My child is turning into a nightmare and I don’t know how to stop it

[QueenSmartiePants]

Not sure if I’m after advice or support or just ranting at this point. My son is ten, he’s autistic and has complex additional needs. He’s always been difficult to parent (the autism, PDA etc means standard parenting doesn’t really work) but I’ve managed well I think. I regularly get compliments on his good behaviour and manners etc. but over the last few months he’s just awful. He won’t listen, doesn’t do as he’s told, he answers back constantly, he blows raspberries and shouts random words in response to being told off. I’ve tried talking to him when he’s in a good mood, I’ve tried shouting, I’ve tried consequences/punishments and nothing works. He doesn’t care about anything (tech, toys, gaming etc) so I can’t remove things, he rarely has play dates or friends over so I can’t even threaten that.

he will literally just ignore me when told to do something. He’s always been amazing at bedtime, now he spends hours messing around and shouting, sitting at the top of the stairs shouting. It’s waking his siblings, he doesn’t care. He won’t move. He’s too big for me to physically move, and a physical altercation isn’t going to help either of us.

I feel like I’m trapped, I’m a single parent and there’s no escape. If it was a man, I’d call it an abusive relationship and leave. But I can’t because it’s my child. I don’t want to spend another 8+ years like this. His needs mean he is unlikely to go to university. I feel so low, I never get the nice lovely child for more than an hour and then it’s back to the shouting, demands, arguing, spitting. Is this a stage? Is there a parenting technique to make him behave better? Am I failing as a mum and that’s allowing him to do this?

I might be barking up the wrong tree here, but...have you asked him what he thinks, in his more calm moments? If so, what did he say?

I mean, the heightened state is probably pretty unpleasant for him too (it sounds like it's a weird half-way point between shutdown and meltdown, but I could be way off-base there), so it's entirely possible that you might be able to make a breakthrough just by getting him to try to analyse his own behaviour from the inside.

To add to this - this is the approach ADHD Dude takes and is one of the reasons we like it.
Play therapy/talking therapy/counselling are unlikely to be helpful for a child who has social communication issues.

I haven't read the whole thread, but my DD, who is autistic and adhd (high masking) turned into a bit of a devil around this age. Or rather, it was when the exhaustion of a lifetime of masking and trying to figure out and fit into the world finally caught up with her.

She'd always been a bit 'rude' and prone to answering back and storming off to school most mornings, but it ramped up hugely at 10-11. Then the wheels came off big time when she started secondary - nightly bedtime meltdowns, shouting at midnight, keeping younger sibling up or waking them up. It was absolutely awful and I posted on here about it many a time.

Anyway - it's a relatively classic pattern for ND kids, especially ones that are high masking - to stop coping around this age. Combination of puberty hormones, school and social life becoming more demanding and all the changes that anyway happen for all kids at this age (seeking more independence and separation from their parental figures).

She's now in yr 8 and things are so, so much better. A combination of us and her learning more about how her brain works and respecting that. Spoons theory has helped us a lot. As has me learning not to lose my shit when she loses hers, but instead regulating myself so that she can learn to regulate. Respecting her requests for things like later bedtimes. Accepting that she will always go to sleep later than we'd like her to. Just a bit of 'radical acceptance' all round. Oh, and really recognising that when things are bad and she's having a meltdown at midnight, it is far, far worse for her than it us for the rest of us. So - a lot of kindness and compassion I guess.

It is incredibly tough. x

I know this won't help right now. But if he is behaving ok at school and melting down at home then try and take some solace on the fact it is because he feels safe enough in his relationship with you that he can let out all those feelings of frustration etc that he has held in all day.

You don't give his age, but you say 8+ years of it so if am guessing he is around 10. Is he Y6 or Y5? If Y6 and England based then they will be ramping up the pace towards SAT's. The additional stress especially if he has global delay may well be the cause of this current disregulation. Have school involved any external agencies to help? If not talk to the senco about support. We have a system called PY4P that can be involved to support kids and families in these situations but at the very least school should be able to signpost you to help.

It is so hard, my godson has ADHD/PDA/ODD and his unable to attend school as he simply cannot act in a dage manner. He has been on roll but unable to attend since feb 25 I know his mum is finding it incredibly hard.

Try a later bedtime? 8pm is very early for a 10 year old. My 9 year old goes to bed at 10/10.30pm. She can’t sleep earlier so there’s no point trying to force it.

Hi, Just wanted to say you sound like a superhero and he probably has to mask all day and then comes home to his safe place with his lovely mum and can let loose. Not that it makes you feel any better.
Do you have a visual routine in place for night time? I think i would start off with a solid visual night time routine and come up with different activities together that would help. This may help to regulate. Also set timers for the next task or activity so he knows once the timer goes off that has ended. Have a craft box to hand so that he can get on with making things when he is bored. Also if not yet considered do you have a sensory den? You can get blackout tents fill them with sensory lights and that can be his calm space maybe offer headphones and music. His routine doesn't always have to be about fun it can be doing the washing with mum for an hour. Or helping mum cook tomorrow's tea. I think having this set up prevents frustration.
Does he get any sensory feedback from swimming? This could be a good way to keep him active and get him tired of an evening. I'm sorry there is a whole system out there completely letting parents like you down. You need a break too and perhaps as time goes on you may consider introducing a PA for things such as cinema trips/horse riding/soft plays. That way your child is building trust with someone outside the house and you are getting a much needed break.

Some thoughts You are doing some great things so

1. continue to do what you are doing- consistency matters and just because it didn’t work today does not mean it won’t work tomorrow and tomorrow
2. ADHD and Autism come together- medication for ADHD is life changing- go for the diagnosis option- you may need an EHPC in the future.
3. He is wired differently, what’s ‘normal’ for others might not be for him
4. Kids with ADHD really struggle to sleep well- what is his bedtime routine and how could that be adapted to his needs?
5. Don’t send him to bed, instead let him go into his room- no computers- monitor what times he falls asleep.
6. Avoid unnecessary conflict - in the end when the shouting is over, it often really doesn’t matter.
7. Give him and yourself take up time- try not to let things escalate. Explain to him that you won’t be engaging with him until you both have calmed down and allow him to call Time Out also so he has permission to walk away when things are always getting heated- this is a good life skill
8. Don’t sweat the small stuff when it comes to eating, brushing teeth before bed, tidying his bedroom,
9. Prepare him in advance for what’s going to happen, so he can get used to the idea before it becomes a conflict
10. People with ADHD and Autism are at risk of severe MH/ adult suicide issues- do all you can to keep things calm, quiet, happy and affirming. At all times remember how much you love him- even when he is shouting the house down.

I have an adult son with a diagnosis like yours. He is turning into a lovely man and I am very proud of him. He and I clashed ( too similar) non-stop throughout his childhood. His Dad never argued with him- and he never argued with his dad- now they are best friends. He barely tolerates me- I wish I’d know then what I know now. Good luck.

PDA gets a LOT worse when an autistic person is approaching or experiencing a state of burnout/shutdown. Is there anything more you can do to reduce demands for a while? I would imagine its probably school related. Hugs. PDA kids are so hard and almost nobody gets it.

When was the ECHP refused? Are you still in time to appeal? If not get another application in. With secondary school around the corner this is vital.

Some councils are refusing ECHP's due to funding issues. Appeals often favour the parents. It's dreadful but over a decade of under investment has broken the system.

Came here to ask if he has an ADHD diagnosis. The meds are life-changing.

Thanks everyone. I’ve read through your responses and will answer later. He’s woken up still in a bad mood and is refusing to eat or get ready so now I’ve got to try an get him out to school somehow

10 to 15 was horrendous for us ,we had home visits from CAMHS weekly.
School was causing the upset ,he couldn't cope ,was constantly in trouble, constantly getting suspended..he was expelled twice ,once from mainstream once from special school..
By 15 he had tutors at home and things settled down..but we had to go no / low demand..any demands placed on him were beyond anything he could cope with ..I had a baby at the time ,and social services would of took the baby ,not him ,if anyone got hurt ,so we went down the no demands route to keep everyone safe and to keep the family together..CAMHS very supportive of this ,mainly because he had very nearly been sectioned at age 14....it was an absolutely horrendous time .
Your young person may well have PDA .I read various books on PAD and the explosive child ,I remember reading that one .
All that helped us was no demands ..we were very lucky ,he loved having his tutors come and enjoyed learning,just couldn't cope with school

We have had tricky times at bedtime too. Ive put everyone in the house to bed, turned off all the lights downstairs and then gone to bed myself, faking sleep if I have to. This method has been most effective for me

Autism (PDA profile), plus adhd (if he has it) is the toughest combination to deal with. I'm going to make the assumption that you've seen success using PDA specific strategies. In which case, it is very likely that heightened anxiety is causing the behaviour to be so difficult to manage. For children with this profile, school without additional support can feel unbearable - indeed very many PDAers have EBSA. It sounds like he's escalating towards shutdown, if he's not already there.

Once they reach this level of dysregulation, the only thing you can really do is reduce as many daily demands and transitions as possible to let them recover. I'd also recommend that you pursue an ehcp, and not take no for an answer.

Melatonin gummies if he's not sleeping will help give you more of a chance to get him to do the basics during the day. Looks at adhd assessment, because medication (either adhd specific meds or anxiety management meds) can be life changing if he does have the audhd PDA combination.

Was your son ever considered for a special school place? So many SN children flourish there - they are autism-focused in a way mainstream schools are not. I hope your morning doesn't go too badly.

Hey OP. I have a 5 yo son with ASD and PDA profile. Different ages but will add if he's having trouble getting to sleep have you considered getting a referral to pediatrician and asking for melatonin? My son has never been able to fall asleep, bedtime can go on for up to 3 hours with him eventually crashing out at 10pm. We have had terrible problems dealing with aggression, tantrums, violence, rigid behaviour and since taking melatonin his behaviour has dramatically improved. He gets an extra 2 hours sleep per night and his capacity to cope with daily demands has increased. Sleep is the foundation of good health and i think these things are circular so I would personally try that to see if it helps. We are also looking into gut and brain health to check for deficiencies to see if there's anything we can improve upon physiologically that might help. But DS has a very limited diet. Alternatively is there anything that helps him regulate that you could include at home? Bit different with my DS because of his age but trampoline, crash pads, spinning seat, bean bags etc.

Would second looking at the ADHD diagnosis if it opens the door to trying medication, as it's hugely reduced the dysregulation for my son.

When they are constantly dysregulated it's basically impossible to manage because they will see threat in everything. I actually wonder whether PDA is not just chronic dysregulation caused by trying to live as a ND person in a world of NT expectations.

You can get somewhere with the Ross Greene approach but it will be extremely slow going if he won't talk about anything as you essentially have to use trial and error.

I'm actually included to see PDA as perseveration - continuing to do the same thing is much easier if you have poor executive functioning than switching track.

For the not getting up, I would usually (though it's rare for us at the moment) take the duvet away and then ignore, but with no chance of screens. Breakfast, dressed then TV if time. Stand in the front door for a bit but ignoring. Or sit on the front doorstep if you're walking/in the car if you aren't reading a book until the DC in question musters their resolve. Anxiety is in the mix for my DS too so he has to talk himself round sometimes we feel.