Positive stores with speech delay - really stressed

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).

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.

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.

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.

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.

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.

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.

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.

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 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.

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.

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.

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.

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

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

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.

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 godson, once he started school, went through the mainstream system but not university; he somehow wangled his way onto a postgraduate journalism course after a few years (don't know how he managed that!)
His mum, having been a primary teacher, had a fairly good idea of how his writing skills should be coming along, and role-playing games with his chatterbox cousin certainly helped! She had, before starting a family, specialised in reading development, but felt he would work his way through at his own pace, which he did - eventually.
We did notice that he would echo turns of phrase from TV programmes which he enjoyed, both when speaking and writing, but I guess many children do that. He found spelling difficult, but was very persistent and self-motivating in mastering vocabulary. His childhood ambition was to be a TV presenter, which seemed highly unrealistic at first, but he seemed to find it easier to speak as if in role at first.
I sometimes wonder if his late attainment of some developmental targets reflects on being born early; he came within a whisker, weight-wise, of being taken into the ICU at birth.

My DS is autistic he had delayed language, started off with echolia. When he got to about 6 his vocabulary started to increase but mostly in reciting tv shows and talking about his interests.
hes 11 now and his spoken skills have increased loads o er past 2/3 years. He can ask questions, talk about himself, he still struggles with nvc and recognising peoples emotions and whilst he can ask other people about themselves he has little interest in doing so.
He toilet trained at 3 in the night and 6 in the day. He’s in main stream working at greater depth though we are not sure if he will stay in mainstream.

No clue what the future holds anything from quirky guy who manages to live independently and support him self to needing significant support for life.
The trick is to live in the present with the child you have and try not to second guess the future. It’s also ok to grieve a hypothetical what might have been but ultimately you have to let go of that and embrace the child you have

His language disorder was flagged at preschool, but we naively signed him up for the local nursery. He received maximum hours of one to one support, from the age of 4 which was 16 hours, back then without a statement (now EHCP I think) The head teacher refused to support us in the statementing process, so we accessed what ever we could privately. in terms of language support.

He spoke early and was combining words at about 14 months, but I am pretty sure, looking back that he regressed. Single words and simple two word phrases by the age of 4, combining and sentences much later I should say, age 6-8 ish from memory.

He did spin and hand flap, but other than trains in a line he didn't line things up. Curiously I did as a child, I have a very late autism diagnosis. He did point and then lost that skill. He'd grab a finger and pull an adult down to play and he definitely did gesture, which I gather isn't something autistic children always do. His autism is described as A typical.

His eye contact was good, but it isn't now. He has learned when it is expected and when it is polite, as we all do. There are some very subtle language differences now, but he loves words and language.

My godson was very slow to start speaking, although he did seem to understand quite a lot. He was prone to meltdowns at the toddler stage when he couldn't articulate his feelings and frustration.
His DM actually homeschooled him briefly, but that was more because a housemove fell through just as he was due to start in Reception, but mum hung on in there, and he seemed to have some sort of lightbulb moment when they finally moved house and began school in the new area. One great stimulus was playing with his slightly younger cousin, as cousin wasn't as adept at second-guessing but loved to chatter.
Once the penny dropped, there was no stopping him. Back in the day, itemised call records came with the phone bills, and I remember when he was a teenager, she ruefully showed me the bill, wondering why she ever worried if he would ever start talking!
He has built a thriving career as a journalist!
Interestingly enough, his DS was exactly the same developmentally, to the extent that his mother wanted to check him out for autism, despite reassurances that he was a "chip off the old block", and happily, he fell into the same pattern, heading for good predicted grades in the upcoming GCSEs.

My son is autistic and had severe delays in expressive and receptive language. It was a shock to us because he had been speaking early and had lots of words. In retrospect he was probably parroting chunks of scripts from favourite tv shows and was echolalic.

He had pretty intensive speech and language therapy up until the age of 9, along side a mainstream primary education. I am not going to pretend that secondary school was easy, but he was absolutely determined to work hard to overcome his challenges. He got good results at GSCE and A level and more importantly is a kind, sensitive and extremely articulate young man.

If I could do one thing differently it would be to tell my younger self not to panic.