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.

Well, congrats on being psychic I suppose.

Thank you - we do have a weighted blanket, it saved my sanity as without it he was waking every two hours every night., and I'd have to go in to him until he settled again. Now he mostly sleeps through.

I think he gets anxious on his own, which obviously doesn't help him fall asleep. He won't go up to bed at bedtime anymore - and tbh I don't blame him, if I had to go up at 8 and stay in my room for at least four hours before falling asleep I'd be pretty fed up as well.

We have an essential oil diffuser thing that he likes. We usually go up about 10-10.30, he sits on his exercise ball and watches a video on youtube and eats some ice, then he cleans his teeth (unless he's extremely dysregulated), snuggles into bed and watches another video then settles down to sleep about 11/11.15 and is usually asleep by 12.30, though some nights its 1am. Most nights out cat joins us and DS likes that.

He won't wear anything on his wrist, and won't wear socks to bed (he has sensory issues with things on his feet). We've asked for melatonin but nobody will do anything at the moment - camhs wouldn't do anything as they say it's ND, but we've not had the assessment yet, though the various people involved now put in a huge amount of work and got his referral expedited so the appointment is coming up and it will have been a year long wait rather than over two. Everyone says he's ND though, even if they can only say it off the record.

Thank you for the suggestions though. We've been using a different oil in the diffuser - that was recommended to us by someone whose son is ASD, but I'll get some lavender as well - or you can get microwave things with lavender in I think - like a cuddly toy you heat up and it smells of lavender? - DS loves cuddly toys so that might work in the winter (he also loves an electric blanket.)

Is she allowed to have her meals on her own?
Is she allowed screens on her room?

This is a very sad post. I feel for you all. There are no easy answers. You may have said but is there a chance she can get a break from the family home, to help you all. Would you consider any type of residential placement?

Thanks to everyone who has offered advice and support to the OP. As @stargirl1701 has explained she is finding her situation intolerable, we'd ask that you consider this in your responses and show some understanding of how difficult things are right now.

We're also so sorry to hear that many of you are struggling - you may find the resources in our Mental health webguide useful.

Here are some further resources that may be useful for parents and carers of autistic children and young people:
https://www.ambitiousaboutautism.org.uk/
https://www.annakennedyonline.com/
https://autismearlysupport.org.uk/

Thanks.
MNHQ

I agree physicsl violence is unacceptable. Think of your other child growing up with this, is residential care an option., I dont think I could cope if the violemce is on a daily basis.

at no point did I say you were cruel and abusive. You may have been mixing me up with a different poster. I believe I sympathised with your plight and made some suggestions

That sounds like PTSD in you... There used to a radio jingle years ago that sounded {Momentarily} like an angry relative before they kicked off- It used to make me tense up immediately.

Wow, I'm drained by just reading through your posts OP.
I sincerely hope you can find a route to improving the situation and I completely get why you feel utterly exhausted by the endless battle. You are something special to be dealing with that day in day out. Your a proper rock even if you feel like a puddle sometimes x

Crosspost with MN message.

Not sure if this has been said but could you possibly be letting her have to may choices?
As in that is sending her brain into a tissy? what to pick what to pick and it having to be snap choices. Taking them away may help.
I understand where you are coming from with the needs of the many coming first, it sounds like you all walk on egg shell around her. That can't be pleasant for any of you.
I wish you all the best OP, over the next 2 weeks while you break in the new routine, what ever it is, it may be tough.

@IAmSalmaFuckingHayek

Absolutely. As I said, only a few demands are requirements.

Teeth
Seatbelt
Bathing once a week
Meds
No violence

triforcetotem
All I can say to you is: the mother is very grateful.

@Orchidgal that might be the case for your child, but it isn’t the case for all.

It’s really not. The hatred toward this child is beyond what’s acceptable. She needs to be anywhere but that home.

Yeah, best not to comment because you don't have autistic dc or work with autistic people - so you don't have a single clue

The cultural differences between autistic people and neurotypical people are illustrated beautifully by the above quote thread.

Autistic people appreciate direct communication. Your idea of rudeness may well be our idea of greatly-appreciated clarity.

All the posters suggesting a pda diagnosis are you aware many counties (eg norfolk where I live) don’t diagnose this and local authorities are reluctant to even acknowledge private daignosis? It’s one of those post code lotteries.

I do agree though that looking at pda specific strategies and advise might be useful. Some of it is quite different to normal ASD advice.

Better that than being someone posting and not offering much of anything that’s helpful.

@LilyPark

No, you didn't.

It's the juxtaposition that I'm referring to.

Short term I agree with this. You have to put boundaries in place to ensure the rest of your safety/sanity.

I completely empathise. I also have a child with SEN with violent and challenging behaviour. I'd highly recommend joining the Newbold Hope family support group on Facebook. You will be able to talk to parents who understand and won't judge you. I have found the group very helpful 💐

@oakleaffy

I did think that afterwards.

What the hell I do about that, I don't know.

I know you're busy answering and reading other threads but I am so intrigued why you think feeding daughter in room is such an odd suggestion?

I am where you are.
TAF did nothing.
CIN team did nothing.
Independent special school PX'd him.
My application for residential special school was deemed to be just to meet MY needs so was refused.
DGC's social worker has met him once in four months for ten minutes.
I have applied for section 20 so I can hopefully rebuild a relationship from afar.

Honestly, if you haven't walked this road, with stones in your shoes and sand in your eyes, please don't think that we haven't tried EVERYTHING.

I too am DONE. I have no more care left in me.

Hugs OP - and solidarity x