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

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.

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 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.

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

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

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

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.

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

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

The LA will try everything to not pay for a residential care place. It sounds to me like you have the ability to fight all the way. In this instance ChatGPT could really help focus on what you need to do to get the support you all need.

You would have to cope
What else could you do
Parents of children with disablities are not born with some innate abilty to cope but they have to get on with it.

I also a audhd/pda child with learning disabilities. He is extremely violent on occasions. Like PPs say I do sometimes look like I’ve gone a few rounds with Tyson now and again. When he was very small and both DP and I took him to school we actually made a point of both going in and explaining that we had no DV in our relationship and the bruises/black eye/fat lips was from our DS. They saw his behaviour and thankfully believed us.
Prior to being my sons carer (I was constantly called out of work to collect him from school so I had to leave) I was a support worker for adults with autism and challenging behaviour as it was known. I’ve worked in secure units, schools and colleges etc and I have very much been schooled around dealing with autism. My DP is the manager of a residential setting for care leavers most are ND, we get autism. I’m also late diagnosed adhd and if DP was to seek a diagnosis he’d likely get an autism diagnosis. Basically we understand and are versed in ND.
That’s helped in lots of ways understand our son, I often say had I worked at Tesco and this level of ND was something I’d never been exposed to, I’d have been in for a hell of a time. But it doesn’t make the actual parenting any easier. I still just want to cuddle my baby when he’s sad, tell him to stop being a knob when he’s being a knob, I want to make things better the way I could with a NT child, through changing the subject and distracting him with something else instead of the 6 hour meltdown that his perfect routine was screwed up by something that is so insignificant to me, I don’t even know what’s the problem. (Once the bin men arrived 7 at night when they usually arrive midday when he’d be at school. He headbutted a hole in his bedroom wall) basically don’t beat yourself up. You can have all the experience in the world with ND, parenting someone you love more than life itself and seeing them hurt and hurt you, nothing was ever able to prepare you for that 💐

Maybe when I’ve done this, I should My eye to other areas which children failed.
While it is great to highlight these issues, you’ve got bigger problems to deal with first in your home.
Start there.
There is tones of information on YouTube offering the tools to help.

I am not trying to underestimated your issues with DD as I also have a similar child, initially I wrongly assumed that she was very low on the spectrum, non verbal, unable to toilet alone, physically aggressive while being moved, requires feeding etc.
(My friend has an 11 like the description above).

You would be extremely lucky to access residential care for her if she is functioning somewhere in the middle.

You could put her in care, I’d feel awful putting an animal in care never mind my child as it’s a horrible place for most young people.

A care taker is not going to have the love you have inside, you would have to deal with social services etc. it’s not an easy task unless you throw her out on the street.

Introducing choice theory into your family. Cut out some special time with your other child, even if it’s a half an hour a day, set boundaries with punishment once she calms down, she might kick off again but she can’t scream forever.

There is a fine line between meltdown and boldness with children who suffer from PDA.

Turn her wrists inwards, turn her around and restrain if necessary and put out of the room.

You have to take back some of the control as the outside world is not going to be so accommodating.

My DS is moody, agressive, pda profile and has health conditions not associated with autism, now he’s nearly 12 he has learned a lot, it wasn’t easy.
If he wants his things he has to behave. I only give in to him when his immune system is weak and he’s sick. You have to implement a lot of changes and learn how to work with this child, I am
sure she doesn’t feel happy about it either.

My heart goes out to you. I have a friend who is thinking the same as you and going through the same,although her daughter is older. I don’t know how she does it. It sounds awful but I’m being totally honest I know I couldn’t have coped if I had had a child born with such problems as these or anything else. For those that are dealing with it I salute you and my heart ❤️ goes out to you.

I would ring children services and put in an urgent safeguarding for your other child who is at risk in her own home. Next time she assaults you ring the police. She won’t get arrested but it will highlight you are experiencing child on parent domestic abuse. Wishing you all the best xxx

This.

I have a friend who has an autistic child. Extremely violent, non verbal, non toilet trained. Once the child reached puberty they could no longer handle them and my friend would regularly look like she had gone 6 rounds with Mike Tyson (and so did her DH on occasion). They were refused for several years and when they tried to push in the basis it was unsafe for their other child who had to be physically locked in a bedroom with a bucket for a toilet at times (for own safety when sibling kicked off), they were told that the typical child could be taken into care as the solution😳.

I’m in Aus but have many medical colleagues in UK who have seen and heard of similar. So, push for it if needed, but don’t expect it will be a given or an easy ride to get there.

ETA - my friend finally got her child into residential care. It was once they were 18yo and she basically had to abandon them at a hospital. She was told previously if they did that earlier they would have been tried for child abandonment/neglect, but this wasn’t as easy to for a court if the child was an adult.

I have been through the same and my dc did go into residential care. That’s only because the family court were involved. I had been through what you have eg MPs, police, social services. My dc was also a serious danger to themself not just me and siblings so I also think that was a factor.

Totally agree
And I had a situation with a ten year old and a baby ..and the ten year old was horrendous..it was made clear to me who would be taken if I couldn't manage the violence of the ten year old

Also
You need to know , exactly what help you want ..what you think would fit with your family and what help your daughter would accept
There's no point ( as i ended up doing) fighting for help that your child won't accept.
We got a 9 hours a week care package from SS for my 26 year old son .and it was a disaster
The care agency sent a different member of staff every single time ,they were always one of two hours early or late .and the level of English was very poor.
They actually wrote on his notes he was on medication for schizophrenia..when he wasn't on any meds and had autism not schizophrenia.
Bit of a difference.....
My son couldn't engage, because he needed it to be the same person,with a reasonable level of spoken English.
It took me a long time to realise..my boys were my responsibility and I had toms age their behaviour myself.
Also I would say ..99% of all challenging behaviour in the home was down to inappropriate education settings
Once they were both in education that suited them ,they were much calmer and happier
Both mine had EOATS packages and tutors at home and on line school
Getting the right education in place will make a huge difference x

This is the reality
Its not a simple process or a quick fix.