to not know how to deal with DS? (Autism and Violence)

[1001Problems]

DS1 is 12. Over the last few years we have been wondering if he possibly has autistic traits but since puberty hit and then with the move to secondary school it is like living with Jekyll and Hyde.

We believe he has Pathological Demand Avoidance Autism - complete meltdowns triggered by requests/need to perform normal tasks. With DS this is homework and any household chores but is starting to escalate to things like getting dressed or putting shoes on. He is highly intelligent (in the 'gifted' category) hence it taking us so long to realise autism was the most likely cause, before the sudden violence in the last 12-18 months we just thought it was quirks of his gifted-ness.

The issue is his meltdowns are violent and directed at his siblings, mostly DD (10). He will then pummel DH or I if we get between him and his 'target'. It is now a regular situation for us to be barricading the younger children in a room while he beats us to try and get through.

I can find no help or information on what to do with a tween who physically attacks and keeps following you to keep attacking. Everything says 'back off, leave them to calm down' but he wont leave us! He keeps attacking until we get in the car and drive off leaving him home alone.

Has anyone got experience of this? Can anyone give some advice on dealing with this? DH and I are on our knees, our younger DC are scared of DS.

I have another appointment to talk with the GP, last time they sent us off for a 3 month wait for Teens in Crisis, 8 weeks of that to be told he doesnt have a problem, she wont refer him and that 'no-one will be interested in a family dynamic issue')

We have a couple of internal cameras in the house. We only use them when we are away. I am thinking something like a dog camera or similar that could be left on in a safe place then show the footage to GP, HT, Senco? Perhaps if they can see what is actually happening they would be more willing to help.

It's nice that he is cuddly but what does he say about the outbursts afterwards? It might be very difficult to articulate but is he up for working with you to reduce them?

Often this is less about the immediate trigger - "the straw that broke the camel's back" - and more about the fact he was already at breaking point. It's a long term thing to gradually teach him to recognise when he is about to explode and do something differently. Even if he's embarrassed and will deny it, if you offer to help him reduce these incidents and feelings he will likely be up for it. Once the outburst had happened things have already gone wrong. The question is how to try to head off the next one.

I hope you get some professional help but unfortunately a diagnosis is just a diagnosis. Don't wait on that to provide solutions. I would start by reading "The Explosive Child" if you haven't already.

Can you film it? Then at least you have evidence to show to GP etc. Could you go an see a private child psychologist for a diagnosis, so that you have something to support you when you wrestle with NHS services? A private child psychiatrist will charge about £240 for a consultation and diagnosis/report, so quite a lot of money but might be money well spent to help you get anywhere. As a rule of thumb, he is likely to experience stressors at school and/or home that triggers his behaviour. When he is calm, can you make a list of all the things he finds difficult (e.g. noise, interacting with friends/teachers, academic demands, navigating a larger school building, siblings invading his privacy, stressed/anxious parents ...) and then see if there are things you/school/he can do to manage/eliminate the stressors. All easier said then done, of course. Feeling really sorry to hear this as it is a horrible situation. DD has ASD and can get violent when triggered. We never got anywhere with our GP and the NHS, but luckily could go private and school councillor, Senior, class teacher have been amazing, plus little things at home like noise cancelling headphones, strict adherence to her routines, a very forgiving younger sibling, trying hard to keep a very calm, predictable atmosphere (e.g. no parental disagreements, no rushing, planning in lots of extra time, not expecting dd to take part in family outings/take her along to supermarket/clothes shopping only over the internet, always the same favourite foods she likes, letting her eat on her own, not forcing conversations/family interactions when she needs privacy/space) at home all helped. Living with an autistic child goes against the instinct of what we think love/family life is: hugs, discussion at dinner table, cuddles, kisses, family outings, sometimes a bit of parental shouting, siblings' plastic toys, any foods/cleaning products that supposedly smell wrong, sun light - all this is kryptonite to many autistic children.

My dd is like you describe but it wasn't sudden, she was diagnosed autistic at 2. She's incredibly bright but unable to cope with the stimuli around her, she's learned better coping mechanisms now but at 11/12 it was a nightmare.

However many children do struggle at this age and they aren't all autistic, there's many causes including just hormones. Do demand a referral for help but trust your gp as to which service is better - autism has become the go to suspected diagnosis but in reality there's so many things it could be, I actually think my DD's team have got it wrong and it's something different, she's so atypical.

SENCO not Senior

I would query if his school is the right place for him. He must have so many demands on him during the day.

I can only tell you what we do. We do lots of work when dc are calm on managing emotions and feelings and rage. Helping them learn their triggers, what throws them into rages. Identifying when the feelings start. Teaching them to go to their safe space where no one is allowed to talk to them or go near them when they feel the rage

I presume you’re already looking at triggers?
He sounds similar to my slightly younger one.

We have identified transitions as a trigger point so have lots of warnings that something is going to happen. We also bring him off fortnite gently via 15 minutes of YouTube.

Do you want any advice on that sort of thing?

I agree that most of the advice is to leave them to it, but my youngest and eldest will follow you and keep the argument going.

We have had some success with sympathising. Sometimes they just need to have their side heard.

I have an autistic teen like this, from zero to destructive in seconds. Also highly intelligent but severe anxiety led to removal from school.
We have learnt that approaching them once they are mid-meltdown will result in a push or shove, nothing more than that (yet) so have leant to back off rather than try and intervene.
Having said that it's incredibly difficult to impose no demands within normal family life.
Is he noticeably calmer during school holidays?

hm I'm going slightly against the grain here im not doubting the dx but there will be annoying people at school but no violence there, but attacks much younger smaller siblings🤔

im suggesting he may have more control over his actions than you've been led to believe,

my sibling has severe ASD, mentally disabled during a meltdown would lash out at ANYONE, an older relative, someone driving etc because she has no understanding or impulse control, id be taking a note of how much he can control then hopefully you can work with that, i know masking is a thing but that level of awareness can be worked with.

@BlackeyedSusan

Talk to DD. She has got to stop whatever it is that triggers him. If she does it deliberately she gets punished too. Be aware she may be neurodiverse too and may be stimming.

Keep them as separate as possible. Had to do that with mine.

Seriously? You're laying the blame on this at the dd who from OP posts is triggering him just by being around. And she's to be punished for this?!

And maybe try to talk to him about what stresses him while driving in the car/gaming/walking side by side, not while looking at him/sitting opposite. At least my dd wouldn't like being looked at while talking.

I have been there, it's awful isn't it. I regularly had to send youngest DD to SIL for the night as she was so scared. He would never have hurt her though.

I contacted social services early help, they sent us a barnados support worker who did a lot of anger management work with him.

He wouldn't engage with CAMHS but finally had an assessment with them after 2 years of waiting and was diagnosed ASD and ADHD.

Things are much better now. He retreats when he feels like he is losing control of his temper and hasn't been physically violent to us in a few years.

It's a bloody hard road and I know that right now you feel helpless and like you can't cope. It's an awful awful feeling. But I would advise you to reach out to anyone and everyone for help. The NAPCC have a helpline for adults (not child line) where you could get some support and advice, don't be scared of reaching out to social services, this is what they are there for! Speak to support services at DDs school. Our DDs school were fantastic at giving her an outlet to express her worries and fears.

He will come out the other side. And you can look back on this as just a horrible memory.

My DD12 has ADHD and ASD.

She can be explosive and occasionally violent at home too. But it's way better since she's been in private school because of the small class sizes and less noise. She's also on medication on school days. She found masking exhausting and the noise in classes of 30 unbearable.

Sometimes just hugging her works, sometimes not. Try and remember he is not in control and shaming them doesn't help.

You need to get him assessed. I can't stress this enough because otherwise any advice is just potluck.

Waiting times are terrible, if you can afford to go private do it.

It might help to look very closely at the melt downs and see if there is any pattern. What happens just before them? Do they tend to happen at a certain time of day? Is he tired? Hungry? What is he trying to communicate by attacking you? Is he able to explain what is going on for him at all afterwards?

Does he have his own room - I cannot begin to say how vital it is for him to have a space that is completely his. The other things are routine, routine, routine and lots of warning between every transition - for example a five minute warning before he needs to put his shoes on and leave if that is a flash point.

If he is demand avoidant then that is caused by anxiety and the best thing is to reduce asking him to do things - have natural consequences ie he doesn't do his homework then he gets in trouble at school or he doesn't do his chores then he doesn't get pocket money that is paid for doing them - remind him of the consequences and leave him to make the decision for himself. Let him take responsibility now he is at secondary school. But most children with PDA have a lot of problems at school - if they go at all as school refusal is common. Is this the case with your son? He might be able to mask somewhat at school but if there are no behavioural problems at school and he has no problem going there and working but does have a problem with doing homework then in my unqualified opinion that sounds more like autism than PDA.

My ds is autistic and very bright too. He has no problem going to school, works hard but coming home and doing homework/chores etc is a different matter. He isn't violent fortunately but the anger is there. Why does he have to do work at home when school if for work is a frequently asked question. Why does he have to revise when he does well and knows enough already? Why does he have to do chores when he has parents to do them?

Routine is vital for him. DS knows when he comes home he has 40 minutes to watch Star Trek then he has an hour to do homework, then 30 minutes to play computer games or read and then dinner. He absolutely needs that 40 minutes on his own in his room after school to watch Star trek and decompress. In the morning he reads for 30 minutes then gets ready and makes his own breakfast and packed lunch - he has a strict routine for himself to fit in as much reading as possible around what has to be done.

I would say with any assessment you need to look back at all those quirky things you put down to age or being gifted and note them all down - any sensory issues with sound/light/clothes, anything along the lines of taking things too literally, not understanding sarcasm, explaining jokes, how is he socially, any struggles with friendships, not understanding personal space - basically read up all you can and note down anything that you recognise him having done. Talk about melt downs but don't labour too hard on the violence - people with not much experience will put it down to him just being difficult especially if it is only recent and you're not mentioning any of the other things that are qualifiers for an ASD diagnosis. I don't think PDA is a stand alone diagnosis in the UK so I'd concentrate on getting him assessed for ASD. You need to really look back from when he was young at everything that was slightly different about him as subtle indicators will have been there all along. Good luck!

Thank you for everyone who has given helpful advice and suggestions. I really do appreciate them. I cant reply to each individual but will try and answer the questions:

Yes he is clearly masking at school/other external environments.

He adores his school, he chose it himself and loves his lessons.

I have spoken with school and they have said they will be understanding on homework. DS however gets stuck between 'dont want to do it' and 'dont want to not do it' and that overwhelms him. I will contact school again and ask if a break from any homework can be arranged in the short term.

Our upstairs doors are not strong enough for locks. We have a playroom downstairs and I will arrange to get a lock fitted to that. I have avoided locks due to worries about fire safety but accept that DS is currently a greater risk.

Triggers - asking to do any task/chore. requirement to do homework. we have removed all house chores, I tidy his room, do his laundry etc. We give long lead in times - '15 mins before school DS' etc. DD seems to trigger him just by existing. We no longer ask him to do homework, we say things like 'just so you know it's 2 hours to bed time if you want to do some homework' or similar.

i agree we need to help him identify the signs earlier so we can divert it. I think we need to make a 'safety plan' with the other DC so they know what to do and so we can all do the same thing each time.

I now have film of some outbursts and photos of the bruises to back up what is happening.

I'm not even going near the person who is victim blaming my DD.

DH and I are working so hard at remaining calm, not using the word 'no' but my god its so hard.

If you decide to film, be aware that anyone who doesn’t understand PDA may use it against you and dismiss it as angry child/crap parents.

I understand completely what BlackeyedSusan means - if his sibling is deliberately winding him up of course she must be stopped.
IME though just having a sibling breathing can be enough to trigger a meltdown. Far better to be proactive in keeping them apart.
One thing I’ve noticed about any professional advising about autism and managing siblings together - they’ve got nothing! The only way I’ve found that helps is to keep them apart as much as possible, and look into something like Lego therapy which can teach cooperation.

Oh also - obsessive interests sometimes in unusual things and talking AT you about his interests are typical traits, ie not noticing if you have lost interest or are trying to change the subject.

I wonder if he can do something if the siblings are annoying him that you could suggest - ie if you feel that they're annoying you go to your room and watch your favourite show on the laptop. The siblings should not be allowed in his room or to talk to him when he is in his room. That really needs to be his own private safe space. If he has an escape route where he can do something he loves before he explodes it could really help. It depends if he can recognise before it gets to the point of complete meltdown though.

I have read the explosive child which had some useful bits. but again, nothing that addresses how to cope with a combative, violent nearly teen who follows you to keep hitting you.

other historic ASD signs since he was little:

Very literal - eg: dont jump on the bed would be met with hopping and genuinely not understanding why we were cross.

Absorbs information like a sponge and wants to share huge in depth knowledge. doesnt understand why people dont want a half hour lecture on the subject - eg: I mistakenly called a board game character a snake when it is in fact a dragon. I had to listen to 25 mins of monologue about the differences between snakes and dragons before the game could continue.

only likes to wear soft joggers and t-shirts. the older and softer the better. Likes to be wrapped up in a blanket.

Very few friends. he has one very close friend who is ASD/gifted also. He doesnt understand why other people do things/think things that he feels are wrong.

Desperate need for things to be 'fair' and to feel justice has been served. Cannot cope if he feels someone has 'got away with' something.

he has his own room, opposite side of the house to DD. He now has his playstation/dvd player up there and all his belongings. he refuses to go up there when he is getting frustrated (i accept we are clearly too late spotting the signs at the moment)

DD has her own room, she uses it as much as she can but it is small. Obviously sometimes she gets fed up/has a bad day and pushes his buttons - all siblings do. but we routinely witness him walk into the room where DD is minding her own business and he will throw an elbow into her, or kick at her. She then will cry/shout out and he will turn and pummel her for 'trying to get him into trouble when he hasn't done anything'.

trying to answer as many questions as i can...

yes the other DC know not to go in his room without being invited.

at school he has a pastoral pass card which means he can show it and leave lessons if he feels overwhelmed and go to student support. he has used this on occassion.

His anxiety is getting worse.

“ I have read the explosive child which had some useful bits. but again, nothing that addresses how to cope with a combative, violent nearly teen who follows you to keep hitting you.”

It’s not a magic wand though.
The book teaches skills which need to be learnt.
There is another book by the same author called Lost in School which I think gives more scenarios and solutions, so that might be worth reading as well.

Once he’s at the following you and hitting you stage, whilst it’s awful for you, he’s beyond any strategies.

Does he have his own room? Can it be made into a safe space for him? Ds used to have curtains fixed over his bed like a tent so he could feel contained and safe.

When he’s got to the stage of hitting you use as few words as possible.

When he’s calm maybe discuss how you don’t like it when he hits, he probably doesn’t like it either (ds could never remember his violent outbursts), so he may be willing to go to his room when he starts to get angry - using scaling can help to learn when that point is - the incredible 5 point scale or similar is very helpful (don’t buy the book, google instead, the book is confusing!)

Feel free to pm me if you want more info on anything.

Ds is nearly 17 now and things are much better, we now instinctively do PDA parenting without having to think much about it, so whilst it sounds horrendous now, it will get better 💐

I also highly recommend this book - shop.autismwestmidlands.org.uk/products/sensory-profile-toolkit-a-sensory-resource-for-parents-of-children-with-autism
We used it to build up activities for ds after school to help him wind down.

Has he ever had an OT assessment? That might be worth doing.

Is your DD getting enough emotional support? Have you made her teachers aware of what's happening to her at home?
If she is being attacked by her brother - regardless of whether she's triggered him or not - then her home is no longer a safe place for her.
Is there a relative nearby she can stay with for a bit of peace, quiet & safety?
Whilst it's imperative that your son is getting help, please ensure your daughter needs aren't being ignored.

menopause thank you, this is a huge concern for me in all of this. DD's confidence in herself is so low because prior/during the violence he insults her, calls her stupid and an idiot. Yes i spoke to her teacher and she was very understanding and is making a point of 'bigging up' DD in class where she can.

My parents are local and they are being fantastic having any of the DC for the evening/sleepovers etc to give them/us a break.

I spend lots of quiet time with DD and one on one time out with her so she can really be herself and not worry that she will set him off. I'm looking into sibling support groups locally to see if that may help. I'm very worried for her mental state and I'm doing everything I can think of to support her.