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 really don’t think you are helping @Folioh

although I guess you are getting a warm glow of self righteousness. Nothing like kicking someone when they are down( clue, it’s harder for them to kick back)

Which sound very bleak

@stargirl1701 I’m glad you were able to smile. I get it, my DD is ASD and while it’s very infrequent she does lash out at her younger brother. Seeing your child hit, by anyone, triggers a primal protective, fight or flight response. You’re constantly going against your natural instincts to remove threat and protect in order to engage with and help the other child regulate. It’s utterly emotionally exhausting and utterly counter intuitive. I’ve no answers, but I see you.

Is she not allowed screens in her room?

If your DD is better outside then that’s where you should put her.

forest schools exist for ASD kids but they require a fight, sadly.

can you give her a safe outdoor space. A shed, with a beat up sofa etc sis she can be outside as much as possible.

you’re right to remove the screens. I do with my DC (ADHD and likely ASD, scored high on ADOS and will be seeking if asd diagnosis in future) because a screen free child is a much more pleasant child and the dopermine seeking from mine is reduced significantly.

medication for ADHD turned mine around.

walking is therapy. Hitting a bush with a stick is therapy. Den building. Fresh air. Sunshine. And the lower sensory onslaught from the woods compare to a home was therapy too. All helped my DC.

your DD requires the right school placement though.

but for summer I don’t disagree with your plan. A strict routine based approach might be exactly what she needs. Meal times laid out with expectations - eating alone, at the table, clearing plate when done then going to her room etc Perhaps consider throwing in walking as part of the routine to get her out and exercising.

you might find she feels secure enough in the routine that bathing might increase. I know it did for my DC but bathing was better than ‘being bored’ because of no screens and they knew they wouldn’t miss dinner if they had a bath because dinner would be at X time. 🤣

also, the early puberty years are the worst though. And I went through major police involvement for mine inc ruining away and suicidal ideation before secondary school started. For mine 11-13 was the hexenbeast years, gruesome in stench, mess and behaviour but covid was the turning point for us. The enforced lockdowns gave DC a chance to ‘unschool’ for nearly 3months, had regular contact with their one-2-one with no demands from me about school work except strict meal times and expected to bathe. then they returned to school before the majority did and that staggered return allowed them to want to be in school.

now through the brunt of puberty I have a ‘normal’ teen with ND issues but for the most part passes day to day as a typical teen with meltdowns that they get themselves out of more often than not and the self regulation is pretty good. Mines behind academically. But fuck that. They’ll catch up. Important thing is they can function in society for the most part and they want to be in society and so can I.

I wish you well.

I think you are doing the right thing. You have clear rules that are not too demanding - but consistency is key. Things may get worse before they get better, but stick to it.

I have to say it was a lot easier doing this with my son aged 3 with the support of a behavioural consultant, but I am sure it will be worth the effort for all of your family.

If she has pda as you mentioned she may, when she is in meltdown implementing strategies she has been taught to help calm her down is a massive demand. She will literally be unable to do it.

Maybe over time as she gets older she will find that easier but at the moment it sounds like she is burnout- now isn’t going to be that time.

My son is 32 now and has a diagnosis of Classic Kanners Autism, Tourette’s, Epilepsy and Bi-Polar disorder. I think we all have our own way and my way was to home school him for eg. I’m used to writing down quick notes or even sending a voice message to myself on WhatsApp. Then in the evening I would put them together. We also have a 5000 word dictionary I made for him over the years so that if he asked what something meant we’d look it up and repeat the explanation to him the same way each time. It covered the most random of things so it’s not really accurate to say it’s a 5000 word dictionary. It’s just his dictionary of many things.

now that I’m too old to look after him alone I have carers who live with me and work various shifts so it’s even more important for the notes to be made and gone over at a handover. For eg - certain questions would indicate something could be brewing. So would increased sweating. It’s easy to make a quick note of these things though they are all written up into a page of notes and observations at night. We can go back 15 years with them and occasionally we have had to go back that far when speaking to a new Dr for eg. We don’t live in the UK though and we had to find a way to support our son at home as it’s expected of family here. We don’t have care homes etc.

OP you are obviously hurting so much right now, but in between the rage and the burnout it is so obvious how much you have done for both your DDs and how much you care. You sound amazing, truly, but also only human.

It is okay to feel the way you do. I have had similar thoughts and worse about my DS, who sounds very similar in both age and presentation, for want of a better word. Even among parent carers talking about some of the darker thoughts and feelings we have still seems forbidden a lot of the time.

DD1 does not sound like a child that is coping with the school environment. If she was, whilst there would still inevitably be challenges, I think they would be more manageable for your family and you would then, slowly, be able to heal a little and build a better family life. Getting her into the right educational setting would seem to be the first step but my understanding is that you don’t have the same right to challenge decisions over placements as you do south of the border and possibly don’t even have the independent specialist schools that there are down here, as that sounds like where your DD probably needs to be. Online/home schooling will probably help her, but it won’t give you a break from her.

I wonder if the Contact, NAS or IPSEA helplines might have an idea about how to get her into a suitable school short of relocating south of the border, immediately requesting a EHNCA and then appealing and waiting a year for it all happen.

Also, I don’t know if you are in the head space for it now but have you looked into NVR courses? I am in two minds about it, but some people find them really helpful. They very much deal with redressing the balance within the household so that a child is not the centre of everything. Also gives you a bit of a support group whilst you are going through change, if that’s your sort of thing. (I just blubbed through mine!)

@x2boys you are indeed very kind to point that out, I apologise for the offence I've caused you

I have complete sympathy with you, OP.

I have no advice. I believe you when you say you have tried everything.

Mum to adult DS with ASD here.When he was little , he ate every meal in his room as he hated having to eat with others, he wouldn't eat certain foods at all, some on different plates as they could not touch. He had meltdowns if we tried to get him to eat with us. Now , he eats with the family . The point is that he wasn't being difficult , it really distressed him.
He liked to be in his room, it was quiet, he could sit there and do nothing if he wanted, he wasn't banished to his room, he could come and sit with us if he wanted. He liked the curtains to be closed all day so it was like twilight. I understand that you have reached the end of your tether , the only advice I would give is that, if being apart from the family in her own room , makes your child happy , then just do it.

Three other arseholes have already corrected her on her apparently egregious misspelling but your contribution to the thread is noted

in my experience in the first week or so of the holidays the kids have to have their meltdown(s), they have to get all the stress out that they've stored up over the last term. They have to act up, lash out, empty their backpack, whatever. I now know to be prepared for it but it's so often taken me by surprise.

I appreciate my situation is very different from yours, but might this be something that is happening?

My DD only baths with a screen. She watches Netflix in there - happy days! She still has to choose when to do it but we get a least a couple of baths a week now.

The same with going to bed - if she watches tv to fall asleep then her brain can switch off a bit and the anxiety reduces enough for her to get to sleep, leaving her in bed with a book just didn’t do that.

Everyone is different, autistic or not, so best to play around the let the child try different things and then they feed back on how that does or doesn’t help them.

I know you care for your child, but like someone else said on this thread, it sounds like your unwillingness to see that your future actions aren’t going to make things better makes you come across as ND yourself, so I can kind of understand, but unless your daughter feels safe to be able to express herself in her own home she will just learn to mask and masking is incredibly difficult to unlearn once it’s started, (speaking as someone who still doesn’t unmask outside of my inner family circle so I know what it’s like from your daughters perspective.) As for your younger daughter, she could maybe stand to have her own space in maybe a hobby that she gets to do with the other parent alone whilst one of you stay with your ND daughter. Just an idea.

Let's be clear about PDA. It may or may not exist. It has no current diagnosis. It is not recognised by NHS Scotland. There are no therapies to try to abate it.

She likes her own way. Don't we all. She can and will compromise though.

As I stated earlier, she only has a few demands placed on her (teeth, meds, seatbelt, bath and no violence). Teeth is a sensory issue so there are options. Meds is a sensory issue so there is an adjustment. Seatbelt is sensory so there is an adjustment. A bath is a transition issue - once in she doesn't want to get out. Therefore, she can be in as long as she needs and with as much hot water top ups as she wants.

Then we come to no violence. We fail at this every single time. We provided things other than humans to attack. We bought a dog to help co-regulate. We try and hear it off at the pass with gross motor activities.

Oh look, the misogynist from the previous thread also advocates physically abusing autistic children.

@EilonwyWithRedGoldHair - do understand. Honestly. I’ve been on more treatment for anxiety and depression in my sons lifetime than I care to remember. I’ve been battered black and blue. But somehow we’ve survived even though my son has 4dx now and will more than likely continue to deteriorate the older he gets. But we also have very good times and there is a lot of love and laughter at home as well.

I hope tomorrow is a better day for all of you. 💐

Also, is there some knd of support group for parents that might be a more understanding place than AIBU/Mumsnet, OP?

So you plan to isolate her from her family, remove screen time when she is alone and take away getting her cub scout badges, which is a massive positive in her life and something that is helping her develop skills and probably social skills too.

This is abusive.

@stargirl1701 much sympathy, no real advice I’ve never found the key either that makes them switch away from a meltdown to using the coping strategy and honestly completely understand why you’re exhausted with the endless strategies, advice and parental training that doesn’t work but someone gets paid to give or ticks off a box as ‘support provided’.

the frequency of the meltdowns sounds unbearable to me, and that you need to fight for more respite for the entire family. But I know that’s virtually impossible to get…

@Twilight7777

Yes, we do that. DD2 has an hour if swimming with DH and I joined her at Tae Kwon Do. She is whizzing through belts whilst I am stuck on yellow. Yet I go, every week because that hour means the world to her.

OP

Many will say you're unreasonable, cruel even - but I think that you're right, brave and wish you the best of luck.!!

@SerafinasGoose Well, I'm reading the thread and trying to think and choose my words carefully. I'm waiting for an autism diagnosis and my teenage son is too. I was brought up by cruel and abusive parents, who wouldn't allow me to eat in the same room as them for instance. So a bit concerned to read some of the things OP is saying.
But I'm not in her shoes, my son is quiet and only has occasional meltdowns and violence.
The 'restbite' thing just really grates sorry.