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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).

OP posts:
Sunnibee · 01/08/2026 21:31

I'm also navigating similar to the OP. Thank you all so much for your incredible perspectives . It's brought tears to my eyes xx

Original poster
okroger · 01/08/2026 21:27

@Cantwaitforwinter I do worry about DS not following instructions. He knows “time to go”, “upstairs for bath”, “going to the supermarket” etc but anything new he just doesn’t understand, either that or he just doesn’t do it and is choosing not to do it, I’m not sure. Sometimes he just seems too much in his own little world to take it in!

He can count to 10 and I think I recognises some written numbers but wouldn’t know how to pick out 5 of something for example.

OP posts:
Original poster
okroger · 01/08/2026 21:24

@clareykb lovely your DD is doing so well. I have noticed DS also has a very good memory, maybe no different to my other DC at their age but it’s something I’ve picked up on. Hopefully this helps with school.

OP posts:
Original poster
okroger · 01/08/2026 21:21

@24Dogcuddler Thank you. Just what I need to hear. I’m not sure why I’m afraid of special school because I know if it’s right it’ll of course be the best place for him. Who knows, in a year he could progress more than I expect and be ok in mainstream.
You’re right, it does feel like a bit of grief for what might have been. Good point about my other DC, they are already so caring and patient with him. I think they’re only just starting to notice he’s different to other kids his age.

OP posts:
Original poster
okroger · 01/08/2026 21:17

@Sonolanona such a lovely story of progress and it sounds like he’s so lucky to have you. This gives me so much hope!

OP posts:
clareykb · 01/08/2026 15:16

My DD was diagnosed at 7 but there were signs at 3.5 esp with language she has an EHCP but is thriving at a mainstream secondary school. Academically she is averagey but has a brilliant memory so does well at history which she loves and is a brilliant dancer and competes/is in shows etc...because she can copy and learn a routine very quickly!

Cantwaitforwinter · 01/08/2026 15:12

I should add, if I had the choice to go back 8 years and have my son not be born autistic, I honestly wouldn’t. It may sound cruel from a perspective of the child’s life but he’s taught me so much, influenced my life as a mother and I wouldn’t change him for the world, he’s not missed out on any opportunities, attends every family gathering, school trip and activity, he loves sports day, group activities, gets on great with his younger sister, is kind to animals, has many interests and goals. I don’t believe he’ll miss out on anything in life

Cantwaitforwinter · 01/08/2026 14:52

okroger · 31/07/2026 20:56

Thanks @Cantwaitforwinterthat’s great he does so well. Can I ask what he was like at 3.5? Did he understand instructions? X

Sorry for the late reply.

He’s always understood instructions, following them is another thing.
At 3.5 he was very typically autistic, lots of stimming, repetitive behaviours and pattern following. One thing we’ve always known is our child isn’t dumb because of his autism, it’s a common and unfortunate misconception, autistic children are insanely intelligent, they just struggle with processing emotions and everyday situations, never assume they don’t understand.

Mumtobabyhavoc · 01/08/2026 01:52

Could this help?

www.autism.org.uk/what-we-do/support-in-the-community/family-support

24Dogcuddler · 31/07/2026 23:29

Try not to look too far into the future as it can be scary and overwhelming.
Our youngest DD was diagnosed at 3 1/2 with autism and SPD later ARFID. We were told don’t rule out special school.

She attended mainstream with support and achieved academically at the highest level. Every child is different. Early intervention is so important.

Please don’t be afraid of special school. Most are wonderful places. I taught in an Outstanding Special school then was an advisory teacher/manager in an Outreach service based there.

Right now you will be grieving for the child and life you thought you would have. Be kind to yourself and give it time.
He will make you smile and impress you every day as I’m sure your other DC do. Maybe having him in their lives might shape their future careers?

Try to embrace your new path. Join parents groups if available. You will meet parents who understand. Post diagnosis you should be offered a post diagnostic Programme such as Early Bird EarlyBird plus.
I’m not trying to Romanticise it all. There will be lots of tears and challenges but you can do it.

Sonolanona · 31/07/2026 23:26

My DS2 was non verbal and happily lining up crayons in a corner at 3. Had a few indistinct words at 5, but was unintelligible until about 8. Global delays, went to special school at 4.
Made amazing progress... learned to read and write at 10 (reads well, writing like a 5 year olds as an adult) and with the help of MENCAP to get him supported work experience... has now been employed for 10 years at ASDA! Works full time! He'll always need support and won't likely leave home (as frankly I don't trust supported living and he loves our dog too much to want to try it)
But the little boy at 3, 5 ,8 and the gentle autistic man he is are world apart. And he's the centre of our family :)
He was also a gestalt language learner, and when he learned to talk it was very stilted phrases, and gradually they became more useful...but he still talks like that to a large degree...which actually works well in customer service😁
He's also VERY repetitive, which can be wearing at times, but we've learned to live with it!

Original poster
okroger · 31/07/2026 20:56

Thanks @Cantwaitforwinterthat’s great he does so well. Can I ask what he was like at 3.5? Did he understand instructions? X

OP posts:
Cantwaitforwinter · 31/07/2026 20:51

My DS was officially diagnosed at 3 years old, he attends mainstream school, does well and is happy. He’s still non verbal despite speech therapy but has gotten better with non verbal communication and making slight sounds.

He's almost 8 now and is a happy, loving, very intelligent and funny little boy, he occasionally has bad days but what child doesn’t? My Neurotypical 5 year old is harder work than my son.