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.

Sorry NRTFT

I completely understand what your going through and I always feel sorry for the siblings in this situation.

I work with autistic teens and 90% of their bad behaviour is because they are spoilt.
They are given into when they’re younger (because it’s easier as the parents need to sort other DCs out and do their everyday tasks) and then they carry on this behaviour as they get older because they know if they lash out they get want they want.
Then they get bigger and stronger than them and it’s very difficult to get any control.

It is very important for all children to have clear boundaries, rules and consequences. It is even more important for children with autism to have clear ones.

There is a way to give boundaries and rules without punishing them though.

I am sure you’ve tried absolutely everything but instead of taking things away before the behaviour has happened, you need to wait and explain what will happen if they carry on. Then say if I have to ask you again it gets taken away, or I will give you 1 minute and if you haven’t calmed down then you get it taken away for the rest of the day.

Being clear I’d do important and if you take something away then they need to get it back the next day as that’s their reward.

It is always better to use a carrot than a stick.
If it’s too much punishment then you’ll soon run out of consequences and then you’re screwed.

Remember that she’s also at the age where her hormones are all over the place and she’s starting a new school or friends from her school are moving to secondary school.
There are a lot of changes and even NT kids turn into horrors whilst they’re going through puberty.

The parents and wider family matter as well. It's not ableist to express frustration at difficulties experienced.

The child clearly isn’t locked away in cupboard. It sounds like room is her safe space. She’s interacted with people in the morning at a sports activity she likes, had lunch of her choice made by mum and a nice afternoon with her toys/paints/books.

@StopStartStop

I can separate my child from her autism. I love her. I can see the positives autism brings to her life. She would be a happier child with autism though. She will be an amazing autistic adult. It's getting to that point that we are all struggling with...including her.

What was interesting is when police spoke to my NDN’s son and when my stepdad said he’d go round and speak to him (he only had to do it once) the aggressive behaviour got less or easier to deal with.

This was after he pushed his DM downstairs, luckily only onto the first landing and she wasn’t really hurt apart from bruises. My stepdad after speaking to him when he heard him through the window/door (a corner house) just shouted through the letter box “I hope you’re ok mum” and she just shouted back “yes I’m fine” and apparently her son calmed down then.

I think you can and should put in boundaries or say no because how can you live otherwise. He couldn’t read or write properly (think this is still the case) but wanted to work and believed he could do so at the local train station - he couldn’t due to lack of reading and writing skills. His DM said he could start out reading and writing but got bored and then refused to practice it and his school didn’t follow through with the practIce.

Out of interest, what about the mental health if her other child? How likely is she to become depressed and suicidal if she is constantly being punched, hit, bitten etc?

Stargirl

Yes, it's hard for an autistic 6 year old to have the kind of introspection needed for the empathy step of plan B. You may well know but in case others reading this don't, there is free guidance for the empathy step "probe" prompts (essentially, who what where when does the person have the given difficulty - eg a difficulty ending a gaming session) on livesinthebalance website, plus free ALSUP documents helping you think about lagging skills.

It's not rocket science but there is a definite knack to a problem solving conversation. Must be framed as "I have noticed this difficulty..."

One has to remain emotion free and externalise the issue. Never "why do you hit your sister", which will induce self justification (in anyone but especially in an autistic person) and close down any opportunity to actually problem solve. It's always "I have noticed you have difficulty getting along with your sister when you are playing on screen with her. What's up?", Then
"My concern is that...."

"Is there anything you could suggest that you think might help solve this?"
"Ok I can see how that would work from your point of view. The thing is from my point of view, that won't work for me because ..."

Both of you have veto power. Both must agree a solution that is acceptable to you both. Both must agree to check back in and review.

The marvellous thing about plan B is that, done right, it teaches introspection, compromise, negotiation, that a person is valued and listened to. It's very, very powerful.

Good luck.

They matter, but clearly this particular child matters to no one because they're DONE with her.

@MostlyBlueberryFlavoured

It may be disgusting but it is true. My lived truth and experience. My husband's lived truth and experience. My youngest daughter's lived truth and experience.

You may not find it comfortable. I assure you, neither do we.

@Msplace

Please direct me to support or strategies I have yet to use.

... your disabled child's lived experience?

Another avenue may be pursuing a CSP which does have legal backing. Another massive protracted battle against the LA.

A CSP may be a useful route to go down, but I’ve found it nearly impossible at primary school stage, in the end I really tightened up my DDs Child’s Plan, which was a battle but on the understanding that if they didn’t meet the provisions on the Child’s Plan I’d be seeking a CSP. It’s difficult because there needs to be evidence that lesser measures haven’t worked and that’s a long fruitless path.

One thing that did help was OT support for executive functioning - my DD is still scatty but can cope with a fixed routine which lessens her frustration and stops meltdowns building up in the same way.

The other thing, which may seem a bit left field, is having her hearing tested. It’s quite common for kids with additional support needs to have hearing difficulties which don’t get picked up because they mask so well. My DD had mild heating loss in one ear and moderate hearing loss in the other, which definitely contributed to her being tired and frustrated generally. Having that treated has made a huge difference to her confidence and her communication skills.

It’s a hard read I agree

But I can’t see a way to help the op without at least hearing her view point

I hope the op can find room for her child if there’s support

@AutismProf

It's really a more 'advanced' form of restorative conversations which is used extensively in schools.

I will re-read tonight and talk to DH about taking it forward again.

5 avenues to try from one thread. If you believe this isn't helpful to any of us, you are very wrong.

Thank you. Xx

@MostlyBlueberryFlavoured

I suspect it is her lived experience most all. She doesn't want to live with daily meltdowns either.

The marvellous thing about plan B is that, done right, it teaches introspection, compromise, negotiation, that a person is valued and listened to. It's very, very powerful.

Absolutely yes!
At 9-11 I thought the only future for ds was jail, but Ross Greene’s books and website changed our lives. It’s not easy, but ds has a very bright future ahead of him now, that we couldn’t have imagined 7 years ago.

It’s very difficult to drop normal parenting, but it’s worth it.

The problem is that OP has another child who is being harmed. A disabled child is not more important than a non-disabled child - both have exactly the same 'value' as human beings. It's not ableism to recognise that another child's life is being made worse as a result of the current situation. There aren't any neat solutions; whatever OP chooses will have an impact on one of her children. It's an impossible situation. What do you do when you have a duty to both children, but the 'best' for one is bad for the other?

@Jellycatspyjamas

I've not had her hearing tested since the early screening test. Thank you. Xx

And the family don't matter ?
My son is severely autistic with severe learning disabilities, he has very different needs to.the Op,s daughter but I can totally empathise the frustration and lack.of support and the fact your whole life revolves a round your disabled child
I'm sure the Op, loves her daughter very much but its hard sometimes very hard try showing a bit of empathy.

I work with autistic teens and 90% of their bad behaviour is because they are spoilt.

Perhaps not 90%, but certainly some is. It depends on how far along the ASC spectrum they are and exactly what, beyond that increasingly meaningless label, their precise difficulties are.

“Do they have control over their actions?” Someone asked upthread. Many, even perhaps most, can be TAUGHT to have control over their actions and they are not the only people around. While conflicts are inevitable and there is not always an easy way to resolve conflicting needs (leading, at the extreme end, to war) it is soo nice to see someone else acknowledge this! Perhaps the old link to males could be relevant, with male entitlement to.

This.

Nope, I have no empathy for her after she said she'd no longer have empathy for her child. I only hope her child is safe.

Her needs aren't being met and she is acting out.

Her "need" to be violent to others around her in order regulate/release emotions does not trump others rights to not be hurt. OP is placing very few demands on her, is arranging education to meet her needs, goes above and beyond to facilitate her demands.
Autism is not a pass for selfishness & violence that damages others to be tolerated indefinitely, even if her DD cannot understand why. If her needs cannot reasonably met without extreme damage to others OP does not have to meet every need.

@nosykids Do you find yourself putting off doctors appointments or refusing to take medical advice? This is something I do. I got something stuck in my ear and for nine months or so, I put up with it being blocked and half deaf, before finally being in so much pain I had to get it treated at A&E . Also was told by a nurse at GP's surgery I'm prediabetic, he was talking down to me a bit about putting sugar in my tea and I slammed the phone down on him and have refused to even discuss or think about it since. The surgery think I'm a nightmare. Im a 46 year old woman with two grown sons for context.
Sorry to derail the thread 🙂