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 have worked with young adults with autism and I currently work with kids with autism. I take my hat off to parents who do it 24/7. It's hard when you are a team of people with professional backup, I can only begin to imagine how difficult it is to be parents at home trying to parent not only an autistic child, but one with challenging behaviour and look after siblings of that child. It's so very easy to judge. I hope you are all ok. Social services are letting you down big time. Do cahms help at all? Is she on any medication? Wish you all the best.

Do you get disability for her, have you tried the family fund. I'm trying to think what is available for your youngest. I'm so sorry for suggesting you are abusive, I'm a bloody muppet sometimes

I do really feel for you OP, 3 autistic children and an autistic husband here, at least 2 of whom have PDA.
The big issue for us is always meeting one person's needs at the expense of another. There is no right way, there is just the least worst way.
For me, finding Suzanne Alderson's course, Partnering not Parenting, has been a godsend. It teaches you strategies that you don't believe could work, but do.
I can't help with the legalities around Scottish provision and care, but I would suggest

• Child in Need plan - make it clear that you are not coping and need respite. Your autistic daughter is the one who needs to be taken out of the equation sometimes, so that the three of you can regroup and heal. In England there is something called Short Breaks and Local Offers, which provides this, I hope there's something similar in Scotalnd
• A schedule for you all. Preferably a visual one so everyone knows what to expect. I used to be spontaneous and really miss the days where I could just pop to the pub or accept a last minute offer, but I value my sanity more. So weekly and daily planner. The daily planner needs to have everything on for your daughter.
• Don't punish everyone by taking away screen time. There are loads of research papers published about the benefits of screentime for autistic PDA. Have a look at MindJam website - it is an online service, so you may be able to access it, it provides mentorship for your autistic children through gaming. Have a strategy on gaming that you try for a week. Ours is that we have certain tasks (brushing teeth, getting dressed, having breakfast) before screen time. We have an agreement with him that we have an hour on an hour off. If he is rude or abusive either online or in person it goes for the rest of the day. Don't make any consequence longer than that
• Allow the screentime to happen in her bedroom or in a safe space that's not family space. I resisted this for ages, but now it means he can self regulate and stim out of the way of the rest of the family. We have all safe family protection software enabled and I know all passwords and can check all history. He has clear written guidelines about who he can talk to online (RL friends) and what information he can share.
• Take away all other demands. Basic levels of personal hygiene and no violence are our only demands in the holidays. We encourage him to have some exercise but that is hit and miss. With our girls, the screen issue isn't so bad, and it's getting them out of their bedrooms that is the issue.
• Food - we all eat separately and different things. It's a faff, but better than the explosions. Get her to meal plan with you and allow her to feel in charge. If she wants pasta every day, let her have it. It is not worth the battle. Try and sneak a multi vitamin in - mine will eat the gummies, but since I stopped the battle of family meals with veg it made life so much easier. She may hate the noise of other people eating (one of mine) or need a screen to regulate (my son), or hate the smell of other people's food (my third). Let go of any expectation about how a "normal" family operates.
• Make sure you have proper time off. Your dd2 gets days out with one of you at a time. You both get a night out with friends each week.

Big hugs because it's unrelentingly tough and no-one who isn't living it can possibly understand.

Obviously in an ideal world the family would remain as one unit but it sounds like the OP is facing a pretty extreme situation. At least this way some of the bonds between the OP and their child may be able to stay intact (if any remain) or even recover and the other child is protected. Each parent also effectively gets a week off and a chance to relax and recover.

I am not sure if these are still used. Colleagues dd had one and it kept her safe until SW insisted it was removed when she got to 18. A few days later she got out of the house at 5 am wearing only a PJ top, luckily caught up with quickly.
https://safespaces.co.uk/

OP, I’m sorry, you sound at the end of your tether. I hope somewhere there’s help for you and your family.

@Bigbouncyorange

She's not at school. We're into the second week of the summer holidays.

We use gross motor activities to try and head off meltdowns on the advice of OT. Yes to a trampoline. She likes a bicycle ride most of all. We do this.

Oh OP, I felt like crying for you as I read my way through this thread.

I’m not in your situation as my children are NT, but your life sounds so, so difficult. I can’t even imagine how you have managed to cope for this long.

And I can totally see why you are so heartbroken for your youngest daughter, if I were to picture one of my children living in fear, terrified of their sibling and hiding in their room and crying, well it would truly pain me so it must kill you to be witnessing it for real 😢

I can totally understand why you’re done.

It sounds like you have tried everything you could possibly have tried over the last 8ish years and if nothing is working, and things are just getting worse then it’s understandable that you just want to take charge of the situation.

You should not be subjected to violence and biting in your own home. Your second child should not be living in fear and things shouldn’t be so bad that you are seriously considering splitting up the household and the marriage just so you and your DH can have some respite and so your youngest daughter doesn’t have to live with her sibling.

It sounds like a truly horrendous situation.

The best of luck in however you choose to move forwards x

@strawberrywhisk

She is not being naughty.

She was annoyed with her sister so lashed out verbally and physically. Then AFTER being given a consequence had a meltdown.

It's so so hard. It's relentless and lonely and exhausting. My heart goes out to you OP, from one ASD parent to another

I'm sorry if this is a naive suggestion, I only have experience of one autistic person, whom I've known since she was 7 (she's now 29). She had a very difficult, challenging period which coincided with adolescence - violent outbursts, dangerous behaviour to her sibling and family. Mood stabilisers proved the answer in her case, and I think she has responded well to a medication route pretty much for half her life. Would this be worth investigating? (sorry if you already have, but I don't think you have mentioned it).

I grew up with two siblings, one was just terrible, aggressive refused school and gave my parents a terrible time. The other she would just be self absorbed, quick tempered and self excuse it. They both were diagnosed with autism and ADHD in their late 30s early forties.

It was horrible for my parents but also for me as the youngest, I wish they had prioritised me occasionally. I would cover my ears and hide under the covers. Anyway not close to any of them and have my lovely husband and kids now.

Sounds like you are dealing with a lot OP and you have been dealt a terrible hand. You are probably doing a great job, be nice to yourself.

@gamerchick

We've been trying that since last October. It's getting worse with that instead of better.

I agree with some pps that PDA type behaviours do not always respond best to low demands. For my DD, who has a PDA style ASD, she responds best to very clear and firm boundaries. If we pander to her or avoid demands or generally tip toe and live our lives on egg shells she picks up on this and kicks off about something else anyway. She doesn’t respond well to very sudden demands but we have an extremely strict and predictable routine with clear and consistent consequences for misbehaviour. She is not allowed to get off Scott free just because she has ASD. She does not have a learning disability, she is a bright girl and is capable of learning to control her emotions and behaviour even though it may be more difficult for her. She knows the difference between right and wrong. Having low expectations of her would do her a huge disservice.

I really feel for you, OP.
I have no answers, just sympathy.

There was a similar thread a week or so ago.

@OnedayIwillfeelfree

No. There will be NO violence. I haven't spent 11 years teaching that to my children to then strike them myself.

She is NOT non-verbal. She has no intellectual disability.

She needs consistency, giving in to her for a quiet life never works. I am all for authoritative parenting if it is done fairly.

Clearly set out the rules and what will happen if they are broken. If she becomes violent walk away, lock yourself and other child in the bathroom if you have to with a good book. Don't argue with her, if she answers back just walk away, you've said your piece. Limit screens severely but do allow her a little time each day if she's been good, removing them completely will give her no incentive to behave. If she misbehaves she loses 5 minutes. Keep her occupied. Go out for walks, burn off some energy. Climb trees, build a fort, have a race. And only use the word no when it really matters. And lots of praise and hugs when she's good.

Sorry, haven't read the entire thread as it's moving too quickly, but when you say "School have made numerous adjustments. All to no avail" what adjustments has the school made?

Does she have an EHCP?
Does she attend a special school?

This sounds like the classic coke bottle effect of needs not being met at school, so it all comes out at home.

My DD is a model student at school, but is a master at masking. She also used to have awful meltdowns at home, but once her needs were properly met at school, these went away. I often say to the school that a measure of how well they are accommodating her needs at school is how she is at home.

Might be worth thinking about.

Views like you're are important too. Autism doesn't just affect the individual. I know I couldn't do it

Respite, not restbite. Just might be useful for future reference.

That’s the very definition of Autism. It comes from the Greek word Autos meaning Self.

I really do understand how you feel but you’ll get absolutely no where enforcing all of the new changes you want to make. It’s far better to take a very slow approach to it and see how one change works out over months before implementing another one.

Also, have you heard of, or been in touch with, The Challenging Behaviour Foundation.

There’s also the low arousal technique to Autism which works very well.

@TwoFluffyDogsOnMyBed

I am getting a break this afternoon. DD2 is now making a Horrible Histories puzzle.

So sorry you're going through this, OP. I have no experience of it so I can't offer advice, but I would have reached this stage much sooner than it's taken you.

Not sure what to say but I get where you’re coming from. My brother was the same. Meltdowns every holiday, at dinner, screaming and cursing at me all the time. Our life revolved around him.

There was a holiday I was really looking forward to and we ended up spending most of it in the bloody hotel because he hated the outdoors. He has a ridiculously limited diet and I never got to try so many foods till I was much older and could go out and buy my own. I couldn’t even watch the damn TV in my own living room because he had full control of it. If I said something he didn’t like (it can be as minor as liking a character in a movie he hated) he’d turn it into a full blown argument and the shouting would never stop.

I eventually left home and am now NC with my family. I understand the situation but it doesn’t hurt less than I was never prioritised.

My heart goes out to you OP. I grew up as a sibling of an autistic brother and it was hell. I know they don't understand and can't help it etc but thank you for considering your other child.

He started to respond to her meltdowns by smacking her on her hand, and she responded every time. There was a time she did not like the colour red, so he laid a red blanket on the floor, and when she went into meltdown he slapped the back of her hand, and within minutes she was walking across it.

You’re not advocating striking an autistic child are you. Illegal in Scotland to physically discipline children and not likely to be awfully effective, the assumption seems to be smacking the child regulated her in some way - much more likely she was shocked into masking.