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.

At least her mother cares about what happens to her.

Jesus Christ this makes me feel a bit sick. And I say this as a parent to a child with severe ASC. She’s not being autistic on purpose!

You poor woman.

I hope you are able to bring in some outside help, protect your younger daughter and give yourself a breather. You must be at the end of your tether.

Yes, well I feel like crying for the OP, too. Why isn't she worth crying for?

@Brendabigbaps

I read this one earlier this year.

If dd1 is in her room now could you take a snack up to her rather than bring her downstairs?

That way you get more peace and time with dd2.

When ds was that age we made his room a really lovely place for him to be (with his input), and made sure he wasn’t disturbed apart from for tea time etc (and then he’d have alarms set to remind him, and a laminated list of what was to do throughout the day).

@myyve

Yes, I am a primary school teacher. On holiday until school returns in Aug.

I have 24 hours away from the house later in July. But, I feel so guilty leaving DH to try and cope on his own.

You sound utterly at rock bottom, I really feel for you. Some family friends reached a similar point with their teenager some years ago and put him into foster care for a while to allow everyone some space to recover a bit. Their son did move back in with them eventually and they managed to keep going.

This was some years ago, so not sure whether it would even be possible now, but perhaps something to consider?

The older one. I have 3 autistic children and agree that a strategy with them helps. My youngest was an absolute nightmare, punishment came in the form of time out, a tent in his bedroom where he could decompress. He was lucky enough to get into a specialist school who we liased closely with, it took 2 years for him to speak to anyone but his one to one. Melt downs have lessened over the years to the point he will just growl and take himself away into a safe place. I can't for the life of me think how taking his screens away and basically not learning about his needs over the years would have helped. What op is suggesting is abuse!

My ASD DD is now 17, and we went through such horrible times at that age. She was undiagnosed as well, didn’t start on the pathway to assesment until she was 14, and we finally got our diagnosis last week (“high functioning” .. a compete misnomer)

So, at that age, I thought I was dealing with a violent, rude & badly behaved teenager. I was a punchbag, her too was smashed up etc. It was through the process of diagnosis that I realised she wasn’t violent and rude by choice, she was a young person who was struggling to manage their emotions, having panic attacks / meltdowns.

Your child does not want to feel the way the do during a meltdown, it’s awful for them. This is not a choice - no punishment in the world will work, when they are like that. All you will do is make the whole situation more distressing for them, and for you.

Why remove their screen, if that’s what soothes them in this situation? Why punish them for an ASD meltdown? “Authoritarian parenting” will not work, it will only heighten the conflict.

What you could do is to try to talk to them, when they have calmed down. Find out what would help them when they are feeling out of control. Do they want to be left alone ? What is it they need. Don’t have this chat in a formal way, go into thier space, do something they enjoy, and bring it up in the conversation.

Parenting an ASD child is hard work, it’s important they know that you are on their side. Getting angry at them solved nothing, and makes it all wise.

The best thing I did was to access some support via a local charity, and did some “mindfulness parenting” - I remember them saying “if you always do what you have done in the past, why would you ever expect it to be different”.. this was so true, so I changed how I patenting. Less demands, more collaboration; less orders, more choice.

Hi OP, I have a ds 13 with severe autism. I know it's hard. I haven't read all posts but did read all yours.

You're all being let down by the professionals involved with your daughter. You're clearly at breaking point and need more support. Do you get any respite at all? You should and you need it. The disability/ family social worker should be putting this into place. Do they know how bad things are?

Have you considered a residential school for her? It may give you all the space you need but obviously isn't going to happen any time soon but could be worth thinking about long term.

You clearly need a break. Phone ss back and tell them how bad things are. They should have a duty social worker on to take your call.

Do you have someone in real life that you can get to support you when they visit and put your point across. You could write it all down before they come so you can get the wording right.

Have you had a carers assessment? Do you have a child disability social worker? Taking her screens away is a bad idea as she probably uses them to self regulate. Does she have opportunities to self regulate at home?

Trampolines
Sensory swings
rocking chairs
A quiet sensory place for her to calm down and self regulate.

Is she masking in school and exploding at home?

She could be going through puberty too which isn’t helping her behaviour.

We just did her room last year. She designed it and we made it happen. We always knock before entering. It's her space.

She wanted a grey theme with the moon as a big feature. Harry Potter elements all around. Her own sheepskin rug.

Have you asked them about the possibility respite Care or a residential placement ? How would you feel about that ?

My initial thoughts are how at the end of your tether you sound. The second was I wondered if a residential placement would be better fFor dd. I know places are scarce and they cost a fortune and you need a god social worker to support you but I do know of young people that have got a place due to the violence against siblings and the repeated damage down to the home.Make sure you document everything so the SW has a clear understanding how frequent and intense things are when dd goes into crisis.
if she went to resign care she would get her sputum support and it could help rebuild you relationship.
sadly there is no magic wand to make things happen overnight but keep on reporting all incidents.
Good luck Op.

Is she in a main stream school? I'm sorry I do understand, I was rock bottom with no support in the early days, knew nothing about how autism worked, learnt as we went, had to scrap the idea my son was being naughty

I agree with this, seems a sensible approach all around.

for Ds his bedroom is his sanctuary, his place he can hide from the stresses of the world and that’s what he needs.

I think as much as it goes against instincts a low demand approach is often what makes difference as it removes the battle grounds

Strict and authoritative doesn't work with PDA OP. They need a low demand, low arousal way of parenting and schooling and yes it's hard on the rest of the household, this insatiable need to feel in control.

I'd look into it more before going down the path you're thinking.

Hi Op,
My heart goes out to you, you are quite right to try different tactics.
My brother was autistic not diagnosed as this was 30 yrs ago.
My mother was very strict with him and I have to say it worked well. We were a family of 5 and my mother was a very sensible woman.
Yes go with your instinct and impose more rules
Good luck.

i do empathise as my eldest is difficult (and now lives with his dad) but please will you stop acting as if all autistic people are demanding and violent? I was like a little mouse as a child and my youngest DS is the same. Lots of autistic people are quiet and shy.

Just do what you have to do to make life bearable. It’s probably good to be strict but I wouldn’t take away screens because then you won’t get a break. I don’t think that parents should be left to deal with all this on their own…obviously in the past these kids were out into residential care. That may have been wrong but the current system is wrong because whole families are being destroyed.

Dont listen to those saying you’re planning to be abusive. It isn’t abusive to think about your whole family.

Also to add - I understand how hard this situation can be - it can break a family. My DS is severely autistic and we have been close to breaking as a family. It’s very difficult. Support is severely lacking for families in crisis.

That sounds lovely!
Does she happily spend time in there?
Can she have some sort of screen for herself up there?

What does 'done' look like op?

You say you won't lock her in the room, but how else do you stop her sharing family space? That sounds stressful itself. When my dd is in a rage about something she won't be told to go to her room. When I walk away from her she follows me throwing verbal or physical abuse. She doesn't have a lock on her door but we have locks on ours, for precisely this reason. I get it, I really do. But being 'done' in the way I understand 'done' doesn't really sound viable. Being authoritarian will escalate things further.

You sound completely at the end of your tether, and I really can relate. But being 'done' still requires a strategy. So what does the strategy look like? Witholding things, severe punishment and complete rigidity will break your family, because however you feel right now she's your daughter and you love her.

@ExtraOnions

We have tried all of that. Greene's Plan B, visual timetables, code words, safe spaces, breathing exercises... I could go on for pages and pages.