Autism and speech experiences

[meg1209]

Hey all! Just wondering if anyone had any experiences with their little ones with autism and speech difficulties.
My son is 19 months and going through diagnosis now, he can’t say words properly but will babble a lot and talk to us in gibberish almost. I’m hoping as he is still young there is still time for his speech to develop but obviously with the potential autism I’m worried he may never speak.
Has anyone gone through this? Did your little ones catch up with their speech or always struggle?

Thanks x

Disagnosis for what? 19 months seems way too young for a autism assessment?

My grandson is being referred to a community paediatrician after his two year check, and autism is being flagged up as a possiibilty..

He is non-verbal. He does not point or babble or make indistinct noises that are attempts at speech. He does not signal in an attempt to communicate his needs, although he will make happy 'Mmm' sounds when eating and may also do a kind of hissing/growling if angry.

From what I have read there will be many reasons why a child may be speech delayed. (Glue ear for one. Not so much socialisation during lockdown being another.)

While you may feel anxious or worried, there is plenty of time and the fact that he is obviously communicating to you in his own way - pre-verbal rather than non-verbal - is a real plus.

He is going through speech assessment and is waiting for an initial autism assessment. He is showing a few 'signs' of autism. I know it's age of diagnosis is a topic that differs opinion but this is the path we've been advised on based on his 'signs' at this age.

Hi, thanks so much for replying.

My little ones loves to 'mmm' when he eats, it's lovely!

He does take our hand to things and gives us things so we play with him etc. he communicates in his own way for sure!

Speech is such a complicated thing for children! I just worry he will never speak xx

My DS was diagnosed a month before his 4th birthday. His first words were at around 2. He used a limited number of single words for a long time - but over the last 12 months (he's 4.5 now) his speech has come on hugely. He speaks in 5-7 word sentences, chatters all the time about his interests and now he can talk more we get to see his brilliant sense of humour

My dd was diagnosed the week of her second birthday. Her path to diagnosis went like this. Referral to paed at thirteen months after losing all previous gained skills could no longer smile, wave, laugh, say the few words she had. Paediatrician ordered chromosome tests and tests for metabolic disorders. When they came back clear he referred her for a multidisciplinary assessment and diagnosis at just two when developmental wise she was 9 to 12 months. By the time she was two and a half she was catching up fast, she acquired speech mostly through echoing what she had heard so she had a mixture of accents copying everything from Ballamory to Disney to radio four. By three she had her own speech, she sounded like a BBC newsreader and had a wide and varied vocabulary. She's 19 now and very articulate but formal testing shows she has scores ranging from top of the scale to just within normal limits. She struggles with processing and memory so has to work really hard to hear understand and remember in conversation but to an untrained eye she has perfectly normal speech.

Thank you so much for this! It's so nice to hear progress can be made. Did you ever attend speech therapy? Did you find anything in particular helped encourage speech? Thanks again xxx

That's amazing the progress your DD made! Must have been so scary at first though. My DS hasn't been through any sort of regression, just lack of eye contact etc. from around 10 months.

Do you find your DD has struggled in any other areas? How is she doing now?

Thanks for replying, I really appreciate it! Xxx

DS was diagnosed at 2.

he is 8.5 now and has a wide vocabulary but is still classed as mostly non verbal.

all his speech is echolalia, so he can recite to himself an entire episode of peppa pig / songs songs to himself / repeat back what I’ve said to him but cannot ask for a drink or use that speech in any sort of conversation format.

he does have a few words that he has learnt to use, but these a very basic.

very frustrating when he can talk… he just won’t talk to anyone.

She is wonderful tbh, she struggles greatly with anxiety so bombed out of mainstream secondary but has attended an independent specialist school very happily. She's intelligent and kind loves languages taught herself Japanese and is pretty much fluent in French, she's always had a small friendship group and is a good friend. She has never had any behavioural difficulties. She leaves her school this summer and will study A levels in Maths English and French and then thinking of university.

Ds wasn't talking at 2. He was referred for speech therapy and saw the therapist for about a year. He started pre school with some speech but not easy to understand. He had pretty much caught up by the time he started primary school, but did not really speak there for the first year. Problems were flagged but not taken seriously as he was meeting academic milestones.

11 years later at the age of 15 he was diagnosed with autism. I wish somebody had picked up on his traits when they were assessing his speech as a toddler. He is nearly 18 and has communication difficulties now, but his language and speech are okay.

DS did not develop any normal speech at all, after having a regression at 14 months and losing the words he had. ABA therapy combined with speech therapy gave him a naming vocabulary and the ability to express basic needs between four and six. At seven he was diagnosed with FRAA and therefore a cerebral folate deficiency. (If you google folate receptor auto immune antibodies the research papers come up quickly, but the test is only currently available privately). Supplementing with calcium folinate and going dairy free has given his language an enormous boost, he can now express himself much more clearly and has a grasp of more abstract concepts. If we had known about this earlier the research indicates that he would have had a better outcome from the treatment. We get this treatment on the NHS but it seems to depend on your team if they are willing to do this. Calcium folinate is expensive for an individual to fund privately. In the US it is becoming much more readily available . Feel free to PM me if you or anyone wants more information.

My 6 year old was initially referred to the speech therapist at 21 months old and at 2.5 was referred to the paediatrician.

He got his autism diagnosis just before his 6th birthday.

He was very difficult to understand and spoke very few words until around 3.5/4.

Now he definitely never stops talking 😂 he is an absolute joy and I am so proud of him!! His school have been fantastic (he attends a mainstream school).

We still have speech and language therapy now. At your sons age our SALT said to narrate everything in very simple language - only one or two words for example DS walking, DS eating etc. We did this for months and then some single words started to appear. For a while it felt as if he wasn't taking anything in, but he did eventually start using words. The other thing our salt said was to focus on one or two functional words and try and use them often, for example 'more' and 'finished' whilst signing the words too - so that they can learn to communicate their wants/needs.

My DS was also diagnosed at 3. He used to babble away for ages too, and also had echolalia.

After speech therapy 3 times a week for 9 years, as a 13 year old, we can't shut him up! He is also bilingual, we speak English at home and he goes to school in a second language. We chose to do this (all therapies in second language), and it has paid off. He is also in a specialist school, and this helped enormously as therapies were done in house (as opposed to me driving him and his siblings around every day for the first 5 years!).

I know where you are right now is hire scary and a crystal ball would be helpful. I hope that your DS gets the help that DS did.

My son is still non verbal at 3.5 - he makes a range of noises but no words. He was diagnosed privately at 2 then NHS at 2.5. He presents with quite "classic" autism if there is such a thing. He's a beautiful soul and full of joy... However we do have many challenges with him. SLT is still very basic as that's where he is at the moment, I find it rubbish to be honest.

DS was diagnosed at 2 (a few months before he turned 3)

His speech initially seemed to be developing typically for a baby in that he gained a lot of words but he stayed at that level for a long time. He had loads and loads of words but no idea what to do with them! I was an SEN teacher before he was born so knew a few things and made him a communication book based loosely on PECS (which I'd been trained in on their two day course when I was teaching). We'd also been signing with him since birth which he understood but didn't really use himself that much.

His book had loads of symbols of food, toys, photos of people in his life, places, 'help' type symbols (feeling poorly, somethings hurting, something's too noisy or too sticky etc). Then I'd give him opportunities to communicate basically so rather than him screaming and me realising he probably wanted a snack I'd get him to use his book to show me what food he wanted and model the language he needed to use.

Also lots and lots of play commenting on what he was doing without asking questions-this is really tricky to do because it's our natural instinct to extend play by asking questions! Loads of reading together as well, commenting on what I was doing, basically narrating our lives!

After a while his speech extended to copying scenes from favourite films and tv programmes in his play (Lightening McQueen featured heavily!) To an outsider it looked like he was talking loads but if you know the film then you know it's lifted verbatim from the script.

Eventually he started putting together his own little phrases, these got extended more as he started to understand more what he was supposed to do with words and this was enhanced by his speech therapy (that he'd started receiving by this point along with his diagnosis and subsequent EHCP) focusing on something called Shape Coding, where each part of a sentence is written down in an assigned shape eg verb is always a triangle, noun is always in a circle etc (I hated this because I'd used a similar system when teaching but it was with colours and I kept wanting to do this instead because the colours were automatic for me!)

He's now 8 and chats away and his therapy focuses more on the social aspects of conversation and the 'give and take' of listening and responding. He has a very quaint turn of phrase sometimes which is adorable.

Your child is still very very little. At the moment just focus on the quality interactions and play and narrating what you're doing. With the assessment will come support hopefully and they will come up with the best plan for his individual needs.
Even if your child doesn't 'talk' with words, speech therapists are wonderful people and they will find a way for your son to 'talk' to you using a communication method that will be just as clear. You will be able to understand him and what he needs and feels. He obviously gets the point of communicating (taking you by the hand and leading you somewhere is communicating and 'talking' to you in his own way right now) so that's really positive!

My son is 29 months and on the waiting list for autism assessment. He had a few single words before 18 months but not many and none stuck around. He said mama for the first time at 23 months. He had a lot more single words around 24-27 months and now is saying some phrases. Lots of echoed speech still and pronunciation is not clear but lots of progress.

Lots of 1-2-1 play with repetition has helped, taking his lead and doing it his way (if he’ll let me). Plus adding a few words that fit his play (e.g., “ready, steady, go” or “kick” or “bounce” or “more bounce” etc. )

My son was diagnosed at 7. He had speech therapy when he was little, he made sounds but they were all vowel. He also didn't point or copy hand actions for songs. He knew what he was saying but nobody else did!

He was discharged from SALT aged 5 after lots of progress as his speech was considered to be within normal limits.

He is 14 now and one of the most eloquent speakers I know.

Hey

My son didn't talk at 19months either, we started getting words at just turned 2.
Now he's 3 and says all sorts.

We're still on the pathway for a diagnosis but I remember that feeling when he was the same age as your son.

Best advise I got was to repeat one word three times but in different sentences and really exaggerate the one word;
X look at the big bus
Look how quick the bus is going
The bus is red

And singing! Lots of singing.

We still have speech therapy but compared to just over a year ago it's a massive difference.

Does your son go to nursery? Or will he be going?

Ds was diagnosed at 3 years, started the pathway at 22 months.

He was non verbal until 3.5 years, his speech started with his special interests, so car makes. He could list every car brand but wouldn't say mummy 😅he had some words which were his own and used them regularly for items. When non verbal we used PECS and makaton to communicate, plus just as a parent understanding each noise, hand movement and facial expression. Around 2.5 years he learnt to take our hands to guide us to what he wanted, he also learnt to wave which was a big deal. I actually remember the date he first waved back to someone!

Over time his speech has progressed immensely, and now at age 5 he's speaking in sentences, able to get his needs met and explain his thoughts in simple, although sometimes muddled, sentences. He's still under SALT and definitely needs their guidance, his TA at school does daily sessions with him to help practice from SALT goals and advice. He spent a long time using echolalia as main communication, it's less so now but still a bit part of his communication. He still uses visuals and makaton to communicate and comprehend situations, some is almost so core to him that although he'll use his speech he'll still sign at the same time.

DS (diagnosed at 3) said his first words at 14 months, lost them by 18 months, developed his own language for a while (that was a fun stage), was speaking indistinctly at 4, still missing some consonant sounds at 5.

He then developed a stutter which came and went, but faded away by 12. He hasn’t been assessed recently but would appear to speak within normal limits.

I never had problems understanding him - he was actually quite a good communicator despite his speech. I think that helped keep him from getting frustrated, and gave him space to develop at his own pace.