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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To lose hope- Non verbal ASD

32 replies

Thehonestbadger · 08/06/2024 22:44

My DS recently turned 4. He has non verbal ASD and raging PICA.
He did start speaking (single words) but then regressed around 16 months and stopped. We get odd words now and always in context but it’s rare, maybe 3 or 4 per week.

He’s not potty trained
can’t follow even basic instructions
shows little understanding of what’s being said to him.
has very inappropriate behaviour socially (licking and climbing strangers…etc)
attention span is fleeting
very hard to engage
climbs furniture relentlessly
throws food all over the place

I keep being told by everyone that he may well make massive development leaps and I just need to wait it out as though it’s a given that he’ll progress loads. I feel like the worst mum but honestly I’ve just lost hope. Hes made very little progress in the last 2 years and I just can’t imagine him suddenly jumping forward and talking/functioning even semi independently. The concept of him being able to do even basic stuff feels ludicrous.

Please share your personal experiences with ASD kids.
We love him but his extremely high needs and difficulties are completely ruining ours and his siblings lives

OP posts:
Bigfuckoffmarrow · 19/09/2024 10:20

@EilonwyWithRedGoldHair that sounds really hard. Despite my son's issues it could be worse. He is generally happy which I am thankful for.

When did you notice an improvement and what do you think changed things?

existentialpain · 19/09/2024 10:22

My son is the same. He is now an adult and very happy in an assisted placement. But the years I spent caring for him were relentlessly tough. I have no advice except to say I understand exactly how you feel.

EilonwyWithRedGoldHair · 19/09/2024 13:39

Bigfuckoffmarrow · 19/09/2024 10:20

@EilonwyWithRedGoldHair that sounds really hard. Despite my son's issues it could be worse. He is generally happy which I am thankful for.

When did you notice an improvement and what do you think changed things?

Stopping trying to send him to the school he was at helped, and getting a more appropriate school place in a small unit. A fantastic local group run by Barnardo's that helped him no end with emotional regulation. Melatonin to help him sleep. Going very low demand at home. Picking battles - for example at the end of the day does it matter if he'll only wear wellies?

Emeraldcity1989 · 19/09/2024 14:05

This reply has been deleted

This has been deleted by MNHQ for breaking our Talk Guidelines.

LottiePa · 19/09/2024 15:12

Firstly, sending you lots of love 💕

My DS is 6 weeks away from his 5th birthday. He hit all of his milestones and regressed at 18 months old and didn’t speak again until just after his 3rd Birthday.

He attended a special needs nursery for a term and they gave him PEC’s and Makaton which helped and then they discharged him from their care! (I fought so hard to get him there and after 2 months they said it was no longer appropriate - everyone says early intervention is key but getting anyone to intervene is almost impossible and soul destroying in the process)

He’s on the Pathway for an Autism diagnosis and was on the waiting list to NHS SALT. (He’s only just had his 4 hours after waiting since he was 2 years old!!)

if you can afford it, I throughly recommend finding a private SALT. It’s the best thing we ever did for our Son. You can find one on the ASLTIP website. Until a year ago DS could only say Mum, Dad, Yes, No and Bye - A year of regular (not weekly, he did his in blocks of 4 weekly sessions, then a short break and then another block) speech therapy has been life changing.

He is now speaking in sentences (pronunciation can be poor and hard to understand but our SALT isn’t worried about that and says it will improve) and we can actually have conversations with him! This is something I never thought we’d have and means the World to me - I resigned myself to the fact that he would never talk and found it all very difficult to cope - the worry and anxiety nearly crippled me - it still does at times.

I know that speech therapy isn’t like this for everyone but I didn’t think it was possible for my Son and honestly it’s worked wonders.

We were also late to potty training (I think this was my fault, as I was waiting for his speech to improve before starting) and it just felt like we had been potty training him for years. He only “got” the poo side of potty training at the start of this year (he was a few months past his 4th birthday) but is now dry at night too.

He has an EHCP but has just started mainstream primary school and is doing well so far.

I know he is autistic. A year ago this terrified me, kept me up at night and made me compare him to everyone. I was utterly terrified about him starting school and whilst I know he has his challenges, he has made enormous progress over the past year - he’s just leaned to swim, with swimming lessons in a class full of 4 other kids and is doing well, earning three badges recently and moving up two groups - again something I never thought we’d be able to do - especially not in a group session with other noisy kids)

Meal times have always been a problem as he just wouldn’t eat a hot meal at home (but always did at nursery and now School) but that is slowly improving too. I learned to offer him what we were eating and then just let it go if he says no and serve him a safe food and make sure he takes a multivitamin. Thankfully he eats a lot of fruit and dairy and eats chicken so his overall diet isn’t too restricted.

I genuinely never thought we would get where we are now but he’s made so much progress and I genuinely couldn’t be prouder of him. There is always hope 💕

Ruelzdontapply · 19/09/2024 15:37

Please don't give up hope ds 7 is now partially toilet trained at home he does not wear nappies at all. He will take himself to the toilet. I still need to watch him closely when he goes because he will eat number 2s.
At school and outside he wear nappies.
He is still non verbal but his understanding has progressed.
We learnt to communicate in other ways with the help of speech therapy. We use picture cards has out main form of communication.
Ds has started babbling like a baby which is an improvement to because he didn't do this before.

mitogoshigg · 19/09/2024 15:43

I can't promise you anything but I can tell you that my dd barely spoke at 4, she knew words but screaming was her preferred communication method. She wasn't potty trained, I was bruised quite frankly and bitten.

We made a huge breakthrough on speech in that following 6 months as she discovered reading, turned out she could read from me reading to her, though she wouldn't spontaneously speak except in odd single words, she would read books aloud fluently (go figure!) and she potty trained of sorts at 4.5 though accidents still persist to adulthood alas. She's academically very able and speech improved to fully verbal (though selective mutism is an issue) and finished university recently, has left home too

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