AIBU to consider care for my autistic child to protect us?

[Myunhappyheart]

I am considering putting my child into care.

she is nearly 12. Autistic. Doesn’t go to school. NO ONE helps. I’ve been begging and pleading for help from the GP, CAMHS, police, school, children’s services for years and years.

in the last few days I’ve had been scratched so it bleeds, punched so hard it bleeds, had a bottle thrown at my face, bitten. Kicked. You name it. The language from her is disgusting.

it’s having a profound affect on both me and my other daughter.

I cannot keep doing this. There is no where left to turn now. I have done my best for both my children.

i cannot live like this any longer.

I am not that overwhelmed with it. I’m not anxious or depressed. This is a real, raw situation now. I can ruin her life and protect my other child’s.

when she hurts me i don’t feel pain anymore. I don’t react. I just use myself to protect my youngest child who is so wonderful, compassionate, successful and having her life ruined by the eldest. She deserves a life better than this.

It doesn't matter - the support is phonecall/online.

None of us have the manual on bringing up children, and certainly no manual would be able to cater to the individual that you are, as a parent, or the respective child and their interactions within an unique family unit.

What you're going through, only you know. Add to that, the added known and daily/hourly unknowns that can (and do) affect an ASC individual's life and, in turn, impact yours....

There are a number of questions that I've paraphrased for your situation...

• do you have support through being a member of an ASC parent-carer group?
• have you done the ASC and puberty course?
• if there's an online ASC group you're part of, have you reached out for help specifically for your situation and your location.

Please consider the above or reach out to parents of ASC individuals in your location on this forum. We've all had to struggle for basic help, but we know routes to help others because of this.

Keep the faith. Surround yourself with others who are strong and can help in the way you need.

Sending love and hugs

It would be a section 20. Temporary care and you retain PR and work on the relationship

My eldest was diagnosed with ADHD aged 11, and puberty made her horribly aggressive/violent. CAMHS were useless and offered her art therapy

In all seriousness, do a good self defence course so you are physically able to rebuff her safely. It's the only way because there is no help out there, the system is too broken.

My heart goes out to you - I can see how exhausted you are and I have been there - my child was suicidal rather than violent but also very aggressive.

I want to say something different from other posters. I think it's both important and urgent.

Your child is not actually at rock bottom - yet. And while it feels like hell, there is absolutely the chance to turn this around. In fact you must act rapidly and decisively - and you will all feel immediate relief.

I think she is on the cusp of total burnout and the way for you all to survive is to lean into it and get support for where you are NOW- not where you hope to be, or where you thought you were before.

You are saying you thought she was "a little bit autistic". I conclude from this that she is intelligent, has been able to mask successfully in earlier life, has achieved in the ways you think are ok - school and hobbies - but now everything is breaking and she can't sustain it any more.

So is she in crisis? I say yes - AT THE START OF CRISIS. She is just going into a deep burnout which you will need to navigate.

She goes to activities and courses. She has not yet fallen out of those BUT she is struggling socially- so without immediate and urgent support it is another ticking bomb.
She is able to spend time outdoors and in nature with you at work.She actually comes with you to work. That is a good sign as there are things that regulate her and shows she is not actually in full PDA anxious fearful refusal of everything. Not yet.
She has been going to school until very recently it sounds like, though the placement is breaking down. Last Tuesday is nothing!! it's only a few days!! She is literally in the middle of realising she CANNOT COPE AT SCHOOL. She is terrified on some level that she willl continue to be forced to go there. She doesn't have the words or emotional understanding or interoception to advocate for herself. No wonder the violence is escalating. She has no other way to communicate.

She is 12 - has she just finished year 7? In a mainstream state school? Did she have a transition earlier this year into a new school? What was her behaviour like a year ago?

What demands are on her now? It feels from your post that her violence is triggered from what you see as ordinary everyday tasks and demands. This makes me think you haven't quite grasped the type and quality of help she needs, although you have fought super hard for help to the point where you are exhausted.

The violence seems to have escalated now and she is hugely dysregulated a lot of the time. She is seeing "ordinary life" as too much, now. This is a crucial turning point.

I don't want to scare you- but although she is violent, her life has not yet completely halted. In some ways, you ain't seen nothing yet. You have not yet seen her burn out completely.

Crisis action plan for yourself and her, right now.

1. Accept, radically - the world as you knew is is GONE. You will not have 2 daughters nicely going to school and passing exams - not in the next 2 years at least - and your family and working life will be changing. You need to find out more about autism and burnout in girls - wherever you can, however you can. You must stop expecting that this is a blip and she can kind of keep going, things are about to stop and change. You are assuming she has capacity for quite a lot of normal life, when really she is almost totally depleted.

1. Tell her - when she is calm - that you have now realised and you understand she cannot manage things. You promise you will, as of today, not make her do ANYTHING. And certainly nothing that makes her anxious, scared or angry. You know she has been trying hard and you understand that people haven't seen this and haven't helped her enough. It's ok for her to be angry and alarmed (though if she hurts you or her sister you will take yourselves out of the room, to a place to keep yourselves safe). You are on her side. You will not make her go to school, not now, not next term, not ever. There will be no punishments or sanctions or expectations for now - only understanding. None of it matters, only safety matters.

1. Go completely, dramatically LOW DEMAND. Like, ZERO DEMAND. Demand so low you would not even think it is a demand. If that means she stays up all night and sleeps all day, spends 10 hours on YouTube, eats only beige food, doesn't leave the house, doesn't wash, then that might be where she is, for days, weeks or even months. Take as much off her as you can. Allow any and all special interests, in depth, for as long as she wants. Do not make her eat with the family, talk to anyone, deal with anything. DO NOT listen to the voice in your head that tells you boundaries are necessary and you are making a rod for your back, etc etc. That is bullshit. This is the only way.

1. Co regulate with her in a PDA friendly way. For mine at this point, this looked like saying "i notice you're wriggling about, the door to the toilet is open and it's free right now". "Here's a drink of water on your bedside table". As yes, the burnout got so severe she couldn't even accept the demands of her own body. I was putting her pants and socks on for her. She was a super bright high achieving verbal "totally normal" child before burnout- their capacity needs to fluctuate down to almost nothing, to allow recovery.

1. Does she have any ongoing suppoet already? Does she have an OT or speech and language therapist? Maybe get one - who understands that it will be incredibly slow progress and for months perhaps they will be just alongside her as she plays Dress to Impress or looks at pictures of horses, or whatever she is into. Then they can start understanding her world, helping her understand why things have felt so hard. But that is a while down the track.

1. Chuck money at the problem, if you can. I know this is hard. But get private, sympathetic, OT/psychotherapy/SLT/ whatever you can find. Just one individual to take you through and help you, one person who can do the relational work with you and her. You might also need to stop work. I'm really sorry. There is no cheap way to retain normal life at this point.

1. Let go of the hope that there will.be rescue from the system. "Putting her into care" is not easy, not simple, might not work the way you plan. It also puts you at the mercy of services which are not fit for purpose - camhs, social services, the LA. They have harmed you already and will all harm you further, your family will be fractured and both your daughters, and you, irreparably traumatised. Your younger daughter will either have survivor's guilt or be taken from you. I know it feels like the only way out, but there's another way.

In summary...
There is time to heal your family. You must stop. You must pause, stop pushing yourself, stop pushing her. Let her be in burnout, let yourself go down into it with her, and let yourselves all recover.

The thought of you pushing yourself hard at your desk, sore, angry and hurt, with nobody taking care of you, trying to collate all the information, trying to order and control - that makes me sympathise with you, so much. But that rigidity in you is part of the family dynamic too - you must try to let go of control. It will come back, renewed, with your energy, fresh and calm, I promise you.

The old life is dead. The violence will ease off as the pressure on her eases off.

I wish you so much luck and send as much care as I can xxx

I never knew this.They should be thoroughly & utterly ashamed of themselves, especially if its due to lack of money.

I'm very confused about the fact that you're willing to give your child away/put her into care but don't seem willing to take her to school, surely putting her into care is going to be 100x more traumatic that getting her to school?

I’m sorry, what? Are you responding to a different thread?

Unless you have been in the situation or had a summer job like mine when I helped care for children who screamed from day to night, punched staff in the face & worse, you have no idea how parents feel. They resort to residential. placements for the good of the child who receives constant care around the clock. The majority of people have no idea how it feels & often come out with comments that are designed to create guilt when there should be absolutely no guilt whatsoever. The huge guilt should be in the hands of societies lack of provision of enough places in residential care. The mere suggestion of removing a sibling with no additional needs from their home in order to stay safe is a disgrace & beyond comprehension.

I don’t want to sound like I am criticizing your opinion, but you are either autistic or not autistic. This suggests to me that you have not had help understanding autism. Where I live, if your child gets an autism diagnosis your family automatically gets NAS family training. You need to understand what your child needs.

That does not help your immediate problem. Don’t feel bad for asking for residential care/respite or whatever you can get.

I have a friend who I fear will be writing something very similar in a few years about her violent, PDA
/ autistic son. I fear for her safety. No one helps her (I can't - two of my own children to keep safe)

I don’t think you’re being unreasonable at all. I can’t imagine what you’re all going through and it’s infuriating that people have to push and push and push for help and support and still don’t get it. I have no words of wisdom but my heart goes out to you.

Its not about LA's not wanting to pay for residential care, its because a) generally speaking the outcomes for children in care are far worse than for those who stay with their family and thats across a number of different cohorts of children and a range of markers, but more practically b) because the type of residential setting or care that people often envisage as some sort of solution to this just isnt there. Care homes are run for profit, they hire basic staff, who do some training in usually NVR, PACE, health and safety, restraint this that and the other and they're good to go. Often they dont have a core staff team so agency come in day after day. People dont want to work with violent kids. You cant prosecute them or take any action when you're assaulted in work, often restraint leads to the child making an allegation that they were then assaulted and the provider has to then investigate and refer to LADO and those staff are suspended during that time, meaning more different staff have to be sourced. There just arent the people around who want to do this. Then you have to consider matching this child to the others that are already in the home, they also have to be kept safe. Care is not some magic wand that means the child is managed any better or differently, its just more hands on deck and means that the parent child relationship can be slightly improved.

There are few solutions for young people like this since the 90s/2000s where people clamoured for inclusion meaning specialist settings were deemed as inappropriate. My view is that when fairly young children like this should be in specialist educational settings, possibly also residential and I very strongly believe they should be medicated. But that is not a popular view and certainly one that CAMHS do not subscribe to.

OP - just wanted to say that you are not alone trying to deal with this. Keep going doing whatever you think is the best decision for your family.

My dd was very violent and a school refuser so I really feel for you. It's horrendous. I never felt as a parent I could call Social Services or the police on my own daughter.

We were fortunate that our other child managed to get a full bursary/scholarship to a local full boarding school which took him out of the home situation. (he was 13 at the time).
Cutting a very long story short, DD graduated from Uni with a degree and is doing really very well and passes as a 'together' adult who does not hit anyone!

It's bloody hard though. Keep going OP. And good luck.

I disagree.
I have two children with extra needs. DD is a pleasure, DS is the opposite. He fights every morning going to school, he’s on a reduced schedule in school as it makes it easier to get him there, he’s a grumpy wee fecker, anyone who hadn’t got maternal love for him wouldn’t understand him and wouldn’t treat him the way I do. I wouldn’t do that to him. Care is awful for unruly children who has extra needs and don’t have control over their own behaviour at times. Listen to the podcast patient 11 for an insight into residential care when they display mental health issues or aggression.
RTE in Ireland, done a secret investigation into the mh inpatient care from teenagers, it was beyond disturbing how they treat a child in meltdown.

Exactly. Residential care in reality is a shit show and often where predators go to work.

When she is violent call the police. Look into non violent resistance (NVR) . Long term i think you are going to have to consider a residential setting.

I wouldnt focus on CAMHS. I would focus on getting help from school and children's services.

A family I know with a non-verbal autistic child, now in his teens, call the police when their DS gets violent. They were advised to do this, and the police have been very supportive. It isn't their job, but MH services are so run down, that people like you are left with nowhere to go.

I'm so sorry you're going through this, and I wish I could offer more constructive help.

You are obviously a wonderful parent as will undoubtedly be the case for the majority of parents who decide a residential facility is the only option. It's also worth noting there a different degrees of autism etc some far more difficult than others where even a SEN school proves unsuccessful.

Parents should never be made to feel guilty any more than adults who decide the only way forward for their parents is residential care. Nobody knows every families individual circumstances. The one thing I do know is making these extremely hard decisions is not through lack of love or care for both the children & the elderly incapacitated. FWIW, I had a summer job in a residential care facility & the children were treated impeccably. You can't tar every establishment with the same brush.

Where I used to work we had young people from a local residential setting come to volunteer. One in particular was very hardworking, funny, sweet and a talented artist. One of the home staff told me he couldn't live at home because he was violent towards other members of his family. So the residential setting was obviously the best place for him.

I agree. And many do need residential care, the type with medical staff. Occupational therapy and speech and language training, but this is only available in severe cases, usually the person would have a severe learning disability too, non verbal or low verbal skills, poor personal care skills to none, requiring nappy changes and hygiene care.

Even in those places residents that are aggressive will be isolated.

They are not the sane respite centres available to children who are higher functioning. OP’s child has been to school although with difficulty, she can communicate, again with difficulty, she has a level of understanding if DM can work from home with her and she can argue back, she wouldn’t get a place in the medically focused residential care program.

If OP surrenders her she’ll end up a vulnerable children’s centre of some sort by the age of 14, they’re a private business now, mostly interested in the money.

It's OK to use AI to help you with a response @TakeThatAndParty81 , but it would be better to state that you have.

This is really good advice.

I care for children like your daughter, although younger. You could push for a section 20 but it would be really difficult and its meant to be a temporary situation. The problem is - theres a severe lack of carers. Especially specialist. Your daughter would not be able to safely be looked after by a mainstream carer. The other option is residential but the costs are so high that its unlikely it would be agreed.

If you do ask for a section 20 or SS involvement for removal of your DD, just be aware they will also look at your other DD as its the family as a whole they will look at, not just 1 child. Also be aware there is a huge push by SS and the family courts to keep families together. The threshold for removal is really, really high at the minute.

You could ask for respite if you think that would work for your family. You would have to really push for it though but its a possibility.

I dont mean to sound harsh, I am just trying to give you a realistic expectation around how little resources SS have at the moment. Particularly in children's services.

I would however, be looking into the advice given by calflions. Your DD sounds like she needs really low expectations of her. Also sounds like maybe she was masking in school prior and now its got too much? You say shes recently moved school, is that a specialist or mainstream?

Its really difficult x

Please don't feel guilty.its clear you have tried everything

Sorry to hear this @MyunhappyheartYou’re not alone in what you’re experiencing but that’s probably not that helpful.

You said you’re taking the school to tribunal. Do you mean you’re taking the LA to tribunal because the current school named in the EHCP is unsuitable? Or that you’re taking school to tribunal for disability discrimination?

I work with families in your situation. Please feel free to PM me.