ASD and video games

[Mumtoboys1]

I'm at my wits end with what to do in this situation, my ASD 8 year old plays video games but absolutely rages when he doesnt win ( not winning in general has always been an issue) its just getting too much now i think ive just been blanking it out due to stress and the fact he doesn't want to do anything else. Every part of me wants to just ban games but I know that's not the root issue, I just can't cope with it anymore. I know parents say they don't limit screentime ect for special needs because it gives them a sense of control but he's choosing to do things he's not in control of which I don't understand why if it's making him so frustrated. He mustnt feel good but doesn't seem to want to stop or try something else. No part of him wants to try to get better at games either he just hates himself for losing straight away and says it's not fair and he's got no luck and everyone else is better than him

If anyone has any advice I would appreciate it thanks

Hmmm.

What games does he have and play? Often crap games have the most frustrating dynamics. Like the free ones where you get constantly pestered to buy more stuff.

So one option could be to get him minecraft/zelda/animal crossing or similar - big, open ended games with loads to explore and do and less obvious win/lose focus.

Or you could play with him? Minecraft is fab for this - create a world together and set off exploring it.

He does play Minecraft but the conflicting part is that he always finds and prefers to play games with difficult challenges rather than relaxing sandbox open world games like Minecraft ect. Even when he plays Minecraft for example with his brother he will find some kind of challenge in it like falling off the tallest blocks ect. I do play with him and we both enjoy It but still if he dies it doesn't make him any calmer that I'm playing and nothing goes through to him in that state. This is why I'm on the fence whether to have more control over what he plays/ if he plays at all because of the outbursts.

We've just taken away Roblox and his iPad/YouTube videos of Roblox to manage our son's rage and addiction @Mumtoboys1 . He is still a moody little git (I am going through a bad time with it all at the moment so please excuse my description of him) but having spent some time watching him play Roblox I think we are making the right decision. He is 9 ASD/ADHD btw, not too far off in age.

He is playing mario on our ancient N64 and Gameboy. Much better I think...

I would happily keep him away from Roblox for as long as we are able to control it... He smashed up his PC last week (as well as, over the course of a few days, bedroom walls, special toys, Lego peach, and ultimately... My heart). I feel like I have nothing left to give at the moment. But anyway I digress. It's whatever you are able to put up with in the cold turkey phase, I think.

My post doesn't even make any ordered sense, hopefully sending out some solidarity at the very least!

Thanks for your reply! We have banned Roblox too! Not so much due to rage he became obsessed with roast battles and being horrible to people got himself banned multiple times so eventually we banned it from the house.

Although you're struggling it's assuring to hear (as bad as that sounds) to know I'm not alone. It's so hard to deal with as it's his only hobby he's quite animated and 70% of his speech is echolalia which causes arguments with his younger brother as he says 'he keeps copying me' all day so it becomes easier to just let 8yo to go on computer to save arguments but then the rage happens on games!

He did used to play mario games and has got one for Christmas so hopefully things will take a turn for the better just can't get a control of his discomfort in losing, it's like he becomes a different person. It's obvious he can't control himself so we end up feeling fools for letting it happen in the first place.

I know parents say they don't limit screentime ect for special needs

I don't agree with this. Anything that causes him to dysregulate probably needs to be limited for now.

Natural consequences could apply here - if he can't play it without being angry then you both need to find a new way. This might be only playing by himself, or only playing for half an hour, only playing at a certain time when he's calmer, or he might have some ideas?

Then maybe see what other special interests can be encouraged?

@Mumtoboys1 sorry I never saw your response to me!

How has Xmas been?

We managed a 3 week Roblox pause but then Santa must got him some Roblox pet simulator code things before Roblox was banned... So he has had some time on the iPad since Xmas day but not too much. He just finds other devices in its absence but like I said, I prefer mario and other things that aren't connected to the internet as they don't seem to bring out the same level of rage and anxiety.

We also tried a couple of days without his ADHD medication to see if he would eat more than a bag of wotsits and to see if he'd sleep. It's hard to ever know what the effects of anything are as there hasn't been a period of "ok" in such a long time now. Next thing looming over us is him starting a new school after the hols. So any odd behaviour attributed to that...

But sorry anyway, I am rambling, mainly wanted to see if things have got better for you!

And I'm glad I reassured you a bit, of course no one wants to hear anyone else is struggling but it's always good to talk to other parents of ASD children for solidarity and understanding!

I know that's where the struggle is it seems to be the only thing that has any kind of structure even though alot of the time it's chaos! Him and his younger brother completely clash so doing things all together is a nightmare and when he's not on games that's all he's asking to do

@ValBiro We too have had some Roblox at Christmas! And same here with trying to find other game alternatives such as one player games or not anything online with too much competition. Just doesn't seem to pay it attention if he doesn't already 'know' it, seems to be a common theme in not wanting to try or try new things. Didn't have a clue on what to get him for Christmas either as he didn't tell us anything as usual so I felt terrible !

Hope new school goes well, does he go to special needs school ? We are homeschooling right now as he couldn't cope with mainstream but his EHCP got rejected which made things worse the help I was trying to get for him couldn't happen because of short staff.

He is starting at a generalised SEN/PRU/SEMH school. Not mainstream, not quite the Autism-specific school we'd been rooting for, but he has been out of school for pretty much 2 years now so we are giving it a go, as homeschooling just didn't work for us (I tip my hat to you!). I'm not filled with hope but trying to be as positive as possible for him.

The EHCP is touted as the holy grail but if I'm honest with you - and this shouldn't put you off pursuing it, but make sure it's true and accurate! - I wish I could just rip his one up. It describes the story of an ASD. child experiencing repeated trauma in an environment (mainstream school) that couldn't meet his needs, and all the horrible ways that trauma manifested. It is a useless, political document. It serves no positive purpose from what I can see as it has marked him as a bad apple. The schools that rejected us - I am sure of this - took one look and said "no thanks, not this type of autistic kid".

We called for an emergency review but the LEA won't budge and despite having never met our son, think they know best, and based on absolutely nothing (funding) are plonking him in a PRU. They have been awful, if I'm honest.

Pursue the EHCP but make sure it is RIGHT!

@ValBiro homeschooling has ruined me but like you I'd be dreading the transition back into it. I got that impression with the EHCP process, like what if things change? Things change all the time even after I filled it all out I kept wanting to add more and change things. I'll still be applying for another one as I think he definitely needs to go back to some form of educational setting and not mainstream!

EHCPs are reviewed at least annually and can be amended. And early reviews can be requested. So, don’t worry about things changing.

EHCPs can provide DC with support, including therapies, they wouldn’t otherwise receive. Unless the school is wholly independent there are limited reasons the LA can refuse to name your preference. You don’t need them to offer a place and they can be named even if they disagree. And if the LA refuse to name your preferred school or don’t include all the necessary provision you can appeal.

In the meantime, if you don’t want to/can’t EHE inform the LA you are no longer EHEing and they need to make arrangements. If MS isn’t suitable this can be alternative provision.

@Mumtoboys1 Everyone's journey is slightly different with different battles. I know from reading on here and in the news that people battle to get the EHCP. We didn't experience this, we had a lot of input from the school as they were desperate for funding to support them (to support THEM). They exaggerated a lot of the reports and were quite heavy-handed in their descriptions... To secure funding, they told us. We have to make it seem as bad as possible, they told us. I mean... It was pretty bad, the trauma he was experiencing. But we were naïve and didn't realise once they finally washed their hands of him that bloody EHCP would follow him around like a ball and chain. It has tarred him. It's an excruciating read, so much of it isn't even true. But because "camhs said it" or this or that professional said it, there was only so much we were "allowed" to redact. Like... This is OUR document about OUR son.

I am probably not the best person to talk to about EHCPs as you might be able to tell, I am still very angry about it all, but also deflated and beaten by it to. There are only so many battles you can fight at once, and we just have to go day by day with him really. What's right in front of us now? Computer games and is the medication working and oh my god he is starting at a new school next week. That sort of thing. Fighting the good fight on top of everything else (other kids and work etc etc!) is demoralising and exhausting.

Hope you have a good day tomorrow OP, a nice end to the year? We are spending it with family during the day, lots of cousins. Should be nice. Focus on the positive ❤️

If the EHCP isn’t accurate have you appealed?

Hi @KeepGoingThomas ... We can't do it at the moment. We both hit rock bottom in terms of our MH. DH is the one who did the bulk of the emailing and organising and rallying and once he waved the white flag I went down with him.

Have you appealed an EHCP?

Perhaps you have, but a large part of dealing with these things involves banging your head against a wall repeatedly. All the doors shutting in our faces. And then the threat of a year to tribunal... In the meantime, what happens with the child? He misses out on another year of school, his parents are on their knees, the siblings suffer (more than they have already!)

Have you appealed an EHCP?

Yes, more than once and supported hundreds of others to appeal. The sad reality is DC whose parents know the system and advocate for them get better support. It shouldn’t be like that, but it isn’t going to change in the foreseeable future, unfortunately.

Fine if you don’t want to appeal, but I mentioned appealing because your posts imply you think the EHCP is inaccurate but there is nothing you can do about it, which isn’t the case. If the EHCP is in accurate you could have appealed when it was finalised. In order to get the right of appeal again you could request an early review. Unfortunately, if LA refuse an early review there’s no right of appeal. You would have to wait until the annual review or request a reassessment of needs (which does come with the right of appeal if refused).

In the meantime, what happens with the child?

The current EHCP remains in force whilst appealing, so whatever is happening now continues to happen. An appeal doesn’t change that.

He misses out on another year of school,

I think you are confused, appealing doesn’t mean missing another year of school. The EHCP remains in force. Whatever is happening now continues to happen. And, appeal or no appeal, if CSA pupils can’t attend school full-time the LA has a statutory duty to ensure a suitable, full-time education is received

Siblings are less likely to suffer if there is an EHCP detailing, specifying and quantifying all the necessary provision because home life improves for all if the disabled DC’s needs are better met at school.

I know you are not purposely implying that we haven't attempted to advocate or that we just can't be bothered, but without going into the detailed specifics of how we have got where we are, appeal isn't a useful option for us at the moment.

The EHCP would have remained in place while we are going through the process of appeal... That would have been the biggest problem of all, because the current EHCP meant the schools we parents believe would be the best fit for our son were rejecting our applications, meaning he didn't have a school place or a supportive EHCP.

Hence him ending up in a PRU. Because the LEA believe they are satisfying their statutory duty to ensure a suitable, full-time education is received by sticking him in there. I think you know as well as I do though that there just aren't enough autism school places nationally, the LEA knows this too... It's a stalemate of sorts. But "job done" for them, case completed. I just have to have faith he'll pull through and cope there. I don't want to have to have a "told you so" moment with the LEA when it all comes crashing down. It will give me no satisfaction whatsoever.

I understand fully what a functioning EHCP is supposed to do, but we have been through 2 years of hell and frankly, something had to give. This is the reality of our "now"!

You clearly don’t want to appeal, which as I posted is fine, but whether you appealed or not the current EHCP would be in place so not appealing because the current EHCP would be in place is baffling.

Especially as part of your complaint is the schools are refusing to admit, when the remedy for the LA refusing to name your preference (unless the school is wholly independent they can be named against their will) is appeal. Unless wholly independent being ‘full’ on its own is not enough of a reason not to name parental preference and appealing is the way to force this.

If the PRU isn’t suitable, which you don’t seem to think it is, it doesn’t discharge the LA’s duty under s.19 of the Education Act 1996 and ultimately if it isn’t suitable you could enforce other provision.

All the autism schools are independent. They have all said no.

We are not appealing because there is only so much we can mentally deal with, not because we don't care or because we can't bothered or don't understand the implications. We have had to deal with a lot of parent blaming... "You haven't done this or that or xyz or jumped through this hoop". It is hard for you to advise without the whole picture, which I haven't given. And actually I'm not seeking advice, I was just trying to offer mine to the OP (core message - don't sign off on anything you are not 100% on board with!)

I did not day you don’t care or can’t be bothered. Do not put words in my mouth. I have only responded to your posts because they implied you couldn’t do anything about a poor EHCP, which isn’t correct, and that an unsuitable PRU discharges the LA’s duty, when it doesn’t.

For those people where independents are wholly independent rather than s41 independents (where an offer of a place isn’t required) and there are no other suitable schools there is EOTAS.

I'm sorry if it appeared I was putting words in your mouth. I know you are trying to help but you do not know the intricacies of our particular situation.

If you've been through all this yourself you will know how difficult it is to be constantly told "no" but at the same time, "you're not doing it right, try again, try harder" so let's just leave it here, please.

I was just trying to offer some off the cuff advice to the OP, I probably said too much but not enough but that's because i wasn't actually seeking advice myself.

I did not say “you're not doing it right, try again, try harder" either.

I was only responding to your posts so the OP didn’t get the wrong impression about EHCPs and think she couldn’t do anything about an inaccurate and poor EHCP because that isn’t correct, so even though you don’t want advice I would post the same for the benefit of the OP and anyone else reading.