ASD will my DS talk

[mompa]

Hello I am looking for some hope that my DS will talk and be able to hold a conversation. I am so sad he can't sommunicate with me.He will be 4 in december and is starting a maintained specialist ASD Nursery in Sep. He can say hello and Mummy/Daddy and can count to 5 when he wants and has labels eg cat, train, cacr etc but no functional language. Did any of your ASD childrens speech take off a bit later eg 4 years old? He was at private ASD nursery for past year but no progress with regards to speech

My DS was at that level when I went on a PECS course run by Pyramid. I learned a lot about motivation to talk and that talking isn't actually the skill that the child needs, but to 'initiate' interaction.

Although I do not, and didn't much even after the training, use PECS, the skills that I learned on that course has been the most significant and important learning I have had on my ds' journey.

And yes, my almost 5yr old can hold a conversation. It's not a comfortable, flowing type and he finds it hard to talk about anything that isn't on his terms and agenda, but I can explain things to him, and he can ask questions, and express himself enough for me to look after his happiness.

Hanen was also good too and the comibanation of skills helpful.

Thank you so much - that give me some hope. I am being pushed to use Pecs but still don't feel its right for my DS. Have done early bird. Will revisit Hanen and look into Pyramid. However motivated DS is he will not talk on demand. His nursery also saw this and commented that the more motivated he is eg really really wants balloon, raisins etc the more difficult he find it to say the word even though he can when he wants to? It is a monumental effort on his part and he just doesn't get that saying the word will get him the reward. That link is not there for him at the moment

Mompa, go on the PECS Pyramid training and make the decision after that. There is nothing like properly applied PECS and properly applied PECS is pretty rare and when it is done inadequantely outragously inappropriate and rubbish.

Your ds will not be using PECS for very long. With his language, possibly just a week or two. It's what it does to take the child to the next level of interaction/communication, to show what is available with language, and to teach the skill of sharing something and of directing requests TO someone.

It has NOTHING to do with being a visual learner, or needing visual supports or anything like that.

Oh I see that makes far more sense now. Thanks so much will look into it now

My DS was very similar to yours at 3.6. He used PECS (properly) for about 6 months, but in the first few weeks made a lot of progress. It was that motivation to communicate (not speak) initially that really worked.

I also had the Hanen book, More than Words, recommended by the SALT, which was my bible! Cheapest source here that I can find.

DS (11) now can speak and has really good comprehension. Still struggles with reading between the lines and has a squeaky high pitched voice. But he just passed his Y6 SATs in MS school, so there's lots of hope. Even if he does talk mostly about his current obsession.

Meant to say, he had a bit of a talking leap when he was 4, after the PECS and with Hanen.

Thanks so much have ordered More Than Words and PECS starter Kit from Pyramid. Hope to go onworkshop too

That's great. Hope you love More than Words. I'll feel a bit responsible if you don't.

Hang around here, it's a great source of friendly chat and advice from people who really know what it's like, many at the same stage on the journey as you.

It really is the workshop that is invaluable.

Don't make the mistake of BUYING lots of things, that so many of us do as it can seem an easy way to fix things. Often successful techniques require very little THINGS but unfortunately they do require time and work.

Great, that it gives you so much power to make a difference, but hard because of the burden that then places on you.

The Hanen books (apart from the expensive book in the first place) don't require you to buy anything, but to look at the environment differently and use it better iyswim.

Thanks both of you. I really do need to start to put the time in to helping DS myself. He is such hard work - constantly on the go. Huge meltdowns when he does not get his way or if something goes wrong or something unexpected happens eg Charlie and Lola DVD stops playing. I am on my own with him most of the time and every weekend just me and him (DS Dad and I are separated). I also work full time to pay mortgage and feel guilty that I am not there more often. I have managed to get statement and specialist placement in September and 20 hours one to one in holidays but know I should do more myself and on the plus side he is now fully toilet trained day and night - he amazed me by achieveing this!!

mompa, there isn't one of us that didn't wish we could/were able to or sometimes were even more inlclined to (if I'm honest) spend more time with our dc's helping them etc.

I didn't say that to make you feel bad and now I feel awful.

I think the point I was trying to make, was by learning about and skilling yourself up, you can alter the way you parent to some extent, so that it is easier for you all and so that your ds can learn simply from being with you.#

It sounds like you have achieved an incredible amount already in both helping him and getting support from agencies.

Oh just seen this Starlight - you have absolutely no reason to feel bad. I'm really grateful you pointed me in the right direction and for your very useful advise. Thank you for your kind words.

ds2 didn't have any functional language other than yidyo and no until he was almost 7. He had speech (could recite his times tables and say the alphabet) but it was nothing more than a party piece

School always told me that at 7 we would have a good idea about the way things would go. Now 15 and he can hold a conversation with anyone albeit not using a complex vocabulary. He isn't always grammatically correct and often uses made up words but can be understood pretty easily by strangers.

For us the break through came with music therapy. We sang everything and eventually ds2 sang back. Its been so influential in getting him to communicate we have it in part 3 of his statement.

Hang on in there - agree with others re pecs being a great resource.

Mompa- I was thinking the same about my ds, he will be 4 in Jan and although he can label so many things, he has no functional language. He can't even respond 'no' to a question.

I am desperately trying to potty train him but have not got success. Have you got any tips?

Hello eatyourveg - yes we are hoping music therapy will help - have been trying to get LEA to add to statement with no success so far. DS has had six weekly session so far and will start again in Sep. Is your DS2 at Special School?

bee169 my advise is to skip the potty and go stright to the toilet. Take him to the toilet every hour or so. We also used pictures - particularly a fairly graphic one my DS Dad drew!! I will try and PM it to you. Persevere and once he does go on the loo make an enormous fuss of him and reward straight away.Also let him see your DH and you on the toilet so he underatands!! This is how we did it though I know it will not work for everyone. Also did not react at all to accidents.

Iknow what you mean my DS can in no way respond to a question. Does not get it at all. Maybe try giving choices eg Banana or yoghurt, Peppa Pig or Thomas and show him the choices. Best of luck

yes ds2 is at special school. About to go into Y11 he has had music therapy in his statement since it was drawn up when he was at the special needs nursery. Its been a battle and twice when the LEA have tried to take it out ,I have had to threaten tribunal. They have backed down twice albeit at the 11th hour. He's the only one in the school to have it!

6 sessions may not be enough to prove to the LEA that your ds needs it in order to progress. Keep going though because it can be done.

Have you read this? Its quite expensive but you can get it cheaper at Abe Books

hi mompa, I'm coming a bit late to this thread but I just wanted to ask if you've ruled out verbal dyspraxia too? My ds has autism and is just starting to use sounds to communicate at age 3.5yrs but we find that he can use some spoken language for labelling things and repeating words that you say, but when it comes to asking for things he wants, he gets so frustrated that he is unable to say the word.

Ds doesn't have a dyspraxia dx yet, but I've heard this problem is often connected with dyspraxia, i.e. the more pressure he feels under to say the word, the worse it comes out. Words can also 'pop out' perfectly once and then can't be repeated.

We used pecs and then moved to makaton, and are still using makaton now, because if he can't do the sign we can prompt the right response from him using hand over hand (whereas it is impossible to prompt a vocal response).

Hth

Hello JoMaman - will definitely look into verbal dyspraxia. Is this diagnosed along side ASD.?Who would be able to advise this/diagnose this? SLT's so far have not mentionned it. That is exactly what DS is like gets so frustrated when he wants something that I know he can say the word for that he just screams and cries. Home starter kit for PECS arrived with DVD and manual how to use it today. Cant wait to get started and hopefully go on worshop. Thanks so much for taking time to respond

hi Mompa.

Dyspraxia can definitely be diagnosed alongside ASD and they often occur together. As far as I know, it would be the SLT who could diagnose, but it takes ages to get a dx as they have to rule out other causes for the lack of speech and if there is also an ASD dx this can make it difficult.

There is a nuffield dyspraxia centre which specialises in this, but in order to get a referral you need to meet their criteria. My ds currently doesn't have enough language or attention span to attend the test that they do.

I was told by various independent SLTs that we should work on his communication from the motivation/functional communication side (i.e. PECs, makaton etc) for his ASD, but also assume he has dyspraxia and treat accordingly. This might be because ds presents as v dyspraxic, e.g. when he tries to talk his mouth makes groping actions like he is trying to get his brain to make his mouth work. He has said "bob the builder" perfectly on occasion but mostly can only say "baba", he also has motor planning issues with his gross and fine motor (doesn't always go with verbal dyspraxia but can do).

For dyspraxia there are lots of different strategies and not all of them work for each child but here are a few of the things we have done and have found successful:

• talk tools (we needed a talk tools trained SLT to get us started with this). Its early days but so far it has increased his breath control and his lip control.

• cued articulation (all you need for this is a DVD and 2 books which you can get on amazon). i'm told it is out of fashion in SLT circles at the moment but it really helps ds. Each sound has a hand signal that corresponds to what your lips/mouth/tongue do to make the sound. The visual representation seems to cue in my ds to making the sound. We videoed close ups of ourselves making the sounds and he suddenly could make sounds he'd never done before.

• increasing his phonological awareness. my ds couldn't repeat back any sounds that we made to start with, but had good receptive listening skills, so we taught him the phonetic alphabet and he ended up liking letters so much that he would point to them and say their sound. We used Jolly Phonics system, you just need a song book and CD to start you off, and if you want visuals a SLT can usually give you some flash cards, or I made my own by chopping up the wall frieze and laminating it.

I'm not sure if any of this will be helpful, and I'm no SLT so please check what your SLT thinks! hth

can anyone tell me where to get / how to access music therapy? am in sticks a bit where we live. is there any in glasgow?

my son is 5 and i cant ever imagine him talking. he makes a LOT of noise. but although he can say "mum" he has never used it appropriately. its just a noise he makes. with all that noise, something's bound to sound like a real word!

yogabonkers - you can try : APMT BSMT Official Website for The Association of Professional Music Therapists and The British Society for Music Therapy. I emailed them and they gave me a list of registered music therapist.

I also e-mailed/contacted music therapists who worked in the special schools as a friend managed to get one that way.

I have to admit that I have not had any success as all the music therapists within half an hour's drive do not have vacancies.

Yoga try Nordoff-Robbins Scotland, they have a centre in Glasgow IIRC. They are the music industry charity and very involved in music therapy.

OP hope you get on well with PECS and the Hanen book, ask your SALT if the Hanen workshops are available in your area, they are brill. Good luck.

Hi, my dd2 was non-verbal until 3.5, we thought she would never speak, she was reffered to a sn nursery through SALT, they started PEC's with her which gave her a way to communicate but the speach was not really improving, she then started music therapy at nursery and after 2 sesions she started to sing and eventually talk. She's now 5 and still behind with language but its now more a problem of 'she doesn't feel the need to talk' rather than 'not being able', she can speak very clearly when she wants to (often to ask for food or a toy) but struggles to hold a convosation, she has now learnt to read which has really helped because she can now cummunicate through reading and writing.

I would reccomend PEC's (but it doesn't suit every child), i would also reccomend music therapy or Art therapy.

hi yoga - i am in glasgow too. I will look up address of music therapy place in Govan I think ? I didn't use it so can't say what it is like

Hi Mompa. My DS had a similar level of language at 4 ( but without the mummy and daddy - that came much later!) PECS really kickstarted his ability to request in exactly the way that Starlight outlines and we followed it up with an ABA/VB programme which really helped him to request a wide variety of things. Now, at 8, he can ask for almost everything he wants using single words ( will use a sentence but only if pushed!) He has stuck at this level for some time though, mainly due to his huge difficulties with sequencing ( words or actions) and some word retrieval problems. He very rarely uses language to comment. I am hoping that he will continue to make slow progress, but with him, moivation is all. He can learn a new word for something he wants in five minutes, but trying to get him to say ' I like chips', 'Its raining' or 'Hello Mummy' is like getting blood out of a stone! He can repeat the phrases, knows what they mean, but seems to feel theres no reason at all for him to say them spontaneously!