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.

I don’t agree that screens are necessary for “self regulation”. I think people now use that term as a synonym for “being quiet and not kicking off” which of course they will be effective for in the short term because screens are absorbing and distracting. That does not mean that they actually help people (NT or ASD) to self regulate. Screens - particularly games - can desensitise your dopamine system and just lead you to seek out more and more “reward” either in the form of more screens or other dopamine-fixes like sugar.

To the contrary I think screens provide a temporary distraction and actually prevent people from being able to engage with a work through a solution to the problem. I think it also deters people from developing more healthy coping mechanisms as screens are an easy fix. There is no evidence that “children with ASD need screens for self regulation” and there is potential for behaviour to improve if screen time is strictly limited as it creates space for developing better coping mechanisms.

“Don’t attack your sister” is quite a woolly demand, and if dd is overwhelmed it’ll go out of the window.

Is it possible to break it down? What’s going on when she attacks? What’s going on before? It’s likely to be building up before it happens.

Can both DD’s have a screen each, so she doesn’t have to share at all? That is one way to keep them a little more separated.

Does your dh work? How long do you have DDs together on your own?

Eh? She's not talking about all autistic people. She's talking, exclusively, about her daughter.

It's not even remotely about you.

www.discover-autism-help.com/autism-and-screen-time.html

I often think the same after a rough morning with mine.

But it passes op

it will happen again! But it will also pass again

You're not living inside her ND head. What seems 'reasonable' to you may not be to her.

As has been said, she didn't ask to be born. You had her. You can do what you're doing right now, but it won't make an ounce of difference.

You're exhausted and drained with it all, I get it, but your 'I'm done' attitude will only make everything so much harder and you'll lose whatever relationship you have with your child in the process.

We are looking at King's Interhigh or Minerva School for secondary. That's still 2 years away.

She's in the local mainstream school. It's rural with around 60 children. Children in Scotland usually go to their local catchment school.

She has a therapy dog at school, LEGO therapy, RDA session during the school day, two desks in the class (one in a group and one in a corner with a sensory basket), a desk in a quiet room when the classroom is too much, a weekly Outreach Worker session, a weekly Well-being Social Worker session, ear defenders, a mini Yoto and noise cancelling headphones, an iPad with said headphones...again the list could go on.

Give over. She's not suggesting neglecting or abandoning her. She's talking about putting the rest of the family first for a change, having done the opposite for years and years. She's aiming for three people's sanity and happiness being saved instead of dancing to the tune of one person whose sanity and happiness can't be saved.

If you are not a parent in her position don't judge her. If you are in her position and know better, give her some really supportive and informed advice.

Not meeting an autistic child’s needs will make things far worse for their siblings.
It’s shit, and an almost impossible job juggling it all.

Your daughter needs the peace of the just you and her at home. Your other girl coming home changes things. She can’t cope with it. It’s an impossible situation but can you work out a routine that would enable a better homecoming when your girl comes home. Perhaps your daughter being in her room for a rest/unwind for a while then joining the family after a wee while. You could even do a pictorial timetable of it for her to follow.

Sounds lovely

@Amuseaboosh

So which of those demands would you take away?

Could you do a self referall? I'm not sure where you're based, but something like Trent PTS? And if not for her, then for yourself?

You're human, and you're struggling. You need support, too. Does your DH take the dog for a walk every time your DD1 has an issue?

You're correct that "there is no evidence that children with ASD need screens for self-regulation". Those with lived experience, however, and OTs, will tell you that by increasing one sensory input you can reduce demands on the other senses which does indeed help to refocus some children in a way that drawing or colouring (particularly if there is ADHD comorbidity).

Well the hope (by no means guaranteed of course) is that if the older sister is better regulated she will act out on her little sister less. I am not quite sure of the set up of the family home but it sounds like if the older sister was kept in their room with a screen (if that doesn't make things worse in her case), and had all her meals there, then she won't be in physical proximity of the younger. I was the terrified sister of a autistic older sibling who was extremely violent towards me, so I do have sympathy!

This 100%

Nobody, and i mean nobody knows what OP is going through, most people can only but imagine, some will be going through something very similar and just as horrific but OP is living this life daily, 24/7 every second.

OP has outlined all the help she has asked for, she has outlined all the avenues shes pursued, she has outlined all the steps she has put in place, she has outlined all the things she has tried.

When will posters accept this?

OP is quite frankly shattered, her family is falling apart, her other child is suffering, OPs mental health seems to be at a low.

Stop throwing random solutions at her, she has said she has done everything so just believe that she has.

That is not treating her child as a second class citizen.
That is tactical - and will most likely give you some peace to eat.

My DD eats alone. Too much stimuli with others around.
She is not allowed to scream, bite or bang her head. That is a strict and loud NO and I send her to her room. Her room is safe. If she is very upset I will go to her when I have calmed down to help her calm down.

It is vital you look after yourself OP.

In addition, I have told my DD there are certain things she simply is not allowed to do, autism or no autism. I don’t know precisely what she understands because she is non verbal.
But firm boundaries are vital for all. Firm boundaries are essential for kids, and appropriate firm boundaries for autistic children are also very important. It helps them regulate themselves and gives stability and calm.

Having said that, my DD has her own iPad that she has almost free use of with some set exceptions through the day (and no iPad at bedtime).

I think you are very unreasonable. She is a child with a disability and your plan going forward is essentially a big punishment for her having ASD (and maybe PDA). I have two children with additional needs, one has severe ASD and learning difficulties. I have been through a lot. Trust me!

The moment you decide to have a child, you accept that there is a risk of disability and then you deal with it. You cannot just treat her like that. Your poor DD. I always tell myself that when things are hard for me, I need to remind myself that things are probably a lot harder for my child.

I really hope you get some more support as you clearly need it but your 'i am done' plan is downright cruel and abusive.

I'm so sorry OP, that sounds so rough.
I don't have any practical advice, and honestly I don't think you are in a place where you even need/want any advice right now, but as another parent of ND children, I just wanted to say I get it. Sending you big unmumsnetty hugs.

I wish you every hope and chance of this working, despite what other people may think, I’m sure your family have tried everything available to help meet your daughter’s needs, at the detriment of everyone else’s in the family.
unless we’ve lived your life, we can’t comment about the rights and wrongs of what you’re proposing to do.
There is no “one fit solution “ to this situation, all children are different and react differently to each situation, regardless of their own issues.
I wish I could offer something that would help alleviate this pain you’re experiencing, but I can’t.
please take care of yourself, other people do care about this awful dilemma.

@Amuseaboosh

No, we tag team. 30 minutes each being kicked, hit and bitten then swap. The other takes DD2 and the dog out.

The year I had a breakdown, the meltdowns lasted 6-8 hours. I guess I should be grateful 2 hours is the norm now. But. I am NOT.

My kids do not have autism

Then why are you talking?

I understand it can be hard to cope with a disabled child, but deciding to psychologically torment her going forward is not the answer. She isn't choosing to be this way. She doesn't enjoy being this way. Punishing her for being this way is not right. What you are planning to do is abuse. If that is the only option you have left then it would be better for her to go into care.

I would add that the when my parents did become very authoritarian with my autistic sibling she would become enraged and leave the house and go missing, so it was stressful either way.