Autistic teenager multiple suicide attempts, what to do

[RyanLondon]

Hi, I am a father of a 16-year-old teenage daughter. She is officially supposed to be in year 11, but she has barely been attending school for the last 3 years. She is an only child, and she has had, in relative terms, a fairly comfortable life. Before the age of 12/13, she did not show any autistic symptoms that we, as parents, teachers, her cousins or anyone else, noticed. She always struggled with friends.

She is the quiet type of autistic child, but at home, she is not quiet. She is not violent, and she does not swear, so most adults, and even professionals, struggle to pinpoint her issues as he comes across as a very polite, well-mannered teenager. And this is part of the problem; her issues are very deceptive, and as she wants people to like her, she presents as someone very together.

During the lockdown time, she started having issues concentrating. From there on, it has been a 0 to 100mph in less than 3 years. She has been in hospital at least 5 times, on two occasions for 2 weeks at a time. She was officially diagnosed as autistic about 6 months ago - so very late, which I believe is more common with girls. However, they suspected she was autistic for at least 1-2 years now. She has been seeing CAMHS on an almost weekly basis for about a year or more. She has been in a mental health facility, initially as a day patient, since October 2023. For the last 2-weeks, she has been a residential patient there because she cut her wrist, and she is adamant about ending her life. In short, since engaging with mental health services, her issues have been escalating.

She is our only child. She was at the top of her class, very academic and had high ambitions - which was all her, not us. She has now completely given up on life. Before you ask, no major trauma has happened in our family or her life that we can think of. We have thought of every possibility, from boys to sexual abuse and anything in between. Unless she tells us something or we see some evidence of something, we are lost. I have installed cameras inside my home in the communal areas for safety reasons. It is just the 3 of us at home, mum, daughter and me.

We live in London, and we are considering moving somewhere rural - for her as she likes the countryside. We have even considered moving abroad, somewhere like Portugal. However, we know that living with her is draining. Plus, there are limited mental health facilities in rural areas. You have to consider everything in situations like this. We also have to hide everything when she is home, from handwashing liquid to floss, because she can use almost anything to do self-harm. For me, the mental health services have been shockingly bad. At the same time, I accept that it's not easy to solve these things.

However, I will have a decision to make in the next 6-12 months, which makes me feel like a terrible parent. If she is not stable enough and her attempts don't stop, it will drain me and my wife - further. If we are not well and stable, then we cannot be there for her. We are already severely depressed. It is highly unlikely the NHS will consider a residential home for her - that is the feeling I get because she has supportive parents. So, what are we to do next? Because she is being released home next week. We took her out to a restaurant last night, and she made it fairly clear that she wants to end her life whenever she gets an opportunity. I am going to relay this message, but I am sure it won't change the plans set by the mental health team.

I would welcome any advice from parents with any knowledge or experience with mental health issues. Thank you.

Hi again OP, the doctor we see is Dr. Zoe Gilder, (North East Child Psychiatry) but she is based in Whitley Bay which is a bit far away for you I guess plus she does only take referrals from the north east. Sorry.

Brilliant.

@RyanLondon
What a nightmare for you and the family.
I really feel for you and wish things get better.
As someone who has 16 year old daughter who self harms and has had 3 suicide attempts, I know your anguish too well.
Especially the part where the child says they will do it again.
Every parent's worse fear.

I know it's very hard to know what to do. Your heart and brain will be in conflict.
I think finding a good psychologist will really help.
With medication, everyone says it takes a while to find the right one and it's a horrible process to go through.
But some people need it more than others. In your case I wouldn't hesitate to try mood stabilisers or anti psychotic.
We have been prescribed anti psychotic by camhs but so far dd doesn't show psychosis. But she does show extreme emotional dysregulation to the point of self harm and suicide.
I am coming around to accepting she will need anti psychotic medication.

I hope you find some peace and some way forward.
We need to take hope from poster's on the thread who say they have come out the other side.
I hope you and your wife are getting help for yourselves.
It can be absolutely soul destroying worrying about your daughter every second.
Hang in there and take care.

Hello, Everyone. I am sorry I haven't responded in the last few days. The truth is I/we have been drowning, and I haven't read any of the recent replies yet, but I did read the ones before. I will make time to read and respond to people who have been kind enough to make time to comment and advise.

Before I proceed, there is no need to read or reply if you find any of this triggering in any way. I don't want to ruin anyone's day or have it affect your mental health.

Anyway, we have had an absolute nightmare the last 72 hours. My daughter was released from residential on Wednesday to a day patient. I have had serious concerns about the facility she is in, and I will explain in a separate message and I have documented a lot of issues. Anyway, within 24-48 hours of being home, the situation escalated, and she had to be admitted to A&E on Thursday night, and she is still there.

It seems like my daughter's situation is constantly escalating. I can't take her for a walk nowadays because noise and sunlight is too much of an issue sometimes. So, I take her for walks to calm her down, and when I have been walking with her recently, noises from bin trucks, cars beeping or ambulance sirens cause her to scream and get angry in public. BTW, we live very centrally in London and some parts can get busy and noisy. This was never a big problem before. It was a minor issue before.

So, in the past 24-72 hours she has been constantly crying and screaming, at times banging her head against the wall and wanting to leave the house. She is saying she cannot think, there is too much information and so on. She has never been very physical with us. However, as we all know, most things progress over time, and she has become more physical recently. When her mum tried to stop her from leaving the house, she was very physical to her, and she scratched her mum in several places, which made her bleed - in a minor way. Nevertheless, it's a sign of her escalation. Her mum works with severely autistic kids, so she is trained in dealing with even non-verbal autistic kids. But that is useless because she is her mum, and there is an existing relationship there, so those techniques, etc, don't work when it's your kid.

I need some advice from parents who have been on a similar journey or know of anyone who has. Now, this will make us sound like horrible parents or cold. It hasn't been an easy thing to even think about. We are at a stage now where we feel she can no longer be kept safe at home. The situation is destroying three lives: my daughters as well as us (the parents). I haven't been able to work properly for at least 3 years now, and in case you are wondering, we don't get any benefits at all. We are in the problematic middle, where it's easy to slip through the benefits net. So, this situation is hurting us in many ways.

So, we spoke to CAMHS and said we could no longer keep her safe like this. They or the NHS needs to do something. So, we were told they would need Social Services involved if we wanted additional support. So far, we have not had Social Services involved because there is no risk in my daughter's home life. She is loved and taken care of; they know that and so does my daughter.

Anyway, I was under the impression that there are residential facilities (across the country) for young people who have very bad mental health issues, where they can get training and support either temporarily or on a mid to long-term basis. However, based on the response from the CAMHS team (to my wife as I wasn't there on that occasion), no such facilities exist in the UK (which I find hard to believe), and the best we can hope for is a couple of hours of carers a day.

I feel terrible saying this, but I know based on history and observing other teens in extreme mental health situations (I've worked at a hospital for a few years in my early years and saw a lot), where they want to end their life, if she is at home something terrible could happen and we will not be able to cope with her. Secondly, I feel in some way, they want to age her out so she stops becoming their problem.

She is 16 at the moment. In about a year and a half, she will be 18 when she is considered an adult, so she will become less important. Most of the homeless people on our streets have mental health issues in one form or another. I feel if we go with what they are saying, they are just putting a plaster over things and it is a matter of time before something extremely bad happens to her.

So, if you have knowledge or lived experience or know of anyone who has, please get back to me. Please let me know if such facilities exist within the NHS and how we can access them.

Thank you all for your time and thoughtful replies. The kindness of strangers often blows me away.

I’m a MH nurse. I’m really sorry you, and your DD, are going through this and I’m going to attempt to answer some of your questions. In short, yes, the kind of residential settings you mention exist, but they’re run by SS/the local authority and usually require the young person to be subject to a care order. As you have discovered, NHS hospitals are focused on rehabilitation and quick release. What kind of unit was your DD in before? Tier 4/PICU? Was she detained under the mental health act? Is the only diagnosis autism or are there other diagnoses? It’s tricky because there’s been recently been a move away from (for good reasons) long term detention of young people with autism under the MHA and so many units are unwilling to do so-but this doesn’t necessarily help young people who are very risky in their behaviour. I would suggest contacting social services and explaining that you don’t feel you can keep her safe. This should lead to a multi agency meeting with CAMHS. As you said, it’s important that transition preparation happens now so that adult services are aware. I really hope this helps 🙂

Hi Jennie, Thank you for your response. It's beneficial. My daughter is not under social services or under any care order. However, we gave CAMHS permission to engage the social services department because thats the only way for us to get carers - that's whats our CAMHS officer told us.

My daughter has been in "Acute" at the Coborn Centre for Adolescent Mental Health, which is based in the London Borough of Newham, although we don't live in that borough. I wasn't planning to name them, but it may help you to know. I believe it's a Tier 4 facility. Half or more of the patients came from areas on the other side of London, and many residents at one stage were from private schools - that's another story.

Anyway, in the early days, I started documenting things, and what I observed was, in my opinion, shocking. The service we received from a "normal NHS hospital kids/teen ward" vs what we got from Coborn was worlds apart. Normally, you would expect a mental health ward to be more compassionate, friendly, and understanding - but it was the normal hospital that was like that, and Coborn was the complete opposite.

I was considering making a video about it and publishing it so that people can see what parents face and it could be helpful for other parents in similar situations. The only reason I stopped myself was that I didn't want my daughter to suffer more than she had. I would not be shocked if you saw either that facility or others like it on programmes like Panorama.

I know my daughter has a complex situation, and like all places, there are some great staff there that want to help and mean well. I don't know what it is, if it's the system, the people or something else, it just is very unfriendly and cold. I don't know how else to describe it. There is a lot of management speak when you raise issues.

My daughter was not detained under the Mental Health Act. So, this is what they would describe as voluntary.

I want to take your advice and do what you suggested. Half of me wants to do it because we are not coping. The other half is scared. I am scared of placing her in a facility where she could suffer or get abused in some way. When I say she is very kid-like, I do mean that not just a naive dad who pretends their daughter is all innocent, etc.

I have watched many documentaries on some of these facilities (over the years), and I am genuinely worried that I could be making the wrong decision. Look at some of the BBC documentaries on mental health facilities if you have not watched them before.

and this

I’ve been in a similar situation with my dd, she’s now 22 at uni and doing well. I had to take her out of cahms, they were definitely making the situation worse. I gave up work. I spent two years barely allowing my dd out of my sight. We did GCSES together, got a dog, watched movies until 3 in the morning ( until she fell asleep on the sofa), went to tescos, cooked meals…… when I could see she was having a worse day, we’d go to the beach with the dog, it was absolutely relentless but keeping her occupied to the point of not having any time to think about her own issues definitely helped, she had no time for social media etc….
I found her a local counsellor who specialised in teenagers( we started talking as a three), so I could build up trust and she could have someone away from me. Very slowly she improved, and we began to build up trust.
You really need to find some counselling you can trust, who will include you, at least to start with.

I think @Maybeicanhelpyou is right. Talking to CAHMS can sometimes make things more stressful for parents and children unless you strike lucky with someone who can really empathise and give you a positive way forward. I think 16 is a very hard age with girls and I would not be wanting my child to be transferred to adult mental health services. I would try and find a private psychiatrist, private psychologist (or even any kind trustworthy person your child could confide in as often they find it hard to talk to parents at this age but will talk more freely to other adults they get on with). In the meantime if you have the means just take your daughter to a quieter place out of London for a holiday. Make future plans of things she wants to do and could look forward to. Write down small steps as to how she can gradually work towards them. Would noise cancelling headphones help with the noises she doesn't like....although maybe she could learn breathing techniques to cope better with them. NB. Obviously talk to professionals but also go with your parental gut instinct. No one cares more for your child than you do and you can get through this with a bit of real support that isn't box ticking. Try and remain outwardly calm however hard it is.

Hello Everyone, I am sorry about the radio silence. I have been very busy dealing with my daughter's situation. It's shocking the number of organisations I have to deal with.

Does anyone know about Quetipine? Has anyone had their child on it? My daughter has been tapered off Fluoxetine, she has been on zero for less than a week and she seems a bit calmer (even though she is still in residential). They are now keen to put her on Quetipine. I am FURIOUS. It's not just about the medication. The morons and that's me being polite because that's the politest word I can think of, and I will explain why.

I sent detailed emails to the staff and doctors at CAMHS and Coborn (Coborn Centre for Adolescent Mental Health) giving my opinion, you can even call it my diagnosis. I have no knowledge on psychology at all. But I am excellent at research and learning new stuff. They dismissed all the things that I said it was. Over the course of the last 3 years, they have proved me correct on all points. You may feel I am being harsh, but if you had witnessed what I have witnessed at this centre, you would use far worse words.

Anyway, I was always hoping to take her away, initially for 2 weeks, and if that worked well, and we were able to look after her on her own, we would rent a place somewhere rural and give up our work, and look after her full time. And if those 6 months went well, we would just buy something in a rural setting.

We were about to do that, but the Coborn centre didn't want her to leave at the moment. When places like this say they work with families, this is just BS, what they mean is that they tell you what to do. My daughter is in voluntarily, so she is not sectioned. I was going to ask her to be discharged, which led to an emergency meeting with the team. I have a friend who works in social services outside London, and they advised that, although there are many good ones, I am dealing with a snake pit, and many of them wouldn't think twice about reporting us as putting our child at risk. It wouldn't matter that we don't have a criminal background, that we work in the community and have enhanced DBS/CRB, none of that would matter, they would be paint us in a way that would be a red mark against our name. Since we are dealing with bureaucracy, my friend suggested seeing the two weeks through until she is discharged.

So, I no longer have faith in the system.

The fact that they now want Quetiapine makes me think they may now believe she could also suffer from schizophrenia (although that's not the only thing the medication is used for). It is one of the 3-things that I had mentioned over 6-12 months ago, and they had dismissed it immediately.

If she is suffering from schizophrenia, can I live with her somewhere rural using a medication like this? If you have had a child in a similar situation, please let me know. I suppose the only way I will know is by taking the step!

Hello OP,
Quiteapine is an anti psychotic but is also used as a mood stabiliser.
My daughter presents with extreme mood swings and was offered either queitiapine or aripriprazole even though she isn't schizophrenic.
I am sorry things are so hard for you.
Xx

Agreed. Quetiapine was prescribed for me when I was suffering with extreme sleep deprivation/insomnia and postnatal depression. Unfortunately my (now ex) husband saw the label and started telling everyone I was schizophrenic. Its important to understand drugs can be used for multiple purposes and to seek clarification without jumping to conclusions

Could she try an antidepressant ?

My daughter was put on quetiapine (on top of fluoxetine) when she had just rurned 17. She was severly depressed, highly anxious, self-harming and making suicide attempts. It calmed the anxiety somewhat and also turned her into a bit of a zombie so she had less energy to self-harm. I was torn between relief that the self-harm was less serious and aghast that I was allowing her to be drugged up. Ultimately it really only bought a bit of time as a few months later she spent 4 months as an in-patient.
Is there not a social worker in the CAMHS unit as my daughter was automatically assigned one when she was admitted and given another one when she was discharged (but I think that was because she was there over 3 months).
Things got very complicated once she turned 18 and was discharged from CAMHS. 6 years on I am just starting to think very cautiously that she is getting better. In the end a private therapist seeing her several times a week is what saved her. She is still under an NHS psychiatrist and on various types of medication.
As others have said if she is hearing voices from God try and get her referred to early intervention for psychosis services. Unlike most other mental health services they have target waiting times and so she should be seen a bit quicker.
I would also look into therapy for you as dealing with a suicidal child takes a huge toll on the parents.

Hi! A couple of things. Firstly you’re not alone, there are many of us who have been through similar and whose children have been failed by the system.

Quetiapine is a really helpful medication. For my friend it made the difference between being paralysed by emotions and living a fuller life, engaging in the wider community.

Yes to a move to the countryside! This can help massively with autistic overwhelm. Physically engaging her in the countryside environment or other physical environments can be a game changer. So gardening, walks, swimming in lakes, baking, DIY crafts, painting, board games, pottery, jewellery making, knitting. There is great therapeutic value in taking her away from her thoughts and focusing on physical activity. It’s grounding and the rhythm, pace, expression vital.

Would it help to take her out of school. Deregister her? If school is causing safeguarding issues, might be best to remove the school issue altogether? Remove the pressure.

What does she love OP? Can you all aim to do more of what she enjoys?

There are residential provisions and special schools and colleges for young people with autism and mental health issues. They are expensive, which is why the LA tend not to mention them. Some parents engage legal representation to ensure their child’s EHCP is met.

Online Naomi Fisher is very informative about home Ed, school refusal, autism.

Yes also get therapy for yourself and wife. It can be supportive

OP, Elysian schools could be worth looking at - they run from ages 11-17, so be quick.

@Roseau18 @forcedfun @DarkChocHolic @TheIceQween Thank you for taking the time to respond.

I realised that Quiteapine doesn't automatically mean schizophrenia. However, Fluoxetine is an antidepressant. So, Quiteapine also works to calm anxious people.

It feels like a conveyor belt. She hasn't been off meds for more than a week, and they want to start another one. I know the reason they want to free up space for the next person. She seemed a tiny bit better without the meds.

@Roseau18 Regarding social worker, CAMHS wanted to offload to social services. However, since social services feel we are going to extreme lengths to help our daughter and we are not putting her at risk in any way, they can't see how they can help or what else they can bring to the table.

Based on what you have all said about Quiteapine I feel like not doing it for now and seeing how it goes without anything. Because it feels like they are throwing things against the wall to see which sticks.

Just to add, she was probably going through withdrawl coming off the medication, it can take a while to clear from the system and in the process can make people even lower

Personally I’d support the quietapine

I'm
Very
Sorry you are going through this. It sounds a very heavy lead.
My dd is autistic diagnosed at 17 and the have helped her tho she has not been as severe as your dd

We live rurally only 30
Miles from
London but a small village

A dog and cats

Volunteering at horse stable

An excellent private psychiatrist.

CBT and emdr for
Trauma

Sertraline and propananol
For
Anxiety

Leaving school

A part time job in a field of interest.

Going on sertraline helped me too It stopped me from doom spiralling 24/7

A parenting course and book run by Suzanne alderton. That helped me examine my own behaviour.

She was in bed all day a year ago.

Now she goes out. Sees friends works. Does her hobbles again. We have a life back again too.

I really hope you can find a way forward. 💐

also pets, horse taming

@HeBeaverandSheBeaver Something similar to what you described has been my plan for the last 3-4 months. I was going to do an initial test run with 2 weeks using AirBnB somewhere rural, and then rent my house in London out to rent a place in the countryside somewhere. If that goes well I would just buy a place somewhere rural. We would both give up our jobs, as she is an only child. I would try to do some work from home if possible, otherwise we have other ways of surviving. We are not eligible for state support because we are in that uncomfortable middle ground.

The school has never been an obstacle. We had a tiny window of time to test things a few weeks ago during half term because my wife works at a school. But the morons at the Coborn had to cause issues. I have a CETR tomorrow and will ask her to be discharged after this round. I am happy to put my hands up and say my way didn't work. But I need to feel that I have tried and done my best.

@DodgeDoggie I am not against Quiteapine. She has only been off meds for less than a week. She has put on about 2 stones in the last 3-4 months. She has been tapering down for 2-3 weeks. So, I would like to see at least a month without anything. I don't think what I am saying to the medical people is unreasonable as my daughter is not a danger to others. But I get what you are saying.

I will write more when I have a bit more time.

Which part of the country will you look at moving to?

I recognise some of this. Sorry it’s all so awful.

2 things strike me.

1. suddenly couldn’t study for longer than 15 minutes and struggling with severe sensory issues. This sounds like burnout. Have you removed all demands?
2. you mention something about her brain working at 500 miles an hour. Has she been screened for ADHD?

I hope it all works out for you.

My ds who has asd was paralysed with anxiety, he could only whisper to me, no one else. I could coax him into the garden in the dark for a minute a couple of times a week. He was too anxious to even use a keyboard to communicate. It was so sad and awful.

I took him out of education completely (at 16) and out of camhs totally. I gave up work and we just did absolutely everything together all the time. He improved immeasurably and now is a happy person.

He doesn't work or study, but he's alive and happy. He's on full disability allowances and i don't want him to work or study in the future either, he just can't cope with it.