Positive stores with speech delay - really stressed

[chasingpirates]

Not sure what I’m looking for other than reassurance and to hear some positive stories.

I know all children are different but it would make me feel better as I’m losing sleep and constantly thinking about my DS3 development.

We are expecting he’s autistic. We have an assessment coming up in a few weeks.

He is a gestalt language processor (talks in chunks of language/phrase).

He hashundreds of words and some long phases (up to five or six words) and he uses pretty much all of them in the right context.

He sometimes responds to his name, his eye contact is on his terms, he really struggles to follow instructions. It’s like we’re not saying them. If we say “get shoes on” he might do it but if he wants to go in the garden he’ll rush to get them. If we say “bath time” he’ll run upstairs or “dinner time” he’ll be there straight away so he must have some understanding.

He has zero conversation. He might say something related but never answers. The closest is saying “no” to bedtime.

He has rarely pointed or waved. He has started to line things up and ocassionally spins or flaps his hands but sometimes that’s less than once a day so not obsessive at all.

He’s happy in loud busy places and plays alongside other children but doesn’t really seek out play and if he does it’s more rough and tumble sort of play.

He can count to 10 but I think he’s just remembered the sequence. I think he’s just about starting to recognise colours but it’s very unreliable and possibly coincidence when he’s pointed to one and got it right. He doesn’t sit still enough to concentrate on any of this.

He’s having private SLT which is helping a bit. He’s had a hearing test, that was all fine.

I’m just so worried about his future. Will he ever talk? Will he ever be independent? Will he ever be potty trained (showing no signs yet).

I’m sorry, I know nobody can answer these questions. I think I’ve lost it tonight.

If anyone has any positive stories I’d be so grateful.

Thanks and sorry for the lengthy post!

Our twins had speech delay. Like you I was very worried, we saw a private speech therapist for a long while. I used to wonder if they’d ever be ok. Honestly… they are now in their twenties and I often wonder why on earth I worried and paid for speech therapy because they are absolutely fine. When you’re going through it then it can be very hard - but there are many positive stories like ours.

My son didn’t say a single word until he was 4. Then he started saying some words and now (age 11) never ever shuts up. He was diagnosed Autistic age 7 after being on the nhs waiting list for 3 years. The things that made me consider he may be autistic was extreme aggressive meltdowns, major sensory overloads and what I know now as stimming. He also had global development delay but the docs are happy with the stage he is at now as he seems to have ‘caught up’ with his peers.

He was also diagnosed dyslexic by school age 8 I think.

There is not enough evidence for the GLP approach. See link below.
https://pubmed.ncbi.nlm.nih.gov/38784430/

SLT’s can only provide therapy that is evidence based. GLP approach does not have enough evidence and has been criticised a lot in the literature. See my link in post above

Every kid is different but my child toilet trained years late (literally years) and didnt speak til about 5. Turns out to have been dyslexia and this required a couple of yrs of speech therapy but hes eloquent and never stops talking now, hes a smart little guy too so no long term issues at all. We were told more than once that the very late toilet situation was often something that accompanied this very late speech.

With the flapping my son actually used to flap his hands a few times a week too! We did wonder why but it just mustve been a habit or movement he liked for whatever reason. His eye contact and so on was always great and he was always smiling and laughing so we never suspected autism on the basis of the now-&-then flapping.

One step at a time.
You dont need to worry about 16 when he is 6.
Focus on the next stage next year the best education setting for now...utilise his interests.
He is talking repeating etc.
Find and visit an asd unit or school.

I hear your worry and have two positive stories. My DS now 31 had very delayed speech and therapy until he was 12. He now has a senior role in a company and does lots of presentations. The therapy was great but probably best for him was team sports which gave him so much confidence. My DD 29 is diagnosed ASD. Whilst her speech was good she could not read and then at 11 just got it. She now works for a national charity writing policy and youth development. She does still struggle with some of her ASD traits but has an understanding of what is happening when she is overwhelmed and burnt out. I used to worry so much of the time but they found their way.

Not my personal experience but reading reminded me of this chap:

https://www.theguardian.com/society/2023/jul/11/jason-arday-cambridge-university-youngest-black-professor?CMP=Share_AndroidApp_Other

Obviously quite an unusually extreme outcome but gives hope i think.

On a more personal note my friend has an autistic son. Very classically presenting and was diagnosed very early in childhood. I had privately questioned whether he would ever live independently but I was wrong. At 21 he now has his own flat and is fiercely independent.
My DD is AuDHD. I used to worry as her social and emotional skills were behind her peers. I now get that she is always about 18 months behind her peers on these things but she gets there. And when they are young adults and not developing any more she will catch up and be fine.
It takes ome adjusting as life may not look as you expected but dont lose hope that life can still be good.

I’ve worked as a speech and language therapist with both neurotypical and autistic children, specialising in autism for many years (including diagnosis). It does sound like he may have some autistic traits, and hopefully the assessment will give more clarity. Autistic development doesn’t follow the same pattern as neurotypical development, and the fact he’s using some words at three is a really positive sign.
It’s frustrating because there are no guarantees. Some children, like some mentioned in this thread, go on to develop full language. I once worked with a completely non-verbal seven year old who developed age appropriate language by 12. I’ve also worked with many three year olds who had no words and later developed fully functional language. Recently, a 15 year old in a school I work in, said his first words.
However, there are also children who show promising signs but don’t go on to develop language as expected, even with support.
The most important thing is to focus on connection and enjoyment. If you have a good speech and language therapist, they will guide you in the right direction.

My DD had zero words until a month before her fifth birthday, it also took till then for her to interact with the world…we called it her being in a bubble. Couldn’t pick up a spoon, couldn’t roll a ball, couldn’t do anything assessed by NHS: just basically sat looking at the world. She was also 4.5 before she could walk even a step. Needed a wheelchair for some time. She stayed “delayed” for years though at the same time also showing how immense her skills in some areas were.

She is actually a savant, her skills in mathematics, music and memory are mind-boggling. Her childhood was different to that of her siblings but she had so much joy in her and has always seen the world in a way that I feel privileged to witness. She has a career she adores, and told us constantly from the age of five that is what she would do (very specialised surgeon), and a wife and children.

I can’t tell you what the future will hold, but I hope this has maybe helped to allay some fears. All the best.

If it is any consolation my four year old is mainly only saying single words. We believe him to be autistic. I feel words will come but it is taking ages.

DS2 didn’t speak at all until he was 3 years old. His twin sister was talking way before that. I did have some experience of a late talker as DS1 was far too busy charging around to talk 😁, so I wasn’t too worried. All the professionals were worried though, and I was pushed into an appointment with a speech therapist.

By the time of the appointment, he was talking. Soon after, he was asking me which way blood flowed around the body, and what was the difference between a comet and a shooting star , to which the only sensible answer was “ask your father”. It turns out he has Asperger’s (and he is a remarkable human being).

That doesn’t mean your son doesn’t have an issue that requires professional assistance. I wish you and your son all the best.

Mine does like things up but he is much more bothered about playing with taps or with the locks on gates. Likes lining up cones though. Doesn't flap much either.

I used to teach autistic teens who went to a unit attached to a mainstream secondary school.

many were delayed in their use of language and did not become verbal at all until much later than nt children. Some as late as six or seven.

are you under speech and language?

developing some kind of communication is useful so they can ask for things - baby signing stuff like milk, food, go outside etc. have you looked into makaton or PECS?

many young children do not listen to or obey instructions so I wouldn’t assume the understanding isn’t there because of this.

My son was slow to speak and to be honest there was a time I thought he never would. He had speech therapy but I also spent a lot of time talking to him during his play - basically giving him a running commentary on what he was doing. I tried to focus on his own personal achievements rather than comparing him to others. He had a lot of behavioural issues due to his frustrations with lack of speech and comprehension but went to a mainstream school as well as a part time language unit in reception/year 1. He was diagnosed with Asperger’s as it was then called when he was 6. He is now an adult and you wouldn’t know that he had so many difficulties when he was younger as he has a degree, got a job almost immediately after graduating and is now a qualified accountant. I know it can seem bleak when you’re in the midst of things but try to take one day at a time and focus on what your child can do now rather than looking too far into the future.

My daughter was a GLP for many years. She was diagnosed with autism aged 4. She would say words and little phrases but zero actual conversation. I wrote this post about her when she was 3. From 4 we started to have the most basic of conversations (What is your name?). Now she is 8 and completely age appropriately verbal, I would probably even say a little advanced in some of her language. She's emotionally/socially 'young' due to being ND but I have no doubt she'll be independent as an adult. She's in mainstream school, Juniors has been harder than Infants but she doesn't even have or need a 1:1, just general help from a teacher or TA here and there (which isn't always available, hence why Juniors has been harder. She does have an EHCP but it's very hard to quantify her needs).

Thank you so much for all of these stories. It’s so reassuring and has given me hope.

The hardest thing for me is not comparing or looking too far ahead. I’m not even sure if I’m capable but I need to try.

He’s such a happy little boy and he is progressing on his own path 💙

Thank you so much x

@Happyoverthere Yes it’s only my list to discuss with his SLT which strage he’s at. That will really help me understand his progress.

I am a bit concerned that although he can talk (even though it’s in phrases and odd words) that he doesn’t ever answer questions, ever. There’s no acknowledgement at all. Fingers crossed that develops.

Apparently I didn't say a word until is was 4. Apparently bribed by childminder to say something for 10p My kids all had no more than 6 words by their 3rd birthday and 2 GC who are apparently " delayed" Well one wasn't speaking until 5, now at 7 doesn't shut up and another one is 4 and not on sentences yet

No autism though in any of us

Looking back now, I won't pretend that that life has been easy, but the struggles were more due to mainstream system that wasn't geared up to reach my son's needs and my own inability to process his difficulties. Autism seemed like such a massive label and we struggled to accept this at first. Ironically, both myself and my husband were diagnosed with autism and adhd last year in our 50's. We just had such little experience of neurodiversity back then.

We aren't sure if my husband had speech delay, but he was very late to learn to read. He academically initially, but went on to really find his niche. He has been a highly successful in his career. I should imagine there are a number of neuro divergent colleagues in his particular field.

I wish that I hadn't been so anxious, my son will aways have challenges, but also has some amazing strengths. I treasure what I learned from his unique learning styles and view of the world. His childhood sped past so fast and we had so many adventures. We found so many ways to communicate with him through play and he learned a lot by playing alongside his peers.

I am so pleased that you are feeling calmer, it is such a stressful situation for many parents.

@Thechaseison71 I wish I could bribe mine with something, although he wouldn’t even understand the concept!! Reassuring all in your case did talk and had no issues.

Thanks @Neuronimo I do feel like I’m missing out whilst worrying about all of this.

It’s so interesting to hear stores like your DH. My DH also works in a field where autism seems common. I don’t think he is but he deals with a lot of people who.

We’ve had a few new phrases today so I’m hopefully. They’re from Paw Patrol but he very good at remembering them, no idea if he understands them though!

It's not uncommon for some children not to talk until they 'can do it properly' (by their own standards) then not shut up (😂😂)

I would just keep talking & vocalising his requests (don't just do what you think he wants but say 'ok Fred, so you would like me to get you a drink is that right' (nods or whatever) 'please mummy can I have a drink'

just teach him what he needs to say & TRY not to worry, he will get there.

Good luck with the assessments & getting the help you need x