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.

RESPITE

Sorry you and your family are going through this OP, I can hear your frustration. I'm am autistic and have an autistic nephew too. I know you said you've tried everything and I can only suggest what helps my nephew and myself. It's structure, I like to do the same things at the same time every day and so does my nephew, who has also been violent to his sister. Strangely enough, he has never attacked his mum. I did wonder if nephew's sister learnt the trigger points. Have you tried giving your child a home timetable? It may be worth a try, allow certain activities within time frames. Sorry if my suggestion sounds odd or you have tried this before.

For some autistic people, many autistic people's social difficulties stem from not knowing when to shut up and let the other person talk! Engaging with your household, especially about their special interest, is in no way stressful for the average autistic person.

I know this wasn’t aimed at me, sorry!

Does she have anything visual to remind her of these? Write a list for her of the absolutes, but don’t include don’t attack your sister (it’s a given that you don’t want her to do that, but telling her that may well s

OP, i sympathise, i do.

TBH, i think people are concerned about how YOU are reacting to this. You are allowed to be done, and you are allowed to run your house how you need to for all of your sakes.

I agree with the low input parenting. DS is 16, he has ASD, ADHD and some other issues.

He has his bedroom and a playroom where he spends all of his time (voluntarily i might add) the only place him and his sister interact is in the dining room, or occasionally if they're playing on a console i have in my room.

They bicker/argue like normal siblings, but it means DD is at risk of being kicked/punched if he gets annoyed. The rules are if he starts, DD must walk away from him immediately.

You have to remember, your DD can't regulate her emotions, she isn't in control of them, and you cannot punish a meltdown.

OP, i say this kindly as I do understand and you sound at the end of your tether. But authoritarian wont work, or stop her autism, nor will taking away her cub badges. It wont change. You need to get help and support.

No blame from me, OP. I don't know how you and other parents in similar situations do it. I'm amazed at the total selflessness of some parents. I've seen this situation end in the break-up of so many marriages. The damage it does to other children in the family is beyond calculation. You all deserve better.

@LilyPark

Snort. So after being told I'm cruel and abusive the require DD1 to stay in her room, you're now telling me to serve her meals there so she never leaves! 😂🤪

can she go to as residential school?

No...

You and your DH sound like a good team, work well and know when each other needs a break but living apart won't allow you to have that dog walking time alone to catch your breath if you live in separate homes.

You need each other and for the sake of your other DC should stay together she faces enough without her DM/DD living apart.

@Curlyhairedassasin - in what way precisely is it cruel and abusive to put NT first for a while and ensure the ASD member of the family is safe but not attacking the rest of the family?

Please explain why you think this is cruel and abusive. I see no evidence of that in what OP has said.

@stargirl1701

I understand where you are coming from. My DD 12 used to have epic meltdowns, I was thinking of getting her assessed. She’s actually responded very well to very clear boundaries, screens removed, typical super nanny type parenting. She also responds well to cuddles and chats. DS4 will most likely get an ASD diagnosis and this that style of parenting wouldn’t work with him at all. He’d be confused and incredibly upset. I’d trust your judgement. With DD I definitely needed to feel ‘in control’. She needed to know that too.

I am aware I am perhaps behind the times here and I know there is a strong opinion currently against ABA. But 14 years ago when my son was diagnosed ABA was what you did, if you could, and I do feel behavioural, reinforcement based approaches may have something to offer here, OP. But it will take careful planning and work, and meticulous observation and recording of what your DDs triggers are.
if you’d like to discuss then PM me by all means. There will be solutions here; just tough to see that when you’re at rock bottom.

Op, I would question if your daughter is in the correct setting with all that’s needing to be in place for her at school. It could just be that much less would be needed if she was in the correct placement that in return would have a knock on effect out of school.

The other day op you posted to a desperate mother the following advice

Could your DH take your eldest and camp with him? Totally basic camping in a farmer's field or wild camping. Chopping wood for a good portion of the day, lugging water from streams and filtering it. Walking miles every day to the next suitable site for wild camping. Life as it would've been 4000 years ago.

My DD1 is always much better when she spends holidays like this.

could this happen for you?!

Any one who thinks this mother has not tried everything has no idea what they are talking about

Will people stop saying the word abuse. Its absolutely ridiculous and makes you look stupid. Why are posters on mumsnet so frightened of boundaries? In every single aspect of life they cannot get their head around someone trying to put down boundaries, especially when children are involved. As it stands DD1 is not being abused but DD2 IS. If it wasn't so serious it would be laughter at how posters are totally disregarding the youngest. Her childhood sounds terrible (sorry op).

@Whatafustercluck there are other ways to increase sensory input to certain senses and decrease others that don’t involve screens. The only way to reliably know if screens are helping or hindering a child who is displaying huge amounts of aggressive and unhappy behaviour is to remove or severely restrict access to screens for a certain amount of time. It’s great for some people if screens calm them and enable them to function well the rest of the time. This is not the case for the OPs child who is still displaying severe behaviours despite access to a screen. It’s a logical step to try removing it to see if it improves things in the long term (likely to be some upset in the short term of course).

@WildUnchartedWaters

I'm not taking away her Cub badges. She wanted to achieve every single badge - all 44 of them. I made sure this happened to the point of organising scuba diving sessions and a surfing holiday. Driving 100s of miles for her Sports Enthusiast badge. No more of this.

I absolutely agree

That many props and crutches indicates a school that’s throwing money at the child rather than understanding the child

DH is autistic and I feel the same. He does nothing to try to understand his own behaviour, regulate it or accommodate us. I’m sick of trying to help him, sick of being invisible, sick of his tantrums.

I’ve told him I will only now communicate with him on a strictly needs only basis.

I’m now looking to get myself in a place to leave.

I really feel for you OP.

Also to add - summer holidays are ridiculously long, I really do dread them as my DS behaviour is unbearable and destructive. There really does need to be something in place for children with additional needs and their families in the long summer holidays.

@Kimchikitchen

I did it last week. Yes indeed things were better. She is better outside. Waaayyyyy better.

But, what about DD2? And, DH is not prepared to live like this.

If you have zero experience of autism, what on earth makes you think you can offer any advice?

What qualifications and experience do you have of working with autistic individuals? Well, obviously it's none at all, but I'd like to see you justify your disgusting abilism.