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Original poster

Struggling to accept DS 3.5 is likely autistic

138 replies

okroger · 31/07/2026 20:26

Posting here as it’s quiet on the neurodiverse page.

I’ve posted here before but I guess I’m just looking for further reassurance (although still realistic).

I have two older DC 9 and 10 with no ND but my third is looking very likely ASD. He’s a lovely little happy boy but I just can’t keep thinking how different our life might have been if we’d stopped at two DC, especially as the older two are a lot easier now (probabaly in that sweet spot pre teen!) in all family situations I keep thinking about how it would be easier now. It’s like an obsession comparing our lives to what could have been.

I know that sounds awful and I don’t regret having a third (he was very much planned).
I guess our lives are just looking different to what we expected. I also feel concerned it could or already is effecting our other DC.

His biggest most noticeable problem is delayed speech. He finds ways to communicate but speaks in phrases (Gestalt language professor). He’s got many of them and some are very clear but he engages in zero conversation, although he’ll day related phrases to some of what we say.

He struggles with instructions unless they’re routine.

He starts school in sept 2027 which I’m petrified about. I know a lot could change in a year but possibly not enough for mainstream.

He’s having private speech therapy which I believe is helping. He shows no signs of potty training at all. HV said at 3 he was globally delayed.

If anyone else has been in this situation can you help me see what the future could be like? I know of course all journeys are different.

Also aware I sound a bit desperate! (Which I am).

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Original poster
okroger · 17/08/2026 00:31

Spanglemum02 · 15/08/2026 23:42

I can't remember if anything was diagnosed, but he was definately delayed. He got an adhd diagnosis before the autism one.

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Great that he’s been able to pass his driving test and done so well.

My DS is progressing slowly so I really hope he catches up at some point.

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Spanglemum02 · 15/08/2026 23:42

okroger · 15/08/2026 23:37

wow he’s done so well. Did he have a speech or learning delay when he started school?

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I can't remember if anything was diagnosed, but he was definately delayed. He got an adhd diagnosis before the autism one.

Original poster
okroger · 15/08/2026 23:37

Spanglemum02 · 15/08/2026 23:23

Try not to. My DS started school in nappies and i don't think he had a clue why he was there. He did maimstream primary with a 1 to 1 TA and then a specialised base for secondary school.
He is 18, he passed his driving test. He does struggle with a lot of things and I don 't know whether he will work full time, but he has plans for his future.

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wow he’s done so well. Did he have a speech or learning delay when he started school?

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Original poster
okroger · 15/08/2026 23:37

Mooseylooseyloo · 15/08/2026 23:07

None whatsoever anymore. I mean i have a 17 year old who helps when he can but my mum is too elderly now. Waiting on a social services assessment soon.

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Really hope that you get some support soon. It must be really hard with it all on you. Sending love

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Spanglemum02 · 15/08/2026 23:23

okroger · 15/08/2026 22:54

I do need to stop looking so far into the future x

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Try not to. My DS started school in nappies and i don't think he had a clue why he was there. He did maimstream primary with a 1 to 1 TA and then a specialised base for secondary school.
He is 18, he passed his driving test. He does struggle with a lot of things and I don 't know whether he will work full time, but he has plans for his future.

Mooseylooseyloo · 15/08/2026 23:07

okroger · 15/08/2026 22:53

I’m so sorry. That sounds really tough. Have you got much support? X

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None whatsoever anymore. I mean i have a 17 year old who helps when he can but my mum is too elderly now. Waiting on a social services assessment soon.

Original poster
okroger · 15/08/2026 22:54

Spanglemum02 · 15/08/2026 22:38

My DS is autistic. What I found was that mainstream nursery and reception had children with a very wide range of abilities. It might be that mainstream is not for him or at least not after a few yrars but you don't have to decide everything yet.

I do need to stop looking so far into the future x

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Original poster
okroger · 15/08/2026 22:53

Mooseylooseyloo · 15/08/2026 22:46

My son is 14 with ASD, OCD and a learning disability and life is hard. He was an angel growing up but hit puberty and its been a nightmare. I also am scared of the future and I miss my life. Sorry i cant be more positive. Every child is different but I also think like you, what if I just stopped at one, how different my life would be.

I’m so sorry. That sounds really tough. Have you got much support? X

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Mooseylooseyloo · 15/08/2026 22:46

My son is 14 with ASD, OCD and a learning disability and life is hard. He was an angel growing up but hit puberty and its been a nightmare. I also am scared of the future and I miss my life. Sorry i cant be more positive. Every child is different but I also think like you, what if I just stopped at one, how different my life would be.

Spanglemum02 · 15/08/2026 22:38

My DS is autistic. What I found was that mainstream nursery and reception had children with a very wide range of abilities. It might be that mainstream is not for him or at least not after a few yrars but you don't have to decide everything yet.

Original poster
okroger · 15/08/2026 22:36

Sunnibee · 15/08/2026 08:48

Hi OP, I know exactly how you feel- I am going through the same cycle with my little one. She sounds similar to your son, except she already has a diagnosis. I try to remember she's so little still and she is making progress even if it's not the same as a neurotypical child at the moment. It's the apparent lack of receptive language and what I am saying that worries me the most, but so many people have pointed out that she probably does understand a lot more than I realise xx

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I feel for you. It’s a horrible feeling.
they must know more than we think. DS often does something that surprises me.
He did see a number five today and shouted “5” which is massive progress for him 🙌

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Original poster
okroger · 15/08/2026 22:33

LivelyGreyShark · 15/08/2026 00:25

I remember when DS was 3 I was terrified he would never be able to communicate, he was stung by a wasp in the garden and wasn't able to tell me where it hurt because he was non-verbal with no understanding of language or communication, thankfully DD saw - my point is I was so scared for his future, but it turned out better than I could have hoped for. My DS could not have pointed on demand let alone pointed out a colour at 3.5, but around aged 5 he really started to catch up.

Thank you, that’s good to hear. It’s so scary not know what he might be like in the future. So hope he can catch up a bit within the next year.

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Original poster
okroger · 15/08/2026 22:32

SummitWrong · 15/08/2026 10:38

If you're on social media, this person is worth a follow

Thank you, I’ll follow them x

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Original poster
okroger · 15/08/2026 22:31

ifonlytheydlisten · 14/08/2026 23:27

Comparison is the thief of joy too. He’s very young still

So true! I need to be better at catching myself doing this

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SummitWrong · 15/08/2026 10:38

If you're on social media, this person is worth a follow

Struggling to accept DS 3.5 is likely autistic
Sunnibee · 15/08/2026 08:48

okroger · 14/08/2026 23:23

@Strawberrycheesecake7@ifonlytheydlisten
thank you. He probabaly does know what I’m saying. It’s like he’s too much his own little world to focus. I’m not sure what’s happened to me today. I’m finding a pattern where I’ll go a few weeks feeling ok ish and positive and then I drop off a cliff for a few days and only see the negatives. Thinking rationally I know he’s making progress even if it’s small things.

Hi OP, I know exactly how you feel- I am going through the same cycle with my little one. She sounds similar to your son, except she already has a diagnosis. I try to remember she's so little still and she is making progress even if it's not the same as a neurotypical child at the moment. It's the apparent lack of receptive language and what I am saying that worries me the most, but so many people have pointed out that she probably does understand a lot more than I realise xx

LivelyGreyShark · 15/08/2026 00:25

I remember when DS was 3 I was terrified he would never be able to communicate, he was stung by a wasp in the garden and wasn't able to tell me where it hurt because he was non-verbal with no understanding of language or communication, thankfully DD saw - my point is I was so scared for his future, but it turned out better than I could have hoped for. My DS could not have pointed on demand let alone pointed out a colour at 3.5, but around aged 5 he really started to catch up.

ifonlytheydlisten · 14/08/2026 23:27

Comparison is the thief of joy too. He’s very young still

Original poster
okroger · 14/08/2026 23:23

@Strawberrycheesecake7@ifonlytheydlisten
thank you. He probabaly does know what I’m saying. It’s like he’s too much his own little world to focus. I’m not sure what’s happened to me today. I’m finding a pattern where I’ll go a few weeks feeling ok ish and positive and then I drop off a cliff for a few days and only see the negatives. Thinking rationally I know he’s making progress even if it’s small things.

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ifonlytheydlisten · 14/08/2026 21:56

I think just changing how you see their future postively can help. My DD is very bright but her future will be in a practical career not something like law or one needing high academics such as medicine due to her neurodiversity. I work with loads ND people in civil service.
If confirmed ASD then focus on the cans not the can nots

Strawberrycheesecake7 · 14/08/2026 21:39

okroger · 14/08/2026 21:20

@romdowa thank you. I’m glad things have improved for you your son. Sounds like he’s doing great.
can I ask what his understanding was like at 3.5? I’m panicking again today. Just feeling like he’s so behind 😔 he can’t even point out a colour. Doesn’t even respond.

It’s possible that he understands far more than he’s able to communicate. My son wouldn’t be able to point out a colour either. Until recently I thought he had no concept of what colours are. The other day he randomly brought me a purple stickle brick and confidently said ‘purple’. He wouldn’t be able to communicate to me which colour was purple if I asked, but he clearly does know.

Original poster
okroger · 14/08/2026 21:20

@romdowa thank you. I’m glad things have improved for you your son. Sounds like he’s doing great.
can I ask what his understanding was like at 3.5? I’m panicking again today. Just feeling like he’s so behind 😔 he can’t even point out a colour. Doesn’t even respond.

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romdowa · 14/08/2026 14:27

My autistic son is nearly 5 and with each year things have gotten easier. He now has full speech, although not always great at communicating, he is toilet trained , sleeps in his own room and starts mainstream school at the end of the month. His main difficulties now are sensory issues and regulation. His motor skills are also delayed but that is now more than likely due to dyspraxia. My advice is keep going with the speech therapy and try and see an ot. I found 2/3 the most difficult ages

Original poster
okroger · 14/08/2026 14:24

@PeanutCat1 wow that’s amazing progress! I know what you mean, my DS is the same and going his own pace. Seems to be usually about a year after typically expected at the moment x

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Original poster
okroger · 14/08/2026 14:22

@changedusername190 thank you, such good points. I guess it’s the unknown I’m scared about with regards to special school. I’m so new this the SEN world, I’m finding it really overwhelming to work out all the processors and even just the acronyms are confusing!

Really just want what’s best for him though 💙

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