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.

She is trying to balance everyone's needs in a truly difficult situation with far too little outside support.
Venting is a healthier option than turning it inwards on herself or onto the dc.

Yeah the op needs to find the methods that work for her child. Structure and routine works for many nd people, but for many others it really doesn’t.

You have experience of your Autism and no one else’s. And as for anything else -I can’t be bothered with you.

Would you mind sharing how your experience played out when they were older ?

@Norwichknowall

Oooh, not heard of that. We've used Social Stories with photos and symbols alongside text but she REALLY dislikes them. She's a big fan of graphic novels. Do you have a link at all? Thanks.

Nothing to contribute apart from saying this: I really do hope it gets better for you. Parenting is hard so I can only imagine how hard it is for parents of kids with special needs. If what you need just now is putting the other 3 people in the family first then you should do that. 💕

Her DD2 sounds like she is being harmed and left afraid by the behaviour of DD1. That has to be a major consideration. It is not okay for other kids to be hurt and to live in fear of meltdowns. I grew up with a sibling with ASD and it destroyed the family. When I look back on childhood I struggle to find happy memories. I also feel sorry for some of the children harmed at school by this behaviour. Everything was overridden with the fear of being kicked repeatedly or a meltdown. Having concern for a sibling being injured and left fearful by a child with ASD does not make people ableist, evil vultures.

One poster said:
The OP has said she has known her daughter is autistic since she was 5 when she was diagnosed. Her daughter is now 11. Between then and now she could have gone and educated herself with the endless resources on autism and behavioural problems.

The OP has clearly demonstrated that she is very well read on the subject of autism. From her posts, I would say she is highly educated.

Well, as autistic adults they struggle to function, they are very self absorbed and short tempered, but I think that's just because of their condition, not necessarily how they were raised. But I could be wrong.

@MostlyBlueberryFlavoured

No one is shitting on my daughter. No one. They are helping me explore options. Allowing me a space to disclose my utter despair at our lives. I have 6 new avenues to pursue that didn't exist for us this morning. I have been challenged. I have been supported. This is MN at it's very best. I've been here over a decade. I knew the extremes of opinion I would receive by posting here. I'm a middle aged woman who does not fear the challenge.

You proved my point. We are not allowed to criticize or examine the trendy buzzwords/buzz phrases of the day. You want to shut up anyone who disagrees with you. Since the powers that be are the ones who push the craziness of course they use that power to shut up any dissent.

PDA is not a buzzword. It’s the lived reality of many of us.
I’m more than happy to discuss the shit out of it, but if you are going to speak like that about a disability expect to be pulled up for it, it’s not ok.

PDA is a relatively well known presentation of autism, and is accepted to be very difficult to manage - both for the person with it, and for others around. It isn’t deliberate poor behaviour that can be disciplined away. You’re not being silenced, you’re being pulled up for incredibly ablist language towards a disabled poster who has disclosed her disability and spoken eloquently about how it affects her. I’m amazed you think this is ok.

No, people should be careful what they post about their non-consenting children. Asking for support is NOT the same as inviting people to spew hate.

Just a bit distracted by the tennis right now!

The people who tell you to smack your daughter aren't shitting on her?

You clearly haven't read the OP's posts.

You are wrong.

Like you were just careful about what you posted about your non consenting child?

Exactly.

and anyway what worked at 5 won’t necessarily work at 11. Life would be much simpler if it did.

hardly surprisingly the challenges change as the child gets older.

@MostlyBlueberryFlavoured

No. I've made my opinion on that crystal clear. I am big supporter of Scot Gov moves to ratify the Rights of the Child. Someone expressing an opinion is just that. An opinion. They are entitled to it. My PILs and my Dad would agree with it too - and have encouraged DH and I to use it as a tool. But, we won't. I'm not having violence in my home.

I haven't read the entire thread. Just wanted to let you know @stargirl1701 that you aren't alone.

Your daughter sounds exactly the same as my daughter. My daughter masks like a pro at school and we only managed to get a diagnosis last April.

My son struggles terribly. Luckily I am no longer with the children's father so they can get time away from one another at weekends and school holidays.

We are struggling to get any support for either children, so definitely feel your pain.

Hope your new routine works for you all. 🙂

My heart breaks reading these threads. It never ends well.

I’m hoping the OP has posted all this in anger and because she is at the end of her tether. I’ve been there as the parent of two autistic kids, I understand. But I say I hope you posted in anger because while social media is a blessing for letting it all out, there are multiple red flags if this is spreading into real life as you suggest.

As well as being a mother of autistic kids, I was also that autistic child and I can say with confidence puberty is fucking horrific for autistic girls (and boys). I don’t have the energy to write about it all just now because that period in my life is a trauma I can’t really face and it’s effects have followed me into middle age and probably beyond.

My allegiances will always lie with the autistic people because it’s so bloody hard trying to work out what rule we’re meant to be adhering to today or this minute compared to the next. Like you we cannot win. Sometimes we ignore you/your rules etc not because we’re rude but because trying to understand them is more than our brains can process at that time. It’s a survival instinct.

My mother would beat me because I was the difficult autistic child going through puberty with the smart mouth and the lazy attitude etc . My life was hell. She espoused happiness for the majority not the minority and she still Iives like that now, even although I’ve grown out of those behaviours and become a wonderful mum myself. Her discipline didn’t help me or her and our relationship in adulthood is very fragile.

OP it wasn’t easy for her either because she could not understand me any more than I could understand her, so please don’t think I’m belittling your experiences.

That said I think you need help. You need support and I recommend speaking with social services and pushing for it. Not to help your daughter you’ll get less offered for her but as a carer and someone with her own mental ill health you can reach out for help for you.

like others I want to reiterate your listed consequences will not work. It will cause more problems in the home and the other family members will come to blame you as much as they do your daughter as you both draw battle lines. Again I’m talking from experience here. I’m sure you’re aware of how stubborn we autistics can be and your daughter I’m sure will have a willpower unmatched by anyone in your household. Is it really a life of more battles you want, with someone who is more determined to win than you can ever be, or do you just want an easy life?

For the easy life, don’t force your child to conform or do anything they don’t want to. In a couple of years she may be ready and able to understand how to negotiate neurotypical life but that requires from you a level of tolerance and empathy now that you’re suggesting you will no longer show. She won’t always be like this but the more you kick back, the longer this will drag out.

i wish you luck op. You’re in an unenviable position but it’s one you can realistically no more
control than she can.

I posted FACTS. Not hatred or judgment or an invitation for idiots to spew bile all over him.

I have nothing useful to add other than sending you strength. Quite frankly there’s not enough in the world!

I have two with ASD. My eldest sounds a lot like your DD1. My youngest is 5, non verbal, not toilet trained, has zero communication skills and maintains the mental age of a 12 month old. Yet she’s the EASIEST of the two! She has meltdowns and I may have had to replace the tv three times and her tablet twice this year because she’s accidentally broken them but at least she doesn’t scream at me and attack me like the oldest.

I get what you mean about the being done. I’ve been there. My eldest got too used to being bought a toy every time we went out. At first it was a 99p car every time and frankly it was worth it to prevent the meltdowns. Then he started demanding more and more. It got to the point where he was screaming and attacking me because I wouldn’t buy him a virtual reality headset for no reason whatsoever. He eats everything in the house the day the food shop arrives and doesn’t care that leaves nothing for anybody else. Then there’s a meltdown because I can’t always go out and replace it all the next day. Walks around in just his pants because he can’t tolerate clothes. The house tiptoe around him and any conversation he starts leads into him demanding something. At the minute it’s Roblox vouchers.

I ended up losing it and ranting at my mum about how I couldn’t stand it anymore. She basically told me I was the worst mum in the world and that I needed help. Haha! Good luck finding the help! Disability social worker is beyond useless and he masks at school so they don’t see it.

No answers. Just solidarity.

They’re by the same person as social stories - Carol grey. The basic premise is you talk about social situations after they’ve happened by drawing a comic strip of them together. You then add speech bubbles for what the people are saying and separate thought bubbles for what they are thinking. You add colours to both to represent different emotions. It’s a bit more interactive than social stories and provides a good frame work for talking about how words and feelings might not match up and how actions effect what others are thinking. Might be more something for school than home but possibly worth a shot.

it was bought up by my Therapist i was seeing for some serious anxiety issues during covid.. she is who also put me forward for my ADHD assessment, i'd just assumed it was a trauma response mixed with just being a stubborn mare as my ex was a controlling bully (attempted to be anyway) and i fought him all the way, but they tracked it back.. then my ADHD team confirmed i definitely have some PDA when they went right back into my school reports and things.