To be done with autism

[stargirl1701]

I'm done with it.

DD1 is autistic. She is nearly 11, diagnosed at 5. We have made numerous adjustments at home. School have made numerous adjustments. All to no avail.

She swore and kicked her little sister yesterday. Immediate consequence no screens for 24 hours and sent to her room. Of course, meltdown. 2 HOURS later after punching and kicking me she complies.

I'm done.

The needs of the many are now coming first. I'm on my sixth anti-depressant, DD2 is terrified in her own home, DH spends his life walking the dog trying to remain calm in the face is extreme provocation.

I'm done. No more. The 3 of us are coming first for the first time in more than a decade. I'm done.

No more empathy. No more trying to understand. Done.

No matter what we do, she has violent meltdowns. She thinks of no-one but herself. Modelling doesn't work. Talking incidents through doesn't work. She won't use any strategy she has been taught to avoid a meltdown.

I'm done. Time to live our lives.

No, that’s how you interpreted it. I’m not suggesting anyone hits their child, but more wanted to point out to the OP that things can and will improve.

Says you. And you are nobody of concern to me. At all.

agree with this.

I was diagnosed with autism as an adult. I was a very difficult child. Obviously now I know why I struggled so much. And I definitely gave my parents hell. I was never violent to them (back in the 80s they would have slapped me so I knew not to!), but I would hurt myself, break things, scream, be constantly upset and angry etc.
Even though my mum had no idea about autism she did her best. But. She was also strict. Hence the fact I knew how far I could push her before she would slap me. Now I'm not saying slapping is the answer, I totally disagree with slapping these days. But I do think children need to know where the boundary is. There absolutely needs to be a line and once that is crossed there is consequences. Saying you can't punish a child for being autistic is correct. But you can certainly punish behaviours that are over the line. And violence to family members should definitely be one. By the sounds of the description this is not a non verbal totally unaware child. Even a child with autism is capable to learning new rules and boundaries.
My mother was very good at teaching me that some times things can be compromised on or discussed and alternatives found and that sometimes it was OK to be upset about things you didn't like. But, sometimes you just had to suck it up and get on with it and learn appropriate behaviour. It took me a lot longer than others yes, I was very selfish until around 28 if I'm honest. But if my mother had just always let me get what I wanted I certainly wouldn't be the functioning adult I am now. Unfortunately the world won't pander to anyone at all times. Even people with disabilities. Because sometimes two people with differing disabilities and needs clash. And if neither has ever learned to accept they can't have their own way where does that leave them? So yes, I do think setting strict boundaries is helpful in childhood and it helps you learn the way of the world.

But things for this man's daughter improved after he hit her and physically forced her to do something she was scared of. Not a great example.

I have read the OP's posts on the thread.

There's no evidence in what OP has said that her daughter has PDA. PDA is very rare. Pervasive, illogical noncompliance hasn't been described.
Demand avoidance in autism is common, usually precipitated by anxiety or overwhelm.

OP firstly, what you are describing for your daughter is not punitive, except for forcing her to stay in her room. I would be inclined to move to timetabled access for both of your daughters to shared spaces, once everyone has calmed from this precipitating incident.

OP you say you have read Ross Greene, but you aren't talking like someone who has read Ross Greene. I am not saying you are lying, just that the messages don't seem to have dropped into place. It is a definite clash with teacher training, antecedents behaviour consequences type approaches. You are still talking about consequences and behaviours and not talking about expectations she is having difficulty meeting, lagging skills, and unsolved problems.

Ross Greene says kids do well when they can. There are expectations she is having difficulty meeting, and crucially, the expectation is not "don't attack your sister" as you list in the expectations you have identified for her. That is a hugely loaded phrasing which describes a behavioural consequence of the expectation she can't meet. Which is probably something like "lose a game with good sportsmanship" or "share screen time fairly" or "transition easily off the screen at the end of her designated time".
Attacking her sister at that point is just the symptom of the unsolved problem - it isn't the unsolved problem.

You can't do a plan B of a behavioural description, that is fundamental Greene. You must identify the lagging skill. You cannot plan B when you begin by inducing shame. And she is ashamed - hence huge self defensive meltdown .

Can you work out what the actual unsolved problem is?

She doesn't WANT to upset you all, you know.

@stargirl1701 I've no advice, but I hear you. My 11 yo is autistic and it's beyond hard at times. We're also in Scotland and have had difficulties getting support. We've experienced the violence, and felt the utter exhaustion that goes with it.

How do you find melatonin works for her? It makes mine drunk drowsy tired but sooooo lippy and controlling at bedtime, anytime, but particularly bedtime and dont get me started on teethbrushing 🤦‍♀️

Do you think the rest of us just love being ordered around? Everyone prefers to be asked and asked nicely! Ridiculous pathologising.

@LeafCuttingAnt

Yes, we try to get in early and use gross motor activities when we see it coming. The DDog has been amazing too. She reacts instinctively to DD1's build up.

But, this last few months have been beyond anything since Primary 1.

I read a fascinating paper that analysed the lack of linguistic reasoning/expression as a explanation for meltdowns. It's just figuring out what to do with that, I guess.

@stargirl1701 I work 1:1 with an extremely aggressive and violent child with ASD (and I think PDA but you can't get that diagnosis here). His parents asked their GP for a 6 week course of antipsychotic/tranquilising medication, and he is SO much better. It should not be used routinely for ASD but is indicated for aggression and violence in people who have autism. He is a little tired at times but he copes much better now, and his parents aren't trying to turn him over to SS now.

I'm sorry I've read a few more of your replies, it seems you have tried everything :( I don't think anyone else can suggest anything, except just understand how hard it is for you and hear you. I really hope you manage to one day get some help.

Hitting children is illegal in Scotland.

It's also a terrible idea!

@WhereIsMyGlasses

I hear you ❤️

We have a bedtime routine that has worked for many years. We need to time the melatonin so she is in bed when it 'hits'.

The transition to bedtime is tough. We used a visual TT initially but now it's like autopilot.

OP my eldest son had horrendous ADHD as a child and I suspect now he is autistic too but 30 years ago it wasn't diagnosed much. He has always been very difficult to deal with. He'd hit his older sister and he used to cut things. Mostly bed sheets but he cut the head off his sister's favourite teddy bear she'd had since birth. He cut my new coat I'd saved my birthday and Xmas money to buy and he dug holes out of his bedroom wall with a spoon. DH was always using filler and repainting. I lost count of the time his school rang for me to collect him as he'd caused mayhem or hit another child. He grew far worse during puberty. He was medicated for ADHD which did calm him down but he could not/and still struggles to see others points of view. Finally he did improve a lot after he was through puberty. It was as though someone flicked a switch. The aggression and hitting out stopped. I never thought he'd work as though reasonably intelligent he could not communicate properly and used to scream and shout for no apparent reason. Now as an adult he can still be thoughtless at times but he has a full time job driving a Class 1 lorry. He has a lovely gf and a home of his own he's buying with a mortgage. I found screen time made him worse and the specialist for ADHD told me to stop him gaming. In those days it was Mario Cart and Sonic the Hedgehog but I cut it out completely. TV was rationed and I got him doing lots of sport which is what the specialist told me to do. I think it did help him. Now as an adult he's decided he doesn't want children of his own in case they are like what he was like. He looks back and asks me how on earth I coped with him. He says he knows he couldn't cope with a child like that and knows it's often genetic. Luckily his gf has children, 2 late teens from her previous marriage and doesn't want more. DS gets on fine with his gf's children as they are all well behaved. I found being very firm helped DS but he was never diagnosed with autism although he still has a lot of sensory issues.

Well you sound like an extremely committed mother. It is slightly confusing though, from the first post it sounded like you absolutely hate your child and are at the end of your tether with her, but you are still arranging incredible trips for her, and wouldn't dream of taking them away.

@Confrontayshunme

Yes, I have left a voicemail with her Comm Paed.

By pandering do you mean meeting additional needs?

@LilyPark

I don't hate her. I hate violence. Hate it. I felt like I escaped when I left my childhood home but here I am back in the same situation.

It's not as painful. She is a child and I am an adult.

I'm done with living like this. If anyone else was attacking me like this I would have support.

I feel you. I have been there. My ASD child is now 20. 2-8 were hard, 9-16 impossible. 17 i was counting down the days till his 18th and could "wash my hands of him". At 18 however, he naturally calmed at bit, occasional outbursts, but tolerable, at 19 he found a job he loves, at 20 i enjoy spending time with him, for the first time in 18 years.

My advice is only pick battles. I only parented the essential parts with him, i ignored the rest. I did everything in my power to help him, from turning his bedroom into a gym with punching bags etc, to paying for private counselling twice a week for him as the NHS services were virtually none existent. I only stepped in when he was near siblings, and i would take them into my room lock the door and have a dance party or watch movies. He would steal, smash things, shout swear scream, punch walls, punch anything, throw things. He was abusive, to me, his siblings, everyone and everything around him.

IMHO strict wont work. It will antagonise and trigger an already angry child. Ignoring does work. Focus on your other child. My 2 thers hated that they were parented more strictly, they would have chores and responsibilities he didnt. However, they also got money and freedom, days out, holidays as they got older without him, they are much more ready for adult life now at 16 and 17 than he was. They are now understanding and appreciative of the childhod they had in comparison.

I understand being Done, but it wont work. I promise you. Pick battles. Ignore. and ride it out until you can be done or a change happens and you get your child back.

This is why I really feel for you in terms of it being hard to get permission to home Ed

You can do everything at home but you can’t control the school environment and it’s sounds like you are picking up the pieces constantly. Do you think she masks in school?

Our LA seem delighted when parents with SEN kids take them off roll, and actively push towards it even though they shouldn’t! It saves them having to meet their legal responsibilities.

Do you have EOTAS in Scotland? That is the only thing that has worked for us as DD is too academically capable for the specialist schools but also can’t cope anywhere with loud children who have challenging behaviour. It was a fight to get though.

Depends what it is surely? Is needing to kick the shit out of your sibling a need?

What a remarkable thread. Well done for hanging on in the face of some rather insensitive posters, OP.

I guess you have learned not to be reactive!

I think people are seeing the structure you are insisting on as punishment- perhaps because of your intensity when you described it- but it's clearly an age appropriate equivalent to a playpen or cot for a toddler.

A secure place which meets all their needs while allowing you the opportunity to be hands off for a time.

I love the way the suggestions- indeed instructions- rolled out, but you'd already read the books, been on the course, bought the equipment, tried the method...

Good on you, OP. You'll get there.

DS improved massively at 10. It could lighten up tomorrow.

I say this as someone with experience of autism you clearly have little to no understanding of it and need to learn more about your childs diagnosis in order to learn how to manage her complex needs. Her needs aren't being met and she is acting out. By the way autistic people dont respond to punishments and punishing them for a meltdown or acting out isn't going to work because they can't infer that they are being punished for their behaviour and for other reasons that i cant be arsed to get into.

Cancel the cheque!

for you, OP.

Having been where the op is right now, the methods she’s suggesting are unlikely to help.

Expecting the dd to manage to stop being violent by herself is naive at best.

If you know the precursors to a meltdown you can put in place strategies to stop them. If it’s still not stopping you look further back.

At the very basics when DD’s are together they cannot be left unsupervised at all, ever, so whichever adult is there is constantly ready to intervene.

Beyond that it’s trying to learn what’s setting her off, and heading it off before it takes hold, so eventually you get better at knowing what’s going on. If you can’t get to that point, and sometimes things get out of hand without you realising, you make 100% sure that they’re not together unsupervised, and you do what you can to separate them.

It’s hard being the sibling of an autistic child, but what do you suggest? There’s bugger all support, most parents don’t want their child put into care (because what will that set a disabled child up for?), so the best bet is to manage your own expectations of the situation (eg stop expecting an autistic child to manage their own emotions) and do whatever you need to do to not allow a child to be beaten.

I’ve been there. Sitting in a doorway to prevent angry ds getting to his brother, watching him like a hawk, never switching off ever. It’s shit, but the more effort you put into changing things for the benefit of the autistic child, the better it is for everyone in the family.