Parents of ASD children - Speech in Infancy?

Hi, hoping to get some views and experiences from other parents of children with ASD. Our little girl is now 2 yrs 2 months old. Officially, she is pre-diagnosis and is due for her Multi-disciplinary Assessment later this year. We have had meetings with the Paediatrician, and all things point towards an ASD diagnosis, which we are prepared for.

Obviously, she is still very young, but we feel it would help us to get the experiences and views of other parents who've already experienced similar to us.

She currently has no words, so no coherent speech. She makes 2-3 repetitive noises, some constantly for long periods. She doesn't really ever mimic us, sometimes when we say "bye" to her, we'll get the occasional "bah" noise, but not the actual word. She doesn't make any attempt to talk to us, and her non-verbal communication isn't good either, i.e. she has never really pointed for anything she wants. She doesn't usually respond to her name, maybe 2-3 times out of 10. She always lacked eye contact as a baby, this has improved slightly but I would guess not to the point of being considered normal. She has good fine motor skills. She was a late walker (18/19 months), she had 'cruised' for a very long time before letting go to walk. She never crawled, and always hated it on her tummy as a baby. Her play seems relatively age-appropriate, and there is no doubting she is intelligent - but very much lacking in social engagement and interaction, which we imagine are stereotypical traits within ASD.

We just wondered, if you're the parent(s) of a child with ASD (or even a now grown-up child), what experiences did you have with speech and language delay (if any)? We've heard stories of some children with ASD not talking until they were 4-5 years old. We haven't heard that first-hand too many times, so would be good to hear from parents themselves.

If your child did have speech/language delay, what things did you do to help/do you feel could help? (i.e. we've tried Makaton, but it just doesn't work with her at this stage). We've done a 'Let's Get Talking' module via the NHS, but it was more about forming strategies for us to encourage speech, but our daughter doesn't seem ready to talk just yet anyway.

As and when your child did start to talk, did they 'catch-up' with their peers, to some degree? Appreciate everyone with an ASD diagnosis is different, but any experiences you can share would be reassuring for us.

Many thanks in advance!

  • my son is 5, was only diagnosed yesterday, and is completely non verbal. he neither initiates conversations, nor is he able to converse. at all. BUT he reads, repeats words like a parrot, says 1 or 2 words when he feels like it, he takes my hands and shows me, or just goes and get things himself. how frustrated am i heh? lol!.

    it took almost 3 years to get a diagnosis. 

    about what i do to help him, my boy is VERY visual so youtube, books, flashcards, etc. youtube because i play educational videos for him every single day for him to learn. thats how he learnt his phonics, words and so on. i know each child is different, but that's what has worked for him. coupled with the fact that he has a brain that forgets nothing. he is also VERY musical. so songs that teach him words were also very useful, i then show him the pictures of the words and he gets it. the way i know he's learnt it is when i hear him say the words when watching the photos or videos. youtube is your friend. 

    sounds really complicated. welcome to my world. :)

  • Hi,  my grandson is now 3yr8months, he didn't say mummy or nanny till 3yr3month. In the last 5 months his vocabulary has grown and he can now say up to 4 words at a time, he tends to pronounce some words from the throat giving a sort of gggggggg sound, hard to explain. Prior to 3yr3month he couldn't say a word despite going through all sorts of visual aids but he is getting there just a lot slower than his peers. Hope this helps you.

  • Hi... I can give you too 3 experiences all very different. 

    I have 4 daughters. 3 diagnosed ASD. 

    One spoke probably fairly typically around the right sort of age as ecpected but didnt have non verbal communications. She spoke with abrupt tones however and misunderstands verbal communication often not picking up on social cues. At age 14 nearly 15 this has not changed much though she has learned painstakingly ways to try and fit in and seemimly manage in social situations. To which she now avoids as it's too difficult... my second daughter spome not a word until she was 7. No eye contact at all until about 9. She now talks endlessly. ....excessively infact! She has some spewch difficulties and limitations which unfortunately the nhs do not recognise as enough to help her as she was discharged some years ago as was said to be borderline within limits and now just left. But her range of vocabularlry and such is limited and immature despite our teaching and she over uses incorrect "big words" once she hears them out of context etc but she has a voice and thats amazing from where she was. She also sings ...on stage... with a voice that is beautiful!! Her pronouncation and articulation only thing holding her back at present.

    Then my 3rd daughter was coherently conversing to a level above expectations of a 3 yr old by age 18months.....then at 3 yr old went selectively mute which she as remained since ....now at age 10 her speech and non verbal communication is very limited and often days fo by where no to lottle engagement at all. 

    So what i would say is take each day as it comes. Enjoy what you have today, encourage what you can for tomorrow and be thankful what you had yesterday.  Each if my girls communication abilities have changed . Theu all have the same parenting. They all have strategies and support. The variable is their individual ASD..... it is different for them all. As parents all we can do encourage and promote good means of doing so.... try visual tools such as board maker /PECS whilst always using verbal along with to encourage, this will help with routine and change too. 

    I always asked my girls to look at me in a calm voice when i want to speak to them first...they dont have too....but its good practice. And so on. 

    Also engaging with speach therapy and other services. 

    Hope this helps and doesn't confuse you further. Incidently my 4th daughter is neurotypical and her speach and communication skills developed differently again. She spoke and used good non verbal skills by an early age and has developed within typical guidelines to this point, now turning 8 in a couple of weeks time and picks up well on inferencing and non verbal cues. 

    Good luck. Xxx 

  • We have some spectacular family histories of speech delays, and rapid catch up...one grandfather didn't speak until 4 then started whole sentences. (Legend says his first words were "pass the butter please")

    I'm wondering if you've looked at baby sign? One reason I think it might help is because you will be beginners at the same time as your  daughter. It will mean you are less likely to try guessing what she's trying to communicate and it will help her have more motivation to try.

    My SD16 had some delay and her Dad has recently realized that everyone was so quick to interpret she just went along with stuff and part of the problem with this is she's not good at expressing her needs.

  • Our little girl could say a couple of things age two, as in name a few animals (speech not clear though) but never really used at words to indicate her needs, e.g. drink or No. Hardly ever answered to her name.

    By 3,  She started using a bit of echolalia.  So she would parrot phrases back she heard on the tv.  We were referred for speech therapy, who referred us for assessment and we had our diagnosis age 3.5.  

    The speech and language sessions were really useful as they concentrated on changing our interaction with our daughter.  Tips included using fewer or single words when interacting with her.  Giving a longer pause after you say something to give her the chance to process the word and respond and if no response, modelling the response for her.  If repeating a question, always repeat exact same words, as otherwise to them they are constantly having to process something different.

    We also went on a communication course run by cahms (HV referred us prr-diagnosis)

    It took a long time to for speech to progress to conversation level and whilst I would love to claim a lot of responsibility, the fact she speaks in a slight American accent, shows that you tube was her biggest teacher Flushed

    She is now a chatty six year old, but is still massively behind her peers, in terms of language understanding and word formation.  But we are incredibly proud of how much she has come on, she now gets genuine pleasure from interacting with other children and talking to them, which is a world away from the none talking and interacting two year old we once had.

  • Hi

    I'm going through something similar with my son, he is undiagnosed however he has a lot of signs of being on the spectrum, he's almost 2 and also has very delayed speech. We have been refused to see a speech therapist even though his GP referred him we have to wait for the health visitor to assess him. The GP said it's because they are trying to save money.

    I would also be interested to see what people reply to you so I can try some things with my son.

    Best

    Felicity 

  • Thanks for the reply Stephen. Glad to hear you weren't held back too much by the sounds of things!

    It would be interesting to know what you were like (speech-wise) at the same age as our daughter (2 yrs 2 months), currently she has no words at all. She makes quite a lot of noises, but these are more like hums, groans and moans rather than actual 'phonics' of proper words. She also blows raspberries quite a lot!

  • I don't think I talked until I was about 3. I was taken for a diagnosis at age 4 (1990) for possible full blown autism, but found not to have that and there was no Asperger's diagnosis at the time. I was put in special needs, but I not only caught up by the time I left primary school - I was actually racing ahead and already reading at an adult level. Broadly excelled academically (ended up just missing out on Cambridge), but not socially.

  • Thank you Daniel, really appreciate your response. We will certainly look into the 'Early Bird' course as and when appropriate.

    As with anything, it's the journey into the unknown for us... Our biggest frustration currently is that our daughter cannot communicate with us (verbally or non-verbally), and she doesn't seem inclined to even want to do so (yet). We just hope that this changes over time, as she is still so young.

  • Our son is 4 and starts school this year. Although he has not needed speech therapy, he was a late starter with talking, and he still does not hold full conversations like others his age, instead repeating conversation parrot like both with us, and even on his own.

    We have been offered a place on the 'Early Bird' course through the Early Years and Childcare team in our county. I believe this is nationwide, but it covers many different types of communication aid, for a variety of levels of communication. The 3 main areas of the program are:

    1. Understanding Autism – learning how children with ASD experience the world.

    2. Communication - how to change communication to help the child’s understanding

    3. Behaviour – understanding why the child behaves as they do and how to respond to this.

    This is for parents and children, and has had a very positive effect on many many families over the time it has run. We are looking forward to starting this, though we will not get to begin till February. It does require a diagnosis, and is aged from 4+, but if this is something you are working towards it may well be something worth looking into for the future.

    Between 2 and 4 years, there will no doubt be more supprt that once you have a diagnosis, your pedeatritian will be able to point you towards, and hopefully you will gather a network of formal and informal support as well. The more you learn about all the help available the more you will be able to be proactive. It is sometimes the case that if you do not chase, you get nowhere fast.

    Stay positive, it sounds like you are on the ball, which is always a good thing!