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.

Absolutely true.

''Love is not enough''.

People who think hugs and sweet soothing words will work are deluding themselves with children who are violent with Autism.

It's terrifying when they kick off.

Its not a realistic option
Where do.people think.all.these lovely residential schools are?

Wow OP, I'm blown away by all you have put in place for dd and all the things you do around her - plus everything put in place at school, I'm sure you were involved there too to some extent as most kids don't get anything like that put in place for them! I think she is extremely lucky and I'm not surprised you are feeling burnt out by it all.

I actually think the things you say as 'punishments' because you can't cope any more might actually work really well. Many kids with ASD would rather be in their room on their own than anywhere else (I know mine would!). Her eating separately also I see no problem with. What I would say is though that rather than see these as punishments because you are done - reframe them as positive things to help her, her sister and you all. Let her decompress in her room, let her eat alone - these are not necessarily 'punishments' for kids with ASD.

I would say when it comes to actual punishments though and screen time, that no screen ever again is the threat of an out of control parent - you know that though. I would only take away a screen for a short sharp burst - none for an hour for example. Also don't shoot yourself in the foot with punishments - if taking it away always leads to meltdowns then it's not worth it for any of you. I would also say that her sharing a screen with her dd is asking for disaster right now, it would be much better IMO for both of them if she had her own or for them each to have separate set times.

The other thing I did around this age with ds when I had had enough was increase the things he needed to do for himself. Make his own lunch, change his bed etc The responsibility seemed to work for him, don't know if it would work for dd. Unfortunately I did kind of make it a punishment as I'd had enough - but ideally I'd have reframed it as something that was important for him as he was getting older and more capable.

I also don't think it's unreasonable to stop going to such tremendous lengths for dd. It's not helping you or her if you are completely burning yourself out by doing that. Give yourself a bit of a break! You sound like an amazing mum doing a fantastic job.

Unfortunately in my experience (autistic ds and other family members) autistic people are inherently selfish and can physically only think about themselves. It's like they completely forget there is a world outside their own head and that others around them don't think exactly as they do. It's often not possible for them to consider others first, regardless of how many times you remind them to try (like constantly!!). Mix that in with being a selfish teenager and it really really isn't fun.

I feel your pain OP. I've no advice unfortunately. I'm hope you can all come to a solution together. As another poster mentioned, my DS uses screens to regulate himself so taking them away actually makes it worse. He's obsessed with football, including football stickers, so we have a star chart where after a certain number of stars he gets football stickers. If he's unkind etc then we strike stars off. Doesn't really work tbh in general, but occasionally does.

I sympathise with you how bloody hard it is, my dd7 is autistic and has adhd, but you do realise it isn't her fault? Do the school have a family support worker that could help you and have you worked out her triggers and what makes her a bit calmer? It could be something real simple that is triggering her. You can also ask social services for some support and do you claim DLA?

@Rycbar

It may but it's the last resort as a parenting strategy. Not my first choice, not my tenth choice, not my twenty-fifth choice..

I know I keep repeating it, but no violence as an absolute expectation is not something she can attain without someone else managing this for her first - I was in exactly your position 10ish years ago.

It’s not a demand that she can comply with.

Obviously violence is not acceptable, but placing this as her responsibility will probably make the violence worse.

Learn to recognise signs before violence happens, then put into place strategies (sensory, a different activity, a different room) to ward off the violence. Teach dd2 to recognise the signs before violence, so she can remove herself from the situation.

If she could control the violence she would be doing already. She needs help before the violence happens.

I’d happily give you more strategies that helped with ds, but at this point I feel like you’re not in a place where you can hear it (which I fully understand!), and it’s just coming across as me being patronising. Which I’m honestly not meaning to. I completely understand how you feel, I’ve been there. I can’t hear children laughing in a certain way in public without feeling like I’m going to pass out, because for a long time laughing was always a precursor to a violent meltdown.

I get you. Everyone is expected to pander to the few & it’s exhausting. Children in my family have suffered hugely due to one sibling. It’s very unfair.

You’re obviously not aware of very much at all.

Is she getting enough down time to allow herself to regulate herself? Being busy all the time with activities is great for many but for many others it will inadvertently contribute to the issues.

ds needs a lot of complete relax time to allow himself to self regulate especially if he has had a busy time. If we do a day out somewhere I know he will need the day day or ideally two no pressure. We do very little at weekends or evenings to give him time to settle.

it drives me mad because I am a need to be on the go person but it works for him and allows him a better quality of life.

No advice OP, but no judgement here. As a parent of NT kids I can't begin to understand. I babysat overnight for my friend's autistic son once and it was utterly overwhelming. I remember thinking, my god I've struggled for one night and she has this every bloody day. I hope things get better for all of you.

Damned if you do, damned if you don't! WTF.

@nosykids Ah I see, I'm waiting for my autism assessment so I will mention this.

Screens do not help them regulate. Absolutely not. They form brains differently and are highly addictive. They are an easy fix - give them an iPad silence try to take it away and it’s shit they punch kick scream and go into withdrawal mode. Screens are 100% not the answer the reverse

@LilyPark

I'm not taking activities away from her. That would be entirely unreasonable. She lives for her special interests.

She was at Fencing camp this morning and will be again tomorrow. She'll be on a kayaking river trip on Friday.

I'm not removing anything except screens for 24 hours which is the 'punishment' for kicking her sister.

Has she seen an occupational therapist for a sensory integration assessment? If not you can pay, they are a few hundred pounds but worth every penny.

The OT can develop a scale with your daughter and with you.

If “5” is meltdown/violence and 1 is calm, then you need to be catching her at a 3 and using sensory regulation strategies with her, even if 3 isn’t obviously distressed there will be signs you can start you recognise.

you keep saying she should be using her strategies. But by the time she is hitting people it is far too late. She isn’t seeing it coming and isn’t able to use strategies at 4/5 as her brain is going offline.

Your DD didn’t hit her sister out of nowhere, however much it might have looked like that to you

There was a build up. What had she done that morning, or the day before? Was anything planned for later that day? Even enjoyable activities can deplete and lead to a build up of overwhelm

How long before she hit her did she show what you felt were signs of stress? What were they?

That is where you come in, and keep helping her to recognise and regulate and name her feelings. She can’t “use strategies” on her own, she is only 11 and she is autistic. It might take years before your hard work and support pays off with this but eventually she will move closer to recognise her own emotions.

If my DD shouts at me “I’m like a 4 right now!!” then I know we are probably too late to avoid meltdown but at least I can get her to her bedroom and get a cold drink and ice pack and weighted blanket ready for the “cool down” phase, or maybe go for a drive in the car (going for a drive does sometimes bring it back down if I can get her to get in )

But, “I’m at a 3” is massively helpful, as I can remind her of strategies/get her to the park to regulate using play equipment/cancel some plans/ make herbal tea/offer a bath where she can watch Netflix at the same time/take her for a swim in the sea/warn her siblings that she is close to overwhelm and to leave her alone for a bit… or she comes up with her own ideas.

It has taken years to make progress but it’s worth it. Your daughters support strategies will be different from mine but the key is that she needs you to help.

The activities Op has arranged will give her time away from dd1 and let her spend time 1-1 with dd2. They doing like things dd1 enjoys and physical activity/outdoors helps her by what Op says. It doesn’t sound a lot for a 5 or 6 week holiday.

So how should OP defend herself against violence?
Wear bite and scratch proof clothing? Carry a small riot~ shield to fend off the blows and thrown things?

I'm sure OP will know full well the precursors to a violent meltdown-
No one should be physically threatened in their own home.
I pity the sibling , too.

It's hard being the sibling of a violent brother or sister.

Just the tip of the iceberg
Quote Children with autism frequently have sensory and motor integration issues, as well as tics; screen time has been linked to sensory-motor delays and worsening of sensory processing and can precipitate or worsen vocal and motor tics due to dopamine release.

I really feel for you and hope things improve.

I remember thinking if we just learn all the right strategies and meet all my childs needs and get the right support it will all be ok.

Some things have helped a lot but i realise now that not all needs can be met and strategies dont get applied just by the learning.

Good luck OP xx focus on DD2 for a while, she deserves it.

It's frustrating ppl are commenting on it not being DD fault she has autism, OP clearly is well educated on autism and strategies etc. No one is having a go at the child for her disability. It's the violent behaviour and the constant threat of it that's the issue. The violence has to stop by whatever means the OP has to resort to.

Removing screens as a punishment might well unleash a new level of hell.

How long is she on screens?

OP if there's a chance you have PTSD and it certainly seems possible then if you are able to access it EMDR therapy is very good for treating this, although I don't know how it would work whilst your still in the trenches so to speak. Good luck with deciding to hold a firm line, I hope this works for you, every child is different and it may help her feeling more secure.
I forced a snap decision on my son the other day and realised after what I'd done, he got distressed but fortunately not to melt down levels. So I agree that trimming back the options when it comes to decisions may help too. Hard when you try to offer more as they are older and want more autonomy, you forget they might not cope especially when you're stuck in the demand loop too.

@Sirzy

That's the tricky balance.

The surf camp was excellent as they offered mental health support alongside. I would really recommend them. We were camping all week which she loves.

I try to schedule everything in the morning to avoid anticipation anxiety. Afternoons for chilling out. I just am now requiring that to be in her room rather than downstairs.