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Use this forum to discuss neurodiverse parenting.

Struggling to accept DS 3.5 likely autistic

2 replies

okroger · 31/07/2026 19:47

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:
okroger · 31/07/2026 20:24

Sorry re posted by accident

OP posts:
Jimmyneutronsforehead · 10/08/2026 03:07

DS was diagnosed at 3.5, but the writing was on the wall from birth tbh. I know people will say you can't possibly tell but he was just such a different child.

He slept all night, sounded like a dream but literally never napped for appropriate stretches in the day. Not even contact naps.

He was referred for an allergy test and his consultant asked if we had any other concerns, whilst giving me the eyes as DS took his shoes and socks off, tiptoe walked, flapped and lined some cars up. I said yes, autism, explained he was just on the pathway but she somehow got us fast tracked with a consultant to consultant referral.

He had about 10 words by 2 and none by 2 and a half. Hand leading, no pointing, no mimicking animal noises.

By 3.5 he had some undecipherable gestalts. We did 2 rounds of NHS SALT. It didn't help as they didn't understand GLP.

By 4.5 he still wasn't speaking but had a few more gestalts.

I wish I'd gone for an EHCP assessment early, and gotten him straight into a specialist school but he started school not long after 4.5 at a mainstream and his language boomed.

We always knew he could understand us, but he just never spoke.

Now, he can say a lot. Sometimes he never shuts up. He can say long, complex sentences and ask questions but we still don't get back and forth communication, intrigue and often we don't get a response when we talk to him. He's 7.

His biggest issues currently aside from his speech are safety from eloping. We have a SEN pushchair from children's occupational therapy, but it is very basic and doesn't do everything we need it to do. Doesn't recline, doesn't have a deep hood, is a pain in the arse getting up and down. Another big issue is toileting. He is still in nappies and unreliably and inconsistently uses a toilet for weeing, never uses one for pooing, but is proficient in getting his nappies and wipes for me. We've had OT, HV, ERIC, continence team and GP involvement but we think the issues are sensory around both the bathroom and his interoception. His school were fantastically understanding about an intimate care plan and they referred me for a lot of the support we've had even to no avail.

One thing I refused to do was deny him opportunities to do things the other children wanted to do. There were times I had to helicopter, but I am confident that now I can relax a bit as he is maturing and I know his limits a lot better. There were a lot of times I thought it would just be easier, we would avoid meltdowns if we just didn't go, but he surprised me a lot of times with his resilience and his determination to join in.

We still have issues with turn taking, delaying gratification, waiting, queuing. A lot of places will support you even without the disability access cards, and in places where we are forced to queue if he has a meltdown then we always make a plan for where we can go to calm down and I never let it stress me out because he deserves opportunities to try things, even if it doesn't always go to plan.

I would say that between the ages of 3 to 5 I thought my life was going to be a permanent living nightmare. It isn't, and I love our peaceful life. His cousins love him, his schoolmates have been nothing but kind and nurturing. My one regret having been through the EHCP process 5 or 6 times now with early annual and emergency reviews is not starting it before school even started as we've only just got into a specialist and as good as his mainstream was, they have limitations. He's bright as a star, but has done no academic work in 3 years due to the schools limitations, not his.

Kids with speech delays will always have a speech delay, even when they appear to be caught up. It impacts the way they process and understand language and has lifelong implications that I didn't consider once he started becoming a little chatterbox.

Don't mistake your little boys lack of speech for a lack of understanding, you seem to know about GLP which gives you a better foundation than starting with NHS SALT, and I can say your life will be different but it just becomes your new normal and knowledge about autism and speech and language is a powerful tool for at home interventions.

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