Has anybody’s child with autism been like this and made progress?

[L0ts]

I guess I’m after some words of solidarity. My four year old has always been the kindest and most gentle little boy, he really is lovely and wouldn’t hurt a fly. But recently life is getting more and more challenging and I realise that for him it is probably worse than it is for me because I can tell he’s so frustrated.

So he isn’t non verbal but he does not communicate at all, he knows some very basic phrases and instructions but I would say 75% of the time he has next to no idea what you’re saying to him. I’ve never been called mommy, never been asked a question, I’ve never had a conversation with him at all.

He does well at nursery, as in he doesn’t mind going, last year he loved playing there but I think recently they’ve said he just paces the classroom, he isn’t interested in doing anything at all. He suddenly hates baths, won’t walk anywhere outside, usually a lover of parks and soft plays but won’t go anywhere at all. He is still in nappies, I wouldn’t even know where to begin with potty training, he doesn’t understand anything about it. He had just started telling us when he had pooed but now is suddenly taking the poo out himself and getting in a very obvious mess when he does.

All he likes to do at the minute is sit on his tablet and watch YouTube. Which I don’t stop him from doing because any interest is an interest at this point and he’s heartbroken when you stop him. It’s almost like a safe place for him. He has made some progress since a year a go, no longer breastfeeds for comfort, no longer sleeps in our bed, no longer needs assistance to fall asleep, no longer opens every drawer in the house and empties its contents etc. He does have more of an understanding of things than a year a go I suppose but it is nowhere near what it should be at all, not even close.

Please, has anybody had a child with autism be like this and make progress? I’m desperate for some positivity, I am quite literally sat here in floods of tears.

Watching with interest as my little boy sounds similar, although is a year younger and has no words.

im so sorry you’re going through the pain of watching your loved one suffer - it’s heartbreaking 💐

OP what support is he getting at nursery, what do they do to try and engage him? Does he have an EHCP? Does he get any SALT or OT therapy, or anything else? Do you have a school place agreed for September?

@openupmyeagereyes His nursery are great tbh, they allow him to do his own thing but try and get him to do 1-1 work with a teacher for at least 5 minutes a few times a day. They have now sent off the application for an EHCP a few weeks a go and we are hoping to have it in place within the first few weeks of him starting reception in mid September. I am worried about him starting reception but his school really seem very on it with him. We are very open to applying for a place at a special needs school for year 1 though if he doesn’t get on in mainstream school over this next 1.5 years! His SALT has been useless tbh, he’s had 3 sessions in just under a year, not entirely sure what help they’ve been if truth be told.

I feel like his nursery should be doing more than that really. Did they apply for any top-up funding for him from the SEND team? Where we are, when my ds was at nursery this was called SENIF and it allowed them to hire a 1:1 for him for his last term there. He only did 3 hours a day.

It seems easy for them because of his calm temperament. If his behaviour was different they would have to be doing more.

@openupmyeagereyes Sorry yes they have applied for top up funding too! My partner does nursery pick up and drop offs so I heavily rely on him to tell me any feedback and well he can be a little useless 😂

Would he tolerate a hat, sunglasses or ear defenders to see if his sudden dislike of things is sensory related?

If he likes YouTube does he actually like the videos or does he like the extra stimuli of the lights, colours and sounds? Which you might be able to emulate away from the screen if you wanted.

If he can use a tablet have you tried using communication software on it to see if that helps?

@Singleandproud He would just take them off unfortunately 😩 Tbh we’ve been through phases like this with him before and they seem to end, eventually. Ever since he was about 18 months old he’s had the odd few months here and there where he hates walking outside. He’s fine outside, just absolutely will not be put down or get out of his stroller and he’s almost four, so you can imagine how big he’s getting for his stroller now.

He has no danger awareness so when trying him with walking or holding our hand he darts in to roads etc, he did this once when I was about 32 weeks pregnant. He definitely likes the lights and colours, he loves nursery rhymes too tbh and all of those sort of videos, they’ve taught him a lot. He can count, knows shapes such an nonagon and rhombus, he knows all the colours, knows even the order of the dwarf planets, he’s so exceptionally clever, he just uses no language to communicate. We’ve always said it’s like he has no desire to tbh, just hoping one day he does 😩

My DD is relatively low needs and didn't get diagnosed until she was 13 so completely different to your experience.

She was in her pushchair until she was 4 and she was exceptionally too and looked like a 6/7 year old so I'm used to the dodgy looks you get. It might be worth saving up for an Send pushchair ready for when he out grows his normal one.

I once saw a young boy with a hi-vi's vest on with "I am autistic. Give me space and call ___" if lost. So I suspect he was a bolter and that might be a good safety thing for you to try. DD hated reins but loved her Little Life backpack which comes with a handle and comes in the shape of different animals, you feel a little like you are walking a dog but if it keeps them safe who cares.

Have you attempted sign language? Something Special on cbeebies uses Makaton, or you could try BSL or just make up your own which might reduce frustration for everyone. When DD had her ASD assessment they asked if she pointed and I said not really but we signed from a very young age but the Ed psyc said its two completely different skills and uses different parts of the brain so you may find he takes to signing more than verbal communication.

*exceptionally tall.

My DD sounds a lot like your son too, in terms of intellect she's never really had a specific interest but loves learning and collects knowledge like others collect stones, trains, stamps etc.

Has the funding come through yet? What are they proposing to do with it?

I agree with open, the nursery sound like they need to be doing more to support DS. Make sure the LA stick to the statutory EHCP timescales. They must inform you whether they are going to admit or not.

I also second the suggestion of a SN buggy. DS1 is a teen now but he still uses one, it helps him cope out of the house. We have a wheelchair but he prefers the SN buggy. You can ask for a referral to wheelchair services and there are charities (e.g. Newlife, Boparan Trust, Caudwell Children, Florence Nightingale Aid in Sickness Trust) that can help fund them.

I am interested in this too, especially about receptive language development. L0ts, I have read your post on another part of the forum and you have gave some hope to parents who aren't as far down the line as you so keep the faith

@L0ts I potty trained my dd in a very specific way and I really didn’t think she would get it but she did. Feel free to pm me and I can send you some tips.
Sorry I don’t have much advice about the future as my dd is similar age but it’s good that your nursery are being proactive. Maybe less time doing his own thing at nursery would be beneficial if they would be able to increase his 1-2-1 time, if it’s not distressing for him.

Hello OP, you and your son sound lovely, and I'm so sorry you are feeling low and overwhelmed ... it is such a completely normal response to your situation ... and the challenges are so real, and as parents we have to fight and advocate so hard for our children. It's a lot.

I was struck by the last bit of your post where you were re-capping his development across the past year. That is a lot of development you listed out, and in my experience the sleeping issues alone are a huge win 😀

I would echo the pp who suggested trying Makaton, it can be brilliant. We found the best way to use it was for me and DH to use the signs whilst we were talking, with no pressure or expectation for our child to use it too. Sometimes just repeating is needed for quite a while.

Our favourite signs, if you want a starter 'pack'! were:

Hello
Thank you
Yes
No
Happy
Sad
Hungry
Thirsty
Hurts
Noisy
Park
Banana
Toast
Biscuit

I don't have any advice but I honestly could have written this post, my DS is very similar. Verbal but completely non-communicative with limited understanding and also starting school in Sept. He really only says numbers and shapes, no 'mummy' etc and couldn't answer a question. We've also had a few SALT sessions but they're mostly useless as he's very obviously not interested in communicating.
He has much more screen time than I would like but as you say, it's an interest. We've got loads of maths apps as he's mad on numbers and also is really only interested in mark making on a tablet rather than paper so colouring games are great for him.
We seem to go through peaks and troughs of frustration and development, it really can be very difficult especially when you have other children. My DS has been particularly grumpy during the holidays as he's not in the routine of nursery, could your DS be similar at the moment?

My soon to be 7 year old was very much like this at 4. He's made some progress since, is much more verbal although non-conversational, goes to a mainstream and needs a 1-1 to do any work. He's not fully potty trained. Fine for a number 1 but unfortunately not able to sit on the toilet for a number 2 even though he's aware of what's happening. We are looking to put him into a more specialist school since we get no support in terms of SALT, OT etc. in the current school. There's a huge demand on limited ASD resources in the borough so we are not expecting much help unless we go private.

@klayton if OT and SALT are specified and quantified in F of the EHCP, as they should be, then they must be provided. I’m not saying don’t pursue a special school placement, but just wanted to make you aware in the meantime if the provision is in F it must be provided and you can enforce it.

Sadly my borough is really poor in providing services even though specified in the EHCP. They are really stretched and they don't have enough staff to deal with all the requirements. We've complained multiple times to the school and our council worker but keep getting told of waiting lists and lack of specialists available as they are unable to fill vacancies.

Lack of resources and waiting lists are not lawful excuses. If the provision is specified and quantified in F you can force the LA to provide it. Ultimately it is the LA not the school with the duty to ensure provision is provided. Email the Director of Children’s Services reminding them of their duty under s.42 CAFA 2014 and threatening judicial review. If that doesn’t work contact SOSSEN for help with a pre-action letter.

Unfortunately if the wording is vague and woolly with wording such as “access to” “would benefit from” “regular”… it isn’t enforceable and you should request an early review to tighten it up.

@FloatingBean that’s really useful as I’m currently going through an appeal on the EHCP section F. Are you able to give an example of wording that would be enforceable? Thanks

Thanks @FloatingBean that's very helpful!

@Peanutbutter7 for example, “X will receive 1 hour per week of direct 1:1 sensory integration OT delivered by a HCPC registered OT with training and experience to at least level 4 of the Sensory Integration Network Postgraduate Modules.” It can then go on to provide further detail.

thanks so much @FloatingBean

Agree he needs more interaction at nursery. My DS was the same (allowed to do his own thing at nursery as he wasn't disruptive) but it was pretty much dead time in terms of learning because he wouldn't talk, wouldn't try new activities, wasn't tuned in to adult instructions, and just did his puzzles and roll his cars quietly by himself. He needed help to get involved with group activities and learning and I eventually found a nursery that would allow me to bring in a tutor for a few hours of 1:1 time each week, and support to get involved in the group activities and it has made a difference. I have to pay for the tutor, but I figure it's worthwhile as he's now taking part in more learning in a setting outside of home, with someone other than me, who knows how to engage him.