumbs up with his fingers poining too.
As well as imitation, the desire to communicate was key with ds2.
It has all taken alot of repetition & over learning

googlyeyes Sun 02-Dec-12 20:11:32

Ds1 was non-verbal at 3, which was v frustrating as he made a wide variety of sounds while babbling, and could imitate sounds v well.

We had been on an ABA programme for nearly a year and I really was giving up hope that he would ever speak. But when we took on a new consultant, who realised that his receptive understanding was close to nil, things moved v quickly and he had hundreds of words (nouns) within a few months. He had had no idea that things had labels were attached to things, and once he realised that everything changed. I was incredibly resistant to this at first but makaton worked miracles in kickstarting his speech. We only used it for a couple of months, and only with his favourite things (biscuit, water, crisps) but signing (especially when he did it himself, whe simultaneously saying the word) really cemented the concept of speech in his mind and v importantly helped him
retrieve the correct word for each item. Before that he would randomly scroll through all the words he knew when asked what an item is.

After 2 months he faded out all signing himself and has never confused his words again.

Now at v nearly 6, he isn't exactly chatty but knows thousands of words and has moved onto verbs

boobybum Sun 02-Dec-12 20:55:59

Oh thank you so much for replying. You have given me hope that my DS may talk one day.
TheDudesmummy - you sound as if you are in a similar position. We have very recently started an ABA program and our DS is doing well with imitation/puzzles etc. He will attempt imitating sounds but doesn't seem to have grasped the point of language yet. If I show him a picture of myself and ask ''who's that?' he will say 'ma' but won't call me that to my face. He will say 'ka' for come when he pulls us somewhere and makes the first sound of various foods (he is a greedy bugger like his father!).
On good days I think he is still so little and has already improved in some ways and on bad days I think he will never talk and will need to be looked after for ever! If only I had a crystal ball to see into the future-it's the not knowing that is the hardest!

WarmAndFuzzy Mon 03-Dec-12 02:33:02

My cousin was non-verbal until four (he is now in his mid 20s). I'm pretty sure that he would have been diagnosed now as on the spectrum (I remember the tantrums), but twenty years ago that just wasn't happening. He had no ABA, PECS, or anything else because they just weren't that common then.

The first words he said were famously 'what does conc mean?' as he was sitting in the kitchen with his parents and (NT) siblings and looking at the label on a bean tin. A few years ago he graduated with a first in History from a Russell Group university and now works for a charity and lives with his girlfriend in London. He is a bit geeky but very interesting to talk to as he knows a lot about a lot of things and believes passionately (slightly obsessively?) in what he does.

I just wanted to put that in to say that sometimes ASD kids can do marvelously, even if they have a language delay. The frustration is in not knowing which way it's going to go, especially when they're so young. I really hope it gets better for you, it must be hard (I have two on the spectrum but luckily both verbal from 2 so can only imagine).

Staryeyed Mon 03-Dec-12 08:18:18

Ds1 is 7 and is slowly learning to talk now, after we thought he never would. Its very slow progress, but he really wants to talk which makes the difference. Instead of using PECS, gesturing, or pulling to an object, he tries to say the words first. Although he gained words in the past, he seem to lose them just as quickly as he gained them.

This time it's different-he has been using the same words consistently for 6 months and learning new ones all the time. We were doing PECS with Ds1 which really helped. ABA has also helped (I wish we could afford to have a full time programme). Really it's come from him, because now he feels ready, like so many other things that seem to click into place when the time is right.

boobybum your situation does sound very similar indeed to ours! The thing about uderstanding the point of language really rings a bell with me, he hears people talk to him and around him all the time and he makes sounds all the time too, but hasn't, it seems, connected that with communication, at least yet. The funny thing is that his receptive language is pretty good, he understands lots and lots.

And 'ka' and pulling you to things, sounds exactly like my DS (although as he is not much of an eater it will usually be TV, iPad, a sliding door, or something else like that rather than food!)

willowthecat Mon 03-Dec-12 10:08:20

ds1 was non verbal til 3.6 - We did try PECs at around 2.6 with no success (although I now realise that it was not properly done so I can only re iterate that thorough training is needed to make PECs work if it is going to). ds1 began to verbally request and comment in single words and echoic phrases without any specific therapy. We were on holiday at the time so I can only speculate that a new environment where he did not know where the food was might have sparked something (?). However although I would now class him as verbal - he is 8 now, there is a lot missing and i would not class him as conversational although he does talk a lot ! So as for a lot of people, it's mixed picture although we give thanks every day for every single word he has. We did find PECS pushed on to us relentlessly even when he did not need it - our accounts of what he could achieve with words were just not believed or did not fit in with what NHS SALTs could offer. Good Luck !!!

Dev9aug Mon 03-Dec-12 10:53:19

willowcat we were and are still being pushed on to do PECS by the NHS. I think it is because they have no other strategies. We tried their version and it was so complicated.

We have recently been on a PECS course run by the consultants who invented the system and it is so simple and so different than the one suggested by NHS.

I would thoroughly recommend going on that course. It really has been an amazing eye opener and ds1 has already got the idea of preferred items.

We actually all (me, DH, our nanny, our speech therapist and the teacher at the nursery) all went on the official PECS course earlier this year, but that was prior to starting ABA and when we did start, the consultant was not so keen on PECS for our DS, preferring to go down the Makaton route in this particular case.

MummytoMog Mon 03-Dec-12 12:56:40

We found that PECS was pushed on us as well - I was VERY unkeen, in fact I refused to do it, and it was only because I turned up to a therapy session and they basically sprung it on us that we did it. Now having said that, DD is obviously happier being able to ask for specific things using her PECS symbols, like cheese or apple or potty (not that she used it, but baby steps, baby steps). She can say all these words already, so I don't know why PECS has made it easier for her to use them, but it has. She has limited receptive language (so far as we can tell) and we're pretty sure she doesn't 'get' language at all. I'm not convinced that PECS is helping her understand language but it is at least getting her what she wants without screaming. We're looking at a private Floortime therapist at the moment, to see if we can develop some play based communication therapies to encourage the leap between labelling things and communicating for DD.

Dev9aug Mon 03-Dec-12 13:14:12

thedudesmummy we were pushed to go along with signing by our consultant as well which is why we didn't go to the PECS course earlier and I am kicking myself for it.

Different consultants have different agendas and systems. Our first provider was not so keen on PECS and the second one isn't keen either but he is wiling to give it a go. We are at a point where I thought it was important for ds1 to have a system of communication rather than being verbal as the main priority.

I saw another ABA provider last week and the way he explained it was that start work on vocals first and if no success, then move on to PECS as signing is very limited as it relies on the other person to know what the sign means in order to understand, but with PECs, everybody understands pictures, so communication is that bit easier.

My consultant seems to have a rather opposite approach in that for PECS you need to have a book and all that stuff with you to communicate, whereas with signing it can be done anywhere anytime! I am willing to continue to give imitation/signing a go for now, but PECS in reserve if needed!

Dev9aug Mon 03-Dec-12 13:43:59

Yes that too, we tried signing but wasn't for us. on the other hand, we have seen some positive results with PECS so giving that a go.

Saying all that, the only reason I have decided to go down the route of PECS is because he has some echoic speech and we know that he can speak hence the priorities have shifted a little as we can use PECS to develop his speech once he can see the value in communicating.

Hopefully we won't need to get to the book stuff, but if we need to, then so be it.

It's tricky isn't it. All these decisions, ultimately it's not one size fits all, you just have to see what works for you, make a decision, work your socks off and hope for the best.

Jinglegirl Mon 03-Dec-12 14:15:04

Non-verbal at 3 here also and then speech suddenly came of its own accordhmm. Dx much later of Aspergers.

MummytoMog Mon 03-Dec-12 14:15:54

DD and I both hated the 'official' PECS folder she was given. I made her the equivalent of a fabric book with some nylon loop fabric and swapped out all the velcro on her pictures for hook velcro rather than loop, and now she has a lovely fabric book with her pictures and sentence strip in. Am making one tonight for her to take to Nursery with just a few pictures in (drink, potty, cheese, raisins etc). So if you've done the course, you don't need to spend a fortune on stuff, just get some sticky back velcro and a laminator and add bits as you need it. There are lots of free PECS pics available too.

willowthecat Mon 03-Dec-12 18:14:42

I think it is very much a case of finding out what works for your child but unfortunately consultants and experts and professionals and so on tend to specialise in one form of communication therapy and often see every child with communication difficulties as being ideally suited to what they know about and may have had success with in the past with other children. I still think that some think I am in some form of denial by not using more in the way of PECs or signing but in reality, we don't really have much choice other than to go with limited verbal speech as ds1 has shown so little interest in either PECs or signing - He still can't even wave goodbye so I really can't see him taking to Makaton.

mariammama Mon 03-Dec-12 21:08:01

idly wonders if eating a lot of marshmallows in your ds's presence might make him want them... and eventually reinforce the mm sound.. and simultaneously make sure he connects the mm-sound with mummy (am a big fan of marshmallows though, could eat them indefinitely even without pursuit of a therapeutic goal grin)

truevirgo Mon 03-Dec-12 21:16:15

My son was non verbal until gone 4 years old. We had a speech therapist do home visits to implement PECS and they supported him during mainstream school at 4 years old onwards. He started to make his own words for things e.g a biscuit was an "accy" eventually he stared to repeat words. At 8 he is only just forming sentences but a lot of it has come from using an ipad and watching cartoons or playing apps. He tends to repeat things on tv, computers rather than from humans. He uses phrases and sentences from programmes but in context, usually with an American accent as he is mimicking. I am just glad he is attempting to communicate verbally and correct him as I go along.

perceptionreality Mon 03-Dec-12 21:21:45

My dd was no verbal at 3. At 11 she does have some spoken language but it is not consistent and she certainly isn't conversational. The language she has is all down to ABA imo.

colditz Mon 03-Dec-12 21:22:22

Yes, ds1 did, and now talks continually. He had speech therapy, but play school did help, he wanted me to know about the toys there. He used to draw me pictures.

Ps don't be surprised if his first word isn't mummy. It's more likely to be car.

DS1 was non-verbal until past four. Some vague attempts with PECS and signing but we didn't really pursue either. But nursery did use (and I think school still does too) a visual timetable and some picture cards for snack time etc. He just didn't seem very inclined to be honest. Signing even more useless since he didn't copy which seemed rather a barrier to making progress.

We tend to think that he just started talking in his own time. He had reasonable receptive language and was quite effective in terms of non-verbal communication. We spent ages labelling things for him - most notably car badges. I am still fluent in this! In the end what came first for him was numbers.

Now, at just turned 6, his language is pretty good but not conversational. He doesn't speak like a "normal" (forgive me) 6 year old and you could never ask a "why" question for example and he can't (or won't) say how he feels. But for day to day living he is fine and it made a huge difference to the quality of our family life I would say.

We actually did get some SALT support early on during diagnosis (ASD) but in fact I think this was useless and the timing was hopeless. Now he's in MS school with a TA 1-1 and they run communication sessions which do seem to be helping with understanding social interaction. I thought at one point he would never speak. And I hope that I never forget the tremendous journey he has already made to get to this point.

osospecial Mon 03-Dec-12 23:00:15

Just reading this thread as dd 3.3 has very limited speech. Salt have introduced pecs last week. I know a bit about it only from the Hanen more than words book. It's dd last therapy session tomorrow ( she gets an hour a week for 5 weeks block therapy) until it starts back in about 6 months so I will be left to continue with pecs by myself. After reading some of your comments I'm really interested in going on a course to make sure I'm doing it right. Just been googling and I've found Pyramid education consultants who provide the course, is this the official one you are referring to please?

Dev9aug Mon 03-Dec-12 23:13:14

oso yup, these are the right people.

osospecial Mon 03-Dec-12 23:19:38

Thanks dev9aug smile

PipinJo Tue 04-Dec-12 08:32:52

Boobybum just to give you some hope. DS diagnosed severe Autism and learning disability lost all 15 words when had MMR at first birthday...silence besides the screams, repetitive noises for 2yrs. DS leant to imitate via ABA and then other methods sentence building answering WH questions then asking them etc this took 6yrs all together. Now 8yrs old and for first time 1 yr ago scored with the same age yr as his peers for verbal language. Up till then his receptive language was always much further ahead which is a good sign too. Verbal language I would say is not as good as his peers but the quality is far better than quantity. Coping extremely well in academic MS with full excellent support from 1:1and school both using ABA techniques.

PipinJo Tue 04-Dec-12 08:37:00

Ps I refused to use any method ie PECS DS found it frustrating previous to this with SALT for 4 months. The ABA done on a large gym ball helped. I made him look at my mouth to see how the mouth shape went...imitation basically whilst improving eye contact too.

sickofsocalledexperts Tue 04-Dec-12 08:39:01

Just want to share on this thread something the eminent ABAer Dr Pat McGreevy said at a recent lecture I attended of his.

He basically said that where a child learns to echo (or imitate) sounds and then words, he has in all his decades working with ASD kids seen only one foolproof way of turning that echoed speech into true independent speech : the AbA (or vB?) "echoic to mand transfer" protocol.

I am going to describe it badly, but here is an anecdote he told in order to illustrate how this works.

He was visiting a vvvvv rich family. They were massive PECs fans, and had bought PEcs books for every room of their mansion, every car, even one in the pool house.

As Dr Pat talked to the father, he noted out of the corner of his ear that the boy was repeating or echoing the occasional one of their words, eg "swim".

He decided to go swimming with the boy. At the side of the pool, with the boy all excited about going swimming (his major love) Dr Pat stopped him, stood in front of him and said "say swim" (but the "say" bit quieter, so as to be faded out soon). The boy echoed "swim" and they both jumped in joyously.

Then, out they got again, to the boy's disgust, but he got his reward of jumping in again when he echoed Dr Pat's "swim".

Third or fourth time, Dr P did not prompt "say swim" at poolside, but just pointed at the boy's mouth expectantly. He said "swim". His first independent mand, or request.

Now probably that family had been misusing Pecs (though actually they were so rich that their adviser had been Pecs-creator Mr Bond himself) but I think this story just might help a few echoic kids. I got goose-bumps hearing it,

Dr Pat ended by saying his heart bleeds to think of how many ASD kids there are globally, with echoic speech, but languishing in schools which just don't know this one simple protocol.

That would have been my boy, had he stayed in his Teacch school.

I wouldn't think pecs OR sign - you might want to introduce one at a time but use both.
Ds1 uses PECS (actually rarely now), sign, vocalisations, one word (mummy) and his communication aid, oh and eye gaze, and photos and whatever else is around to communicate. He may not speak but he's always commented and initiated interactions. The more methods he has at his disposal the more he can be understood.

Oh and although ds1's signs are very inaccurate he must know more than I realised. In the pre-communication aid days I had to tell him a friend of his had died. I didn't really know if he would understand but sat him down and explained. He immediately made a sign that I didn't recognise, so I asked him to sign it again (and again). He did. I found an online BSL dictionary (couldn't find a Makaton one) and he had signed 'die'. He must have picked it up from school.

PipinJo Tue 04-Dec-12 10:29:40

{{{{saintly}}}} your poor DS knew, I have found the non verbal dc have better receptive too incl my own DS.
My friends DS is very verbal but receptive very poor...
Understanding is far more important for anyone.
Have you heard of Talk .tools Saint don't know much about it but was designed for aphasia or severe dysphasia in US by ta SALT and some families are having amazing results with their non verbal Dc.

Yes we tried it, and variations thereof. He can learn new sounds, but they then slip - we didn't get any new words from it at all (so he remains with one word - mummy) although we did get new sounds.

He's so fast and expressive with his communication aid now that we've left speech for a while. We may revisit it - especially as he seemed to quite enjoy speech work last time we did it. I can ask him now anyway - using the aid - whether he wants to work on speech or not.

perceptionreality Tue 04-Dec-12 14:59:24

My dd doesn't speak much at all and a lot of people think she doesn't understand anything because she rarely responds vocally to people's questions. But when I found out I was pregnant (she was 7 at the time), people around were discussing it before we explained it to her and she started to draw pictures of me with a small person in the stomach, so she understood that. She understands much more than people imagine.

MummytoMog Tue 04-Dec-12 15:56:56

We have to avoid the lazy habit of talking over DDs head. She seems to have very little receptive language, but then she has now and then got really upset when hearing something that wasn't directed at her and I could swear she didn't understand. She's a mystery to me so much of the time.

ouryve Tue 04-Dec-12 16:05:23

My nephew was nonverbal at 3 and is now an articulate, confident, wheelin' dealing' 11 year old.

No idea if my sister did anything special with him, but he learnt to read and type before he learnt to communicate with speech, so he started talking already with a firm grasp of the rules.

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