So stressed about DS3 likely autistic

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

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.

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.

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!

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.

I remember the feeling when I'd spent so long keeping the worries in my head, when someone else validated it out loud it took me a few weeks to actually process it and how it felt. Although I'd gone through so much in my mind, having other people say it made it feel different. Give yourself some grace OP and just allow yourself some time to process what your feeling.

My son is 4 1/2. I have been worried about his development since he was 6 months old. He has now been diagnosed with autism, global delay in all 7 areas, I suspect AFRID, PDA and interoception issues. Like you I had him late at 39, age gap with older daughter and had many miscarriages before him. It’s an absolute rollercoaster isn’t it?

the fights for survival are never ending, the not knowing what’s wrong, the fear of predicting what’s wrong, the endless wait for diagnosis then when you do get a diagnosis the absolute battle to get support. I think I e battled with every single counsellor, SEND employee in my council, even write to Bridget Phillips on! It’s hell, and then the government white paper which removes legal rights, funding inadequate, criteria for severe disability based on physical disability. The fight for his EHCP only for it to be taken away in 7 years. I work in education and even professionally I know this legislation is woefully flawed and underfunded.

on top of this friends and family don’t get the struggle because he doesn’t look autistic, and why can’t he sit still in a restaurant for two hours… clearly bad parenting.

the fear of the future, will he beable to live an independent life, what will happen when I die? This is the background noise all vying for head space in my brain.

you can’t let it take over. Celebrate the little wins, embrace his quirks and amazing personality. Try to live in the moment- today for example I wanted to sew but my son wanted a cuddle so I sat on the floor and cuddled him we then sat together and he pressed the buttons on my sewing machine.

I fight and fight and fight for my son but I know I can’t predict the future so I need to live in the present. I just realised recently that my sister n does everything everyone else does on the planet just 2 1/2 years later. You know what that means… he can do anything just in his own time. He is a gestalt learner and spoke his first words at 4, I now can’t get him to stop talking! He couldn’t walk until he was 2 1/2 but now he climbs on everything. He never acknowledged any child, but this week he hugged a girl who was crying and told her not to worry.

its all there, just in his own space and time. So the government can fuck off, those who don’t get it can fuck off, strangers staring disapprovingly can fuck offhand my jumbled head of worry can fuck off!! He’s going to have a wonderful life full of the passions and interests he’s into at his own pace and time.

if no one told you today you are doing an awesome job, your son will find his way because he has a wonderful mother who cares x

My oldest wasn't talking at 3. We had loads of speech therapy, both nhs and private and was very slow going. In reception they queried if she was autistic due to her challenges in relationships with other children, emotionally chaotic etc. Fast forward to year 5 - she is now top of her class, fantastic friend group, captain for 2 school sports teams (a first for a year 5 student, it's usually year 6's). She is on wait list for an autism assessment, but she is doing really well.
Just wanted to bring a positive story to hopefully help you be less worried for his long term future x

Yes I second this @Mysweaterisonbackwardsandinsideout . It wasn't the case for my son but for my niece. She speaks perfectly now but with an accent. Nobody knows why.

I'm just coming back to add a little more.
I have the perspective of being a parent of one child who is, for want of a better description 'able autistic'...also female, so most of the signs were missed early one although with hindsight is was pretty clear she was not neurotypical, and the early years were spent battling with ARFID and ADHD so the ASD was ignored. Her life has been difficult because she is autistic (very) but able and so much is expected of her that is hard.

My youngest was clearly delayed in all areas...from walking to speech to comprehension... and he got help early.. was in special ed from nursery on.

I feared for his future...god how much I cried about him! But the reality is that his life is ok... he had a gentle, lovely schooling, support all the way which has enabled him to flourish. then special needs college and supported into employment (he works on a kiosk checkout which is his safe space) Asda have been FANTASTIC with him... gave him a chance to try, and realised that his autism is a bonus... he works hard, remembers everyone and has the same little conversations every day... perfect routine which makes him, and them, happy!
Do I wish he could live independently, marry, drive, take a holiday without us? Yes of course... but equally he hasn't had to experience heartache, jealousy, financial worries..a mortgage. His life is simple, predictable and loved.

Side note... my son learned to talk almost exclusively through taking phrases he heard and trying to use them (he still does in fact) He was echolalic but that's how he built language, and also how he eventually learned to read :)

My DS was very similar to how you describe your DS at that age @Mysweaterisonbackwardsandinsideout he also had echolalia with phrases from his favourite TV shows and as he progressed in his communication he would use the phrases in context so when something went wrong he would say 'Grimbles' like Grandmaster Glitch in Go Jetters. Or when he was surprised or excited he would say 'Shiver me whiskers!" like Kwazii Cat in Octonauts.

We did the Hanen More Than Words training and then the SALT taught us how to use PECS (picture exchange communication) with him and nursery used it too.

@RaraRachael it might be worth looking up speech & language milestones as these are fairly well defined and would be worth a referral via HV to a SaLT assessment if he is not meeting them.

I've had a quick Google and it all seems a bit more complicated these days but eg having no words intelligible by an outsider and no linked words (v simple 2 word sentence eg hi daddy) at 24m would probably raise a referral for S&L assessment.

I know you need to be very careful as a grandparent but speech & language is perhaps a less intimidating thing to tackle, and it's well established that early intervention helps if needed. I have always started from a position that an assessment is just that, it's not intervention or therapy it's just asking an opinion from someone more expert. If they say he's fine, fine, at least you've done due diligence. But I can also imagine I might not have taken it well if my mum had pushed this on me.

There is a vast range of typical development (or nearly typical) in these very young children. I think my view of "normal" was based on my very verbal eldest, but really she was just one end of a very wide spectrum of typical.

@Miskast Thanjs. He's got a little brother who's one and responds to his names, interacts with us etc which are things he never did so I'm hoping they'll notice the difference.
I find it odd that the nursery haven't said anything. The nursery that fed into my school was almost obsessed that children were autistic. When we got them in school, about 70% weren't.

Hi op, it doesn't sound dramatic at all, it's very understandable (and common) to feel the way you do.

It takes some time processing it all really, and many experience a period of 'grief' for what could have been. But as others have said, you can't really know how his autism will affect him as he gets older. A diagnosis is a very positive thing, and with SALT and other support in place, he may progress. It's a cliche but all you can really do is take each day as it comes. You will asjust. That fear for his future will always be there to a degree, but you get better at trying to make the most of the here and now as you adjust to the knowledge - and you'll become an incredibly strong advocate for him, which is the most protective factor in positive outcomes.

My 9yo dd was finally diagnosed last week. She has a very different presentation - no obvious early signs but struggled more at school age and currently not attending school due to burnout from masking. I've sometimes cried myself to sleep looking at stats around mental health issues for autistic girls. At times we've been on our knees. Then she sends me a screenshot of a discussion thread from one of her therapy sessions and I realise the importance of parental support and advocacy:

"Hello, my name is xxxx. My life is very hard sometimes but I can always push through it with my mum and dad's support." ❤️

It's fairly common for nurseries and schools to either not notice or not mention it. There is a lot of grace needed for small children and often even "red flags" for autism are developmentally normal at a younger age.

I asked 2 different nurseries and 3 different class teachers if my son could be autistic and they all said no. He ended up in special school so he is not a borderline case. I think we assume or hope they will spot these things but they really aren't experts and it often comes down to parents, who are often in some combination of denial or processing. But time helps. Sometimes the wheels falling off is a necessary step before anyone takes the parent seriously anyway.

Both my friends’ children were speech delayed and were quite behind developmentally. Both were later diagnosed with ASD. My two had great vocabularies at an early age and were meeting all their milestones. My eldest has been diagnosed with ASD and ADHD. My youngest has suspected ASD. They are all teenagers now. My friend’s children are doing exceptionally well, maybe struggling socially from time to time, but hard working and doing really well at school. My two are all over the place. Eldest struggled at secondary school, despite being consistently ‘top of the class’ in primary. My youngest has an anxiety related severe illness and is unable to attend school. Nobody can predict the future.