ASC Child

[Daddd]

I’m finally openly admitting that I’m really struggling with my son who has an ASC diagnosis. He is 10 years old - a big heavy set lad and he is increasingly becoming more and more challenging. I have him every other weekend and half the opposing week and hugely struggle to support or parent him. It’s incredibly difficult as I work in this field and so can successfully cultivate relationships up to 25 year olds with the same diagnosis from age 5 but with him it is so so hard. Everyone he comes he is angry about something and tries to take it out on my physically and verbally or other family members. We have a routine he is aware of but has to dictate everything and if it’s something we have planned together then I always get the response of ‘no I’m not doing it’ and it’s really hard for it not to become a battle of wills. Consented don’t work with him as I become the ‘bad guy’ then and he becomes more volatile.

when he is here he just goes on about how great his mom is but she is a really difficult character to get on with and doesn’t ever admit he does anything at hers so help is difficult to obtain.

any advice would be hugely appreciated or recommendations for support. I feel like a complete failure as I write this. My partner is really supportive but I’m honestly not sure she knows what to do either. It’s so much harder when it is your own child.

thanks

Examples of behaviours include me going to his room and getting ‘no get out’ and shutting the door in my face

horrible comments about me being not a very nice person or if I was nicer he would be nicer etc

All he wants to do is sit and game and it’s really hard

he will often reply ‘I can do whatever I want thanks’ when challenged

Maybe put this in the wrong place to get help??

Its way past midnight :)

I will try to answer tomorrow

1. At work the children are probably masking for you, he isn't.
2. Do you use declarative language to interact with him to ease the demand avoidance?

It's v different at work vs at home.

Re "Get out" . We've made my daughters room her safe space and I respect that. I do "Get out".

Often at this point they are overwhelmed and beginning to melt down and them shouting to go away is their way of protecting you and themselves as they instinctively know they need space.

Have younseem the "spectrum gaming " guide to meltdowns? It's fantastic and really helps to de escalate a situation

So often we unintentionally inflame a situation.

Also you talk about them wanting things on their own terms. You do know that's their way of managing heightened anxiety don't you? It's overwhelm and their way of trying to manage an unmanageable (to them) situation.

Have you looked at "low demand parenting?"

Key thing is to remember it's them not coping, not managing and needing support.

Hello @Daddd

it's incredibly difficult and I don't have any magic wands sadly. We are in the middle of this with my older child, who's a few years ahead of yours. Shouting, swearing at me, endlessly breaking the rules, deceptiveness around screens. He does have a good heart but the form his autism takes creates a lot of challenges. We walk on eggshells.

Mainly the key is to be consistent, consistent, consistent ... which is far easier said than done. I hope that in the end he will internalize our not-very-demanding rules.

Also we have external help from an autism support centre. The guy comes once every week or two weeks, depending. He worked by talking to my eldest and establishing a rapport, then gradually in a very low key way encouraging more desirable behaviour. We have had some terrible flashpoints and explosions but the support worker helps a lot.

We also have rules (agreed when Support Worker, son and I sat together formally) and he needs to follow the rules or he gets a cross. Three crosses and no gaming for a week. Applying the rules is bloody difficult though as the explosiveness is extremely hard to handle.

Is there any chance of getting some help like we have? Every sympathy - walking on eggshells and being afraid of your own son is a bad way to live.

Agreed with other posters that his room may well be his safe space. But that doesn't mean he can just ignore what you say. We have ended up communicating with son more through Discord than talking :s

We also have the ability to turn off his internet access. That helped massively - if you say 'time to stop now and go to bed', it was huge arguments. If you say "fifteen minutes then the internet goes out" he accepts it better .... Mostly. Notably he copes better when given a 15 or 30 minute warning for anything than when he isn't. The bigger the event, the longer he needs the warning.

You say you work in the field, so maybe you know all this already. But I hope something will help.

Again, every sympathy. It's extremely difficult when this goes on and on and on.

There is a parenting special needs board on Mumsnet, maybe there's some help there too.

Thank you very much. I honestly feel like a failure after this weekend. Trying my hardest to keep calm; to use low
demand strategies and to talk through routines and explanations. He has his room as his safe space and I do ‘get out’ - but this is hard when it is 10/11pm and I’m tired too but he wants me there while he goes to sleep. It feels all a lot at the moment as I hugely want to do the right things but he is very angry about recent changes in his life and can’t process.

You're so not a failure it genuinely is really really hard. And really hard to work out what's "right" as well as its not always what's intuitive.

I think 10/11 is prime time for things to get harder and then again when they start secondary...

I've tried to find the spectrum gmaing nest approach quickly and just found this but I think it links through.
https://branstonca.lincs.sch.uk/wp-content/uploads/Spectrum-Gaming-Autism-and-Meltdowns9838.pdf.pdf

Rememebr the fight/flight/fawn/etc responses.... this starts before the meltdown.

So the angry words towards you is his fight/flight reflex and unlikely personal but him in "survival mode".

I think this really helps understand where they are coming from.

I hugely appreciate your advice. It’s so hard when people are constantly saying ‘what he does is choice’ and I know it isn’t but sometimes the more you hear it the more you feel pressured to do things you know aren’t right like over the top consequences etc. it’s even harder when the other parent does those things so he masks there and it all comes out here.

Oh the number of parents who will tut at you when he's struggling, or say 'this is the way to parent children' when they have not a jot of experience with an autistic child!

I don't say it, but in my head I think "give me advice when you have the faintest first clue what you're talking about"

I am not sure at all that there is choice in his behaviour at times. Other times I think there is. Often I don't have a clue if I'm doing things the right way or wrong. It's damn hard work.

I’m so grateful as you’re making me feel normal. Over the weekend things have got better - tonight he has settled to bed beautifully and told me I am the best dad ever so I’m thanking for small mercy’s as I really needed that today!

No that's the whole thing with autism.

I think of it a bit like an epileptic fit sometimes. You wouldn't blame someone with epilepsy for hitting someone on their way down and you'd give them space and not be cross with them afterwards but recognise they're exhausted and been through trauma.

Meltdowns (which may not look like kicking and screaming but shutdowns or angry words etc) are a coping mechanism. It's a sign the person is seriously not coping and it's a defence mechanism. A crisis. A child having a metdown is in crisis. A child experiencing a meltdown will likely feel awful, exhausted. They have been through a really really tough time.

This is why I like the spectrum gaming booklet (produced with actually autistic people) as it helps to see what helps when a child is in crisis mode (calm voice , removing stimulation) what doesn't help (threats, santctions/punishments) and about trying to prevent another crisis.

This isn't "pandering" this is survival and helping someone with a disability. We don't pander to wheelchair users to make buildings accessible. Making life manageable enough not to have a meltdown is really a bare minimum we should be providing for those who are autistic.

There is so much we can look at in terms of autistic overwhelm and about how it varies so what someone can cope with one day might be different another time.

The key is for our kids to know we've got their back. "You know last weekend, that really didn't go well did it? I know that must have been really tough for you. Do you know what we can do different?" (They may not have the insight to know but you can feel the difference with this approach to "why on earth did you play up last Saturday we can't have that again or we'll take your computer.")

Remember autistic kids may have trouble understanding what they're feeling and trouble communicating too so we shouldn't be putting all "the work" on a disabled child. It's on us to work out what is going on and what we can change to reduce demands/pressure and to make the environment calm for them.

Once we're out of crisis mode and life is ticking along that's when we can look at skill building. But not when someone's in crisis.

Neurowild is my absolute favourite autistic person who explains these things. She's a speech therapist in Australia and has fantastic visuals.

Hang onto when he says these things. This is the "real" him when he's regulated.

It's hard to see this when they're shouting or upset.

And yes all this is normal for being an autism parent as what other parents say/suggests doesn't work.

(See also "I just say that's for dinner and that's it. I don't pander....")

Like you, I work with some children and young people with similar profiles to your son, while also parenting my own PDA DC1. The PP who said the children we work with are masking is spot on. That's why it is so much easier.

Your son may be finding the transition to staying at yours tricky which is why it's easier tonight as he's settled in for the second night. DC1 finds any kind of change or transition intensely uncomfortable and compensates by seeking to control the environment and the people in it, often very forcefully.

Please don't take what your son says to heart: DC1 thinks I'm a gross hag most of the time, if what comes out of their mouth is anything to go by. It's not uncommon for DC1 to request an activity, outing or new piece of equipment, only to, as soon as it becomes available, vehemently reject it, even though I know they've been wanting x thing to happen for ages. This is especially tough, as I spend money and time trying to make things right for DC1, yet they often can't cope with the demand / expectation / pressure inherent in 'getting what you want'. I have to introduce new things obliquely in a very restrictive way in order to make them accessible to start with.

I too used to have to 'sit' with DC1 until they dropped off to sleep. As sleep was another transition, those bedtimes were often very fraught as they'd 'fight' me yet be dependent on me being there.

DC1 can turn on a penny if there is a perceived threat ‐and they're hyper-vigilant 24/7. One moment we can be goofing around, having a laugh, but then a dog walks by / hood blows off / DC2 laughs ‐any random thing, and the next thing DC1's face is a contorted mask of anxiety, spitting swears and insults. As soon as the situation is deemed safe again and the newness has worn off, we're back on feeling good again.

There are some incredible groups on FB which you may find reflective of your situation: I follow 'MissingTheMark' and Dr Naomi Fisher. Both talk a lot about education, but there is a wealth of wisdom, reassurance and validation of everyday life experiences too.

Oh the endless nights staying with them until they sleep .... yes.

Then there's need for time for yourself to wind down, but you have to get to bed on time or you'll be tired out at the start of the day and not have the wherewithal to be calm and reasonable and get it right all over again .... and then it's bedtime again, and you have to get them to sleep.....

You are not alone, @Daddd