So stressed about DS3 likely autistic

[Mysweaterisonbackwardsandinsideout]

My lovely DS is 3 and it’s looking very likely he’ll be diagnosed with autism. He’s speech delayed and delayed with his communication and interactions. He can talk but he’s miles behind kids his age and never answers a question or has a conversation.

I feel so bad for him. All I keep thinking about is way into the future. Can he get a job, enjoy travelling, can he live alone, get married? etc. I know I’m being ridiculous looking that far ahead but my mind just keeps going there and its consuming all my time.

I keep feeling bad on my older girls. They’re 8 and 10. They’re now aware of him being different and I can tell they they’re concerned.

Often I feel like this payback for me not just being happy with 2DC. He took almost two years to conceive with multiple miscarriages before and I keep thinking maybe it was a sign.

I just wish I could see into the future.

Sorry I know this sounds so dramatic but I’m wondering if anyone else has felt like this?

@Whatisfrenchtoast thank you x I feel a bit angry with anyone that agrees with me but then I feel the same when people say he’s fine. They can’t win which is clearly my issue!!

@lovemetomybones thank you so much x

Does anyone have any advice for potty/toilet training. He’s not showing any signs yet of being ready yet so probably pointless thinking about yet. My concern is for school and if he was able to go to mainstream surely they wouldn’t be changing nappies or dealing with lots of accidents?

Oh sweetheart. I remember feeling like you did. A million years ago DS went to school with so little speech. And was so obviously different to his sister.

hes late 30s now. Went to uni (got a first as well). He’s married (happily, as far as I know) and just had his second child 6 weeks ago.

Again the toileting is something we are currently experiencing. Up until recently he couldn’t recognise the signals. We have tried so many times but he would be wet and not even realise it. However, it all changed recently as in the last month. Suddenly he gets the urge, he asks for a wee and we have had a few accidents but we are well on our way. He is deferred a year so still at nursery.

my advice would be that if he doesn’t recognise the feeling of needing to go, if he doesn’t know when he’s wet, also you mentioned he was non verbal, my son was until recently and I found that abstract images wouldn’t work he just didn’t understand or recognise. We tried at 2, 2 1/2, 3, 3 1/2, 4 and now at 4 1:2 he gets it. You can’t force it, just be as relaxed as you can. Because we tried so much he now hates the potty but will go on the toilet.

finally I was worried about nappies at school, but I have been assured by staff that they have the facilities to change him and do do this. Schools are prepared for children with delay. But as I said it’s been 2 years of stress then one day he just does it!

I am in a similar boat, OP – DS1 is three and is likely to get an autism diagnosis. He sounds similar to your son in terms of speech and I have also found it really difficult having his preschool and SALT confirm that he is likely autistic.

I have been feeling much better about it recently, though. One thought I return to is that our world needs neurodivergence. So many thinkers and inventors who changed the world – Albert Einstein, Marie Curie, Isaac Newton, Leonardo Da Vinci, etc – were suspected to be autistic. Some of my most brilliant friends and colleagues have an ASD diagnosis. One of them didn’t say her first word until she was six. I know that it’s a huge spectrum and I don’t expect DS to achieve academic or career success if that’s not who he’s meant to be, but it helps me to recognise that thinking differently can be a strength and that ND brains aren’t ‘broken’ or less than. I know that DS will have his challenges and that scares me, but I also see the pure joy he gets from cars, the seaside, his spinning chair, from taking something apart and figuring out how it works, and it motivates me to help him find what he loves and carve out his own place in the world. My mantra when I get worried and overwhelmed is ‘think outside the box’ – he is different from his NT peers but he can absolutely be happy and love life.

Big hugs OP, you sound like a great mom and your son is lucky to have a supportive family.

Re toileting it might be worth trying anyway - children with interoception and expressive communication differences are not always going. to show the same signs as others but that doesn't mean they can't pick it up, and most of us were probably trained way before we showed the signs people look for today. Just be prepared to give it a good few days, like people would have done with younger ones, then stop if it isn't working.

If he does have to start in nappies that should not be a problem and it's illegal to exclude a child because of toileting needs. They also should not be expecting parents to come in and change the child, though some schools do try to insist on this. ERIC has some resources on this should you need to fight that corner.

Thank you all. I will try potty training over the summer and see what happens. He just doesn’t have a great understanding of instructions so I feel doubtful.

@Atatwalker Wow that’s such a lovely story to hear. You must have been amazed ah the progress he made. What was he like as a toddler/pre school?

@mayflowers9 Thank you 💙 That’s so true. I need to read messages like this when I’m feeling down. I felt positive after posting yesterday and then today I felt a bit flat about it all. It’s been a heavy week with various appointments so I think that’s why.

I know so little about all of this, it feels like a whole new world. I don’t know anyone openly autistic so I guess I don’t understand how the spectrum is so big.

@lovemetomybones I didn’t know that about school. That’s good to know. Great that your DC is making progress. Did he have any understanding when you started?

At first when we started he had no language but he also didn’t have the cognitive ability to understand pictures or photographs- so trying to show him was so challenging. He also had the added complication that he didn’t recognise when he needed to go or even if he was wet. He would walk around in wet nappies or even wet pants without saying anything.

the break through came when he recognised he was wet, (that was six months ago- it’s not a short process) but he still didn’t understand what a toilet was for and didn’t have the language or sensation still.

it took time sitting him on the toilet, until he eventually weed but he still didn’t have the sensation. It got to the point where I thought this was never going to do this. I went to the GP who said the neurologist had already said it was due to his developmental delay and that has been caused by autism so I was advised to go to the health visitor. This was terrible advice, as they had no idea about how to deal with my son’s other needs and recommended ERIC. ERIC too pushed routine and images both of which had no way of working because he didn’t have the sensation or cognitive ability to understand them. Being non verbal doesn’t always mean they understand but are quiet, he couldn’t connect the abstract to the image.

i was literally pulling my hair out when one day he literally asked to go to the toilet! And today was the first day he has ever gone to nursery and come home in the same clothes!

with autism im finding he needs to watch, see and have the activity repeated 5000 times then eventually he gets it! It was exactly the same with language he said nothing (he had his own alien language) not even mama. Then all of a sudden he reels off the full alphabet! It sinks in just very slowly then when he gets it he masters it quickly! I’ve been so amazed at how he develops I’ve never known anything like it.

i was assured by the primary school that when he goes in September they can accommodate nappies if needed. I was so nervous about this and tbh felt like a failure- but it might not be needed now which is fantastic. Remember it takes a long time to master it won’t take days or weeks, but when they do master it they master it! I hope this helps x

@lovemetomybones thank you. Really great advice. Maybe he does understand more than I realise, I really hope so. It’s school I'm more worried about. Even though it’s 1.5 years away I just can’t see him progressing that much given where he’s now. I’m so awful at comparing him to other kids his age, I just can’t help it.

@Amberlynnswashcloththis is really reassuring. Did he understand most of what you said despite the speech delay? My DS really doesn’t understand much unless it’s a learnt instruction. That’s what concerns me more than the speech delay.

For those who mentioned it could just be a speech and language delay I really do hope so however I’m pretty sure it’s more than that. At 3 he’s only just started responding to his name a few months ago.

Feel the same. I worry about the future. Mine is four and can say a few words but not really any sentences and only certain words. Although he understands a lot (I suspect very bright!) he is nearly non verbal. It isn't a super power as some like to say so it is natural to be worried.

Well they can't not accommodate the nappies because that would be discrimination. I am hoping mine will be out of nappies by the time he starts school in September but I am not sure at the moment.

Yes, in our case I think the understanding was there just not the words. For example, at the Speech and Language assessment he was shown a box and asked if he wanted to take an item out to which he reacted by stepping away to the other side of the room and standing with his back against the wall. According to the assessor, this was him demonstrating understanding about what was said and communicating 'no' without actually using the word. That observation was reassuring.

That’s food @Amberlynnswashcloth
I’m not sure what my DS would do in that situation, probably must whatever he wanted! 😔

I have an autistic son. He talked early but has high support needs in a lot of ways.

I found watching Love on the Spectrum very reassuring. When you look at people like Dani who didn’t talk until she was 6(?) but now has a relatively independent life; or Connor and James who are so like my son and have become utterly delightful adults, it really puts things into perspective.

I also have been diagnosed with ADHD with ‘autistic traits’ and DH is almost definitely autistic but has no interest in being diagnosed… we’re (on the whole) very normal, boring functioning members of society with jobs, and mortgages, and hobbies.

My ds was non verbal until he was 7. Very developmentally delayed , special school the works. He’s 18 now works full time at a job he loves and is learning to drive. He has amazed us at every turn. We’d be thinking oh ds won’t cope with this, or that and he has. He’s a very polite kind young man, he’ll never be a brain surgeon but as long as is happy and fulfilled we’re happy.

Hi, my son was diagnosed autistic back in October 2025 just as he turned 5. We and all the professionals knew he was autistic around the time he turned 3. He is in Reception in a mainstream school, with an ehcp. It hasn't been easy and we have already had to do one emergency review for more funding for him but equally it hasn't been an unmitigated disaster. The school has been very good and he enjoys it there. We know there will be specialist education some point in the future but the question is more when. He is slowly learning to read. He started in nappies but came out of them this half term just gone, which we are delighted about. He still doesn't have age appropriate toileting at home. He is challenging in lots of ways but he is also a lovely cheerful lad with very funny quirky interests and we are very proud of him.

My son’s 10 and was diagnosed with autism at 3. It is harder than my older kids as her struggles with emotional regulation and needs set routines. He did a lot of repeating rather than talking until he was about 6/7 then his speech gradually improved. We started toilet training at 3 but he was more like 7 before he was fully trained. He wore pull ups at school which they were fine with.
Hes very bright with a fantastic memory and is above age related in most areas. But needs a full time 1:1 to support him. He struggles socially and is very young/innocent.
we have no idea what the future holds it’s anywhere between he will live with us in adulthood and always need support to he excels in education gets a amazing career and is able to be dependent, have a family etc. or anything in between.

its ok to grieve what might have been but then you need to be ok with who your dc is and be able to advocate/ support them

@Mysweaterisonbackwardsandinsideout there may be some virtual courses on here that would interest you. Most of the courses do not need your child to have an autism diagnosis in order to sign up.

https://www.caudwellchildren.com/families/family-support-sessions/

@SherbetDipDap I need to watch that, I’ve never seen it. Reassuring to hear x