3 year old, suspected asd, meltdowns.

[Livinglavidaloca101]

Hi all,

I’m reaching the point of absolute heartbreak over my little boys meltdowns. I just don’t know what to do anymore.

I have suspected he has some form of neurodiversity since he was around 18m - he’s three now. Lots of red flags which nursery also identified. He has a speech delay and suffers with glue ear due to being born with a cleft palate. Each time I speak to a health professional I get the “wait and see” response due to his speech issues. They hope that his behaviour is related to lack of communication. I genuinely don’t know if my suspicions are correct or whether the behaviours are normal - first child etc.

I honestly don’t know how to manage his behaviour when a meltdown is triggered, it can happen over absolutely anything but the common theme is being denied something, food, a toy, turning the tv off. He becomes inconsolable, screaming, sobbing, he goes stiff and will hit out if you lift him. I’ve tried everything, quiet room, cuddles, gentle parenting, reassurance, distractions, it just doesn’t work. And it is very quickly becoming a huge issue every time we go out somewhere, in fact, we no longer do anything as a family because it is just too upsetting and exhausting for us all. Does anyone have any experience with this? I love my boy to death but I’m really starting to dislike spending any time with him. I get anxious going places with him. It’s dreadful and I’m so sad about it as I have no idea how to address it. Please help.

Huge sympathy here as I had a DC who was very similar but without the Glue Ear.

Can I ask what they are doing about his Glue Ear? Is he getting SLT too?

What is his communication like op? Does he understand simple instructions, can he make requests?

Have you tried visuals to help support his understanding around transitions and being denied things? We had exactly the same issue with ds who has a severe communication delay. I'm happy to give some suggestions if you'd find that helpful. What I would advise would depend on his level of communication.

Thank you so much for replying @normanprice62 @TinyMouseTheatre . Just having recognition sometimes is help in itself.

@TinyMouseTheatre he has a hearing aid, cleft team/ENT are very hesitant to discuss grommets. They’re keen to continue things as they are and hope he’ll grow out of it? They believe that grommets would do more damage to his ears than good. We have a formal speech assessment soon and I will be requesting SLT sessions. Though his speech has improved mildly, it isn’t enough in my opinion and is really really affecting his behaviour now. I’m even considering exploring private SLT.

@normanprice62 so he understands commands, and can request food, drinks, ask for “more” - very basic one word instructions. He can identify animals, and he will repeat words but a lot of the time he will speak utter gibberish which is difficult to understand, he’s talking to you as if everything he said is clear as crystal when it makes absolutely no sense. Which obviously adds to his frustrations!

We haven’t tried visuals, I wouldn’t have a clue where to start so I would welcome anything you could recommend. I’m really grateful for any advice. X

How do nursery manage his meltdowns? Does he have frequent melt downs there? Do they think he may be autistic?

If he's having autistic meltdowns OP then there will be absolutely nothing you can do to bring him out of them, it's just a case of waiting it out.

What health professionals are saying wait and see? They sound shite to me. How long do they want you to wait? I would want to know at what age they are actually going to do something. I think he would benefit from seeing an SLT, an OT and being assessed for ASD. If you can film one of his melt downs as evidence then I would do that.

If you can afford any help privately then I would do it. You could be waiting forever for very little from the NHS unfortunately.

@Tess150 Nursery identified some red flags such as speech delay, tip toe walking, carrying objects everywhere and meltdowns. Though they recognise he’s improved massively, they’re still keeping him in mind for a referral. They too are keen to see how he progresses with proper SLT input. He does have them there and they pretty much say distractions and letting him ride them out as you’ve already stated. Not a lot else you can do I guess.

Health professionals are the cleft team, and paediatrician. I don’t have much faith in them if I’m honest, they’re just overrun with patients so they don’t really give you any solid answers/advice. Yes I think thats what I need to do next, find out when/what/how and definitely get some footage together. And yes to the private SLT, I’ve been looking this evening so I’ll get the ball rolling. Thanks so much for replying xx

You can't do anything once one starts but there's lots of things you can do to try and avoid meltdowns in the first place. The key is identifying triggers and putting things in place to deal with them. That's easier said than done! I found it helpful to write a trigger diary.

If you can afford private salt I'd absolutely given it a try. He may need some sort of alternative communication method as a bit of extra support. Such as pecs, object to reference or makaton etc but they will be able to advise best. I only mention this as you mention what sounds like communication related frustration. Alternative communication methods can really help support speech development as well as reducing communication related frustration. I'm happy to give you more Information if you'd like on any of these if you'd find that helpful but I really would also see a salt. Ds has used alternative communication all his life. The more communication you have (in any form) the less communication related frustration you'll get.

We've found visuals a great way of avoiding meltdowns. It really depends on what he struggles with. I can give some things we used that have helped.

Visual schedules - great if he struggles with routine. You can make it as complicated or simple as you wish. Ds founds it really helpful to visually see what his day looks like. He can keep referring back to it and remove pictures/symbols (we use a mixture) once he's finished an activity. It's also helpful to manage his expectations. We leave slots for him to choose an activity also.

Now/next board - good for showing him what's coming after the current activity. Ds finds transitions difficult, using this he knows exactly what's going to happen after he's finished his current activity. He now understands he can't always do what he wants all of the time.

Sand timers/verbal warnings - ds needs a warning that an activity is finishing. This used to be the cause of many meltdowns for us. I know of people who use sand timers as a visual reminder that an activity is ending. Personally I sign 'one more finished'. It takes time to implement these things but as soon as I do that now he looks at his now/next board to see what's next and moves on without issue.

Choose board - gives him control to choose a toy or activity, he can still verbally ask if he can but a lot of autistic children particularly when upset find communication very difficult even without a speech delay. We found this a great distraction from something he can't do/have. For example he can't go outside now but he can do x or y. He feels like he's being given some control. It's literally a board with a couple of choices on. It can grow as needs be. Essentially it's a visual distraction but giving him a choice of options you are okay with.

Stopping the use of no - No used to send ds into a rage. I stopped using it completely. We replaced it with 'finished' and then gave options of what he can do/have. You can also try distraction, that didn't particularly work for us. The idea for us was to give some control and encourage a positive communication whilst still getting the desired outcome. A lot of it is thinking outside the box, doing things a little differently but ending up in the same place (roughly at least).

Supporting transitions with pictures - ds used to have next to zero understanding as well as his severe speech delay. He found it very distressing not knowing were we were going. We found showing him a picture before we left and reminders on the way really helped manage his anxiety. This was particularly important for places he'd never been. It was more difficult when he was small but now we can prep him visually for bigger changes before they actually happen.

I hope some of this is helpful. If you need anything explained in more detail or links, give me a shout.

I don't have @normanprice62 's level of experience, but I agree that a proper SALT assessment and getting him some alternative communication support sound like they could make a big difference.

He's clearly got communicative intent and he understands what words can do (or at least some of what they can do, he's only three) – but he can't say a fair bit of what he's trying to and have it understood. Using something like pecs or makaton could really help him bridge what he wants to say and what he can say intelligibly.