To ask you for help about our son with ASD?

[AsdQuestion5322]

He's 6 and for the past two years he has had obsessions about things being a certain way and will give us merry hell if they aren't as he thinks they should be, its getting worse and driving me round the bend 😔

The TV has to be on ITV all of the time, if either of us want to watch something else he'll scream and kick off.

The door to the living room has to be open at all times with the sheep doorstep we have, facing the left.

His tablet. This one he picked up from a classmate and is by far the biggest problem right now. If his tablet is anything less than, say, 60% battery, he screams and screams for it to be on charge. He will not give in to distraction or redirection and insists on being sat with the tablet on charge watching it until it gets to %100 and even then he screams when you take the charger away.

The tablet has to be on at a particular volume otherwise he screams and throws things.

He's absolutely obsessed with confetti since coming home with some from his (special needs) school. He asks for confetti cannons all day every day. If we have any deliveries he expects them to be a confetti cannon and when he sees that they're not, he screams and demands all day long that he wants a confetti cannon. We bought him some for his birthday but he wants them every single day and it's just not practical to have hundreds of pieces of confetti strewn around the floor.

When we did get him some, he'd scream and get aggressive when either of the other children went near the confetti.

We have two other children and if they are told off for anything (reasonably, we don't shout) he screams and screams. If me and DH are trying to have a seruous conversation about anything he screams and screams and tells us to shut up.

It can't continue as we're getting complaints from neighbours.

It just goes on, and on and on and it's driving me mad. I have ADHD myself so have my own sensory stuff going on.

Has anybody experienced anything like this and could you possibly advise some techniques for how to deal with it effectively? I'm at the end of my rope.

Even school are struggling with him and it's a school for solely autistic children.

Edited to add - I forgot a couple of of things.

Nobody is allowed to sing or hum or he kicks off.

I'm not allowed to laugh either. If I laugh he screams at me to stop laughing.

@AsdQuestion5322 many people have got an assessment more quickly using the right to choose programme

https://adhduk.co.uk/right-to-choose/

We went directly to ADHD 360, and our GP was happy to accept a shared care agreement.

I’m only throwing some suggestions out here so feel free to disregard anything that isn’t right for you. There’s no implied judgement here.

It’s often easier for our dc to accept limits that don’t come from a person. If you scream at a person they change their stance, but you’re wasting your breath screaming at a timer. Rather than giving in to him (which is teaching him that you will), a small thing you could do is set a timer and say “in 1 minute” the tv goes back on. 1 minute can be 30 seconds…or 5 seconds. The point is just to transfer the control.

You don’t need to think about doing anything more elaborate with timers or automated controls. Just pick a small number, grit your teeth and see it through.

Re the confetti canon - what was the communication like with him around it arriving? It sounds like he thinks any delivery could be one. We had to give up all notion of surprises with my asd ds (hard for adhd me!). Very clear communication always with supplementary visuals (calendars, count downs, timers) if necessary.

The most useful thing I ever did with ds was to work out his sensory profile (OT will do this or you can google there’s loads of resources online) - take each of the 8 senses and write down what he loves and struggles with in each, strengths, weaknesses.

The key for us was minimising difficult sensory inputs and filling his cup with the good stuff.

Is your ds getting time outdoors and exercise? There might be sensory problems you need to figure out if he doesn’t enjoy being outdoors.

PDA is tough - there’s a Facebook page called “at peace parents” that’s worth a look, and the algorithm will throw up other stuff too. Persistant Drive to Autonomy is a very useful way to conceive it and helped me make sense of it.

So much of the “help” and “support” were offered is predicated on the assumption that parents are NT. It’s so important to consider your own needs, strengths and weaknesses too and be upfront about these. Even just for your own clarity.

Sorry - that’s a bit of a brain dump! Ignore anything that’s not helpful.

I have one of these flavours at home. It's definitely PDA and should be responded to very differently to other conditions. To the pp, no it definitely is not just a battle of wills. Believe me I tried that with mine until we had specialist intervention and its the worst thing you can do.

Mine is 9 now, on a non stimulant adhd meds and is much much calmer but a number of things help, none of these are sticker charts or anything that might work with a nt child.

Firstly read up on pda, understand that for the simplest task or ask the child's brain is responding as though he's being physically attacked. We've been taught to 'talk over' him rather than 'to' him. So i never say 'ds come down for breakfast' , I stand near him and tell Dh or the cat 'there is breakfast on the table, would you like some' then walk away. So there is no request, just a statement of fact to someone else.

Timers everywhere, so we state 'we are all going out in 10 mins' set visual timer, walk away, do not say to the child ' put your shoes on', more 'there are shoes on the mat' and walk away.

To those not living with a pda child it sounds like pandering but once you understand what his brain is doing it makes for a much calmer household.

Also sometimes just buying whatever you need to make it work so for his charger could you buy chargers for many plug sockets so you never need to unplug it and teach him to plug it in himself?

I have many many other examples after years of this. It's very difficult I know, don't beat yourself up OP!!

Be warned respite can be very difficult to access and it can be hit and miss depending on where you live
My son is 14 severely autistic non verbal etc
He has one day a,week in school holidays in a special, needs play scheme which he's been going to since he was about six
He' also goes ti the same place every other Saturday this has been going on for about a year
He was assessed for over night respite about 18 months ago and 2 nights a month were agreed ,and he's just about to have his first overnight this week ,
Our respite has only increased recently due to his high level of need
Ask his school for an early help.meeting to get the ball rolling regarding respite .

I only have one ds who is 16 now. I had to change the way I live to suit him, which is possible to do when you are one adult and one child.

I still don't watch TV when he is around, only things he approves of. I still don't have music on. I still can't eat crisps and crunchy food around him. There are so many things I do to make his life predictable and of course it is much easier at age of 16 because he can do a lot for himself like keeping his watch and phone charged. He spends a lot of time in his bedroom which he did not do until he was 13.

When he was younger social stories did help. Role play to practice how to deal with disappointment, situations that made him angry helped a lot. Doing the role play with his teddy's and toys often helped. Eg a parcel would arrive and batman was expecting something else so he would say something positive and behave in a positive way. Drawing comic strips of situations also helped and ds would keep it and read it when needed. Now we rehearse how he will cope in new situations. Often going to places to check them out before he goes with school, friends etc.

It must be difficult when you have other family member to consider. I struggled just with ds. I hope things become easier for you and your DC.

The thing is, he does need to learn that it is safe for him not to exert full control on the world. That he can make certain choices and controls, for example over what he would like to do in his free time or what foods he likes to eat, but he cannot control things that have a direct impact on others.

For example I would allow him to charge items at 60 percent, if he wants to, whilst reinforcing that this is unnecessary from the point of view of the functioning of the item. That doesn't really impact others. I would not allow him to insist on itv being on all day and no one else allowed to choose. That's not fair on you or your other kids. And sorry but if he has a meltdown about that, then he just does. I would obviously try to reduce the impact by saying that from X date he can have his programme choice from 3-5pm, then it's sibling's choice from 5-7, and mummy and daddy's choice from 7-9. I would have it visually on the wall as a reminder and give plenty of countdown time. But you cannot have a 6 year old holding an entire family to ransom. Imagine what he will be like at 15 if you don't do something about it now. Gently, with warnings, positively, with alternative things for him to do when it's not his turn at the tv. But absolutely he needs to learn that he doesn't get to dictate terms over everyone.

Re screentime, you could maybe get an iPad alarm that can have a voice on it.
Record it saying "this is my shutdown warning. I need a short break. Please turn me off for half an hour in 5 minutes from now". Or something similar.

The confetti canons, I don't understand really. Surely you just say that confetti canons are lovely for special days and he can have one on his birthday. But they are not for everyday at home as the are expensive and make a mess.
Then when he wants one you just keep saying "Yes! Of course, on your birthday, you can have one. Shall we write down how much you would like one?" Then write "Tommy really loves confetti canons and is looking forward to having one on his birthday".
Ask him to talk about it. Imagine he had the biggest confetti canon ever. Get him to describe all the colours fluttering down. Enjoy the idea with him. Assure him he will get one on his birthday and that it's fine to love them. Look at videos. But there's no need to make him think there is any chance ever that he will get one at home if it isn't his birthday. And if that makes him sad - well, parenting is partly about teaching children how to deal with disappointment, sadness, frustration, and anger - not about preventing them from ever having those feelings.

This is awful advice if, like lots of autistic people, time with screens is an important part of how he regulates himself.

Thanks to @Bunnyhair for two outstanding posts on a) historical parallels and b) screen use in the context of neurodiversity.

This is my daughter to a t. We realised that we could start new routines with a new item this is the only way it would be excepted. For example we had the exact issue of the charging for the ipad, we bought a red charging cable and told her when her battery goes red its time to charge the ipad with the red cable. It took a week of reassurance that the ipad would not die until it was on red. The tv, our daughters obsession is YouTube she's allowed turns only on the big TV at a number 8 volume (any louder drives me insane) she's given a 10 minute warning that it's someone else's turn and she has access to another ipad and laptop if she wants to continue with her programmes in the background. We've recently introduced sleep headphones for when we are really at our whits end with youtube these are much more comfortable than standard headphones and don't put pressure on their ears. I tell her mummy's head hurts can you put your headphones on and this works for us. The door thing, is it possible that a sibling has shut them in the room before? The door open reinforced by the doorstop a certain way seems like an anxiety response and makes him feel safe. The confetti cannon, let that just be a school thing. For example my daughters obsessed with roblox and wants robux (actual money) to spend on the game. We tell her it's only available birthdays and Christmas that it's a gift as mummy and daddy have to pay bills. This is accepted and so she is able to wait if she's good we do buy her some but we tell her nanny got it because she's doing so good at school and then it's not asked for repeatedly. My daughter is very much the black and white thinking so we find making rules just that way really helps her and us to cope, the absolute main thing is being consistent whichever parent is home. We use environments to use different rules so nannas house nannas rules, school is school rules, restaurants and holidays included.

These children were labelled things like ‘disturbed’ and institutionalised.

Routine is the only way to manage our son's obsessions. So for us it's Mario. He has 1 hour of you tube videos a day and 1 hour of switch. This is double at weekends. These are at set times in the day ( although more recently he has become flexible with this)

Could you try to create set times in the day for tablet time.

could itv be on a different tv or through another device and if anyone else wants to watch tv is there another room

Sensory stuff I would just try to manage h can't help it.

My aim is to keep son's anxiety level low so he can manage the stuff I can't control

You don't seem very familiar with the concept of special interests.

And in the 90s, when the institutions were very mainly closed but there were no tablets etc?

There were TVs and game consoles in the 90s. Where I lived, at least.

Sounds like a pda profile or perhaps ocd
Linked with autism. My autistic son has found non stimulant adhd medication helpful for aggression.
I like this lady on fb https://www.facebook.com/share/r/KYtJa4BnD9cVdUbB/

But it causes such meltdowns when they’re taken away, so is it worth it? It seems like a ‘fix’ rather than something actively regulating. A bit like how a smoker seems calm when having a cigarette then craves one again when they finish.

Yes I am.
Which is why I have said about reinforcing how fun these things are, drawing, enjoying, writing and watching videos.

If a child had a special interest in ponies (as many autistic girls do) would you suggest buying a pony as the only way to be respectful of that?

Not at all comparable to now. You couldn’t take them out the house, sit on the sofa with them on your lap, most people didn’t have them. Screens are a different world completely now and they pervade everything.

Videos watched on repeat, games consoles etc.

Fabulous advice.

This idea that autistic thinking can never be supported or developed because it's somehow cruel is really pernicious imo, and does autistic people a huge disservice.

All children need treating respectfully and kindly and supported to develop.

You are not failing as a parent if you reach out for help! Please don't think that. It's hard work and challenging to parent an autistic child. My daughter has adhd and we are awaiting an autism assessment. We reached out to the school family support worker for some tips, it helped a little. Search your local council for anything they offer, sometimes there are support groups out there, online or coffee morning type ones. Could he benefit from wearing noise cancelling headphones? If you need to tell the other children off, could you remove them from the room he is in first?
My daughter is also very obsessed with certain things, she won't toilet unless we are stood outside and I rarely get to use the loo alone as she won't be downstairs by herself, I haven't watched anything on TV for years as she watches her certain programmes on repeat usually. We pick our battles as otherwise the meltdowns are bad and everyone ends up shouting. It's really hard and exhausting.

In terms of private ADHD assessment I would do some research into who has a good reputation in your area then find out where they practice, then call the clinic and ask if they do NHS handovers.

I'm in Oxfordshire and found one that works at the Priory Clinic who definitely do handovers, just a point though it's not just the costs of the assessment, you then need regular check ups (6 months) as the ADHD medication takes a while to get right and they need to monitor growth, weight and blood pressure etc.

Thank you, it helps that my whole family are nd and before having my middle child we worked in the disability sector for 10+ years so was given alot of courses and experience before we had her still a whole new world when your the parent though 🤣. I'm adhd, DP asd, eldest mainstream asd/adhd, middle specialist asd and about 10 further diagnosis and baby who at one years old is most definitely following suit of the middle child. I don't restrict my daughters behaviours I try to facilitate them in a way that is more manageable not always possible but my adhd helps me think outside the box and we mostly find a way.

Hi,

I won't be the best help as my ASD son had fugue states not meltdowns (I realise how lucky we were in that respect) But what I did learn was early intervention in all problematic behaviour is the only way to make progress.

I'd start discussing his rigidity with him - very gently, not at all critically - using curiosity and puzzlement. I also think mirroring is fine with ASD children who need help learning how their behaviour affects others. So I might say: we like some programmes on other channels. How would you feel if I screamed and screamed every time ITV was on, because I like BBC better? Just discuss it. Ask him to help solve the problem so everyone's needs are met. Help him treat it like a puzzle that needs solving.

Same with the battery. 'You like it to be above 60%. We know this. How else could you react if it drops below 60%, other than screaming? Can you think of some other ways to react?' You could also get him a portable charger that he's in charge of topping up. You could also explain that letting the battery run right down occasionally helps lengthen its life. (DH told me this so I assume it is true! )

Not saying it will work, and am pretty sure it won't work the first 10 or 20 times you do it, but slow repeated focus on growing away from problematic behaviour and towards socially acceptable behaviour helped us and DS. You need the patience of a saint, but you probably have that already!

@DrRuthGalloway Totally agree. It is so unfair on asd children to assume they can't learn and develop in socially desirable ways. They can. It just (ime) tales about 1000 times longer than it does for NT children. No exaggeration. I had to reinforce desirable behavioural patterns very gently about a thousand times before they stuck. But they did stick, and as a result he lives a very fulfilling, happy adult life, totally assimilated socially.

Mine too! I have no dx but have 2 autistic kids, an autistic father and autistic sister.

Don't get me wrong I am not up for making autistic kids as close to a facsimile of NT as possible via "social skills groups" and the like. I believe in the value of autistic thinking, autistic friendships etc

It's just somewhere that has got twisted to "anything that tries to alter the way an autistic child is currently managing is harmful". Obviously it can be, if done cruelly or without compassion. But starting where a child is, explaining things, making rules, making requests, just saying "sorry, we can't do that; it would be lovely if we can, but we cannot" - these things are not cruel. Parenting is about fitting for life, not keeping children happy in the short term.