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.

@HeBeaverandSheBeaver
That's very useful insight into ADHD and ASD.
I can relate to a lot of what you say. DD isn't diagnosed with ASD yet but many health professionals have commented on her possibly being autistic.

Anything is an option.... art, dance, music, drama
I just wanted to mention this in case you're unaware, having to make even simple choices can be paralysing for some people wih MH conditions. Choice paralysis can be a facet of ADHD too. When my DDs anxiety is bad she can't make even very simple choices like does she want cereal or toast. When the present feels overwhelming she might not he able to imagine a future that is anything but more of the same.

As most of you are aware, there is always a trade-off with most things in life, so the Quetipine "may" help in some way, but there may be a price to pay somewhere along the long. It sometimes feels like choosing which is the better poison. I know that sounds negative. Nebvertheless if the good outweighs the bad, then I think I am good with it. I suppose I have to be!
It's essentially truthful not negative. Medication in any complex or chronic condition is a balance of working out if the good outweighs the bad or not. Good doctors make judgement calls weighing risks and benefits and the severity of what they're trying to alleviate.

My antidepressants made me put on a lot of weight, they also stopped me having panic attacks and allow me to sleep and continue functioning with a severe chronic health condition, those side effects are worth it in my specific situation.

My DD is younger than yours, she's a tween not a teen. She is Autistic and has anxiety. About 12 months ago after some things i witnessed her doing we had an emergency session with her psychologist to make a suicide safety plan. It still feels surreal thinking my 10 year old wanted to die and harmed herself and needed a safety plan. She was already trialing a low dose of setraline at the time due to earlier suicidal ideation and self harm, which started around 8 years old. It stepped up very suddenly, I don't know why. Two days after that I took her to our doctor and she doubled the setraline. Along with therapy it pulled DD out of it. I know we haven't beaten it for good, its still there might be a lifelong battle for her. Im terrified we'll end up there again. I know Im going to carry the scars of seeing her do that for the rest of life.

Its not the answer for everyone, but for some the right antidepressant and the right therapist can make a big difference. We got lucky with the first antidepressant we trialed. It helped give DD the mental capacity to engage with therapy. DD is on her fourth psychologist, she really clicked with this one and is making progress. Im sorry things have been so hard for you all.

With her inpatient stays it's possible sensory issues and other facets of Autism might be making those challenging environments for her to be in. My middle DS has lots of sensory issues and he really can't stand hospitals even briefly. I don't know what the inpatient part of that particular hospital is like, I know DS would struggle with things like bright lights, noise, being out of routine, the different environment, different people (Id assume patients at least would change) its a place he would either shut down completely in or lash out. In my experience sensory issues can have a big impact on mental ability too. It sort of makes your brain feel like you're thinking through fog.when things are bad . We live in a town, but not a busy one. I can't cope with cities, I can't imagine my middle boy ever coping well with the sensory overwhelm he'd have living somewhere busy and noisy and bright. I could see now moving somewhere quieter might be helpful for your DD.

Op what about animal therapy would that be an option for her?
It might calm her anxiety and make her feel more calm.

Hi OP, I’m an autistic adult but I used to be an autistic teenager like your daughter is now. It’s quite common for autistic people to manage ok in a small primary school but then struggle in a big noisy secondary school. Also at primary school there’s an emphasis on “everyone playing nicely together” whereas at secondary school kids start to mature socially and exclude other kids. It’s especially difficult for girls, whose social relationships are more complex. Boys tend to bond over activities and sports, so it’s easier for autistic boys to involve themselves. Whereas girls tend to bond through socialising and talking, so autistic girls are just completely shut out.

Being excluded is an awful experience. You’re made to feel like you’re undesirable, broken, basically a leper. Everyone hates you no matter how hard you try, and maybe you’re also being physically attacked by people whenever the opportunity arises, because they hate you so much they actually want to hurt you. Then you realise that will never change, this is your life - and that’s when you try to kill yourself. Or you self harm, because you’re sick of people ignoring your distress, and you want them to pay attention and realise you’re not ok.

People with autism want friendships and relationships, we just don’t know how to get them, because people don’t want to be friends with us. Being isolated is upsetting and hurtful, just the same as it would be for a normal person. The behaviour you describe where your daughter totally rejects men, is very common - even normal friendship is unattainable, so flirting and attraction are terrifying and just too much to handle, hence why the safest response is just to reject it completely.

On top of this you end up being pathologised - told you’re psychologically abnormal, that you’re a problem, given drugs to change your behaviour, etc. That absolutely destroys you because it makes you believe that you’re broken.

OP what you need to understand (and what your daughter needs to understand) is that she isn’t a broken normal person. She’s a perfectly healthy autistic person, struggling to cope in a world that just isn’t set up for her needs. Autism doesn’t need drugs. It needs support and understanding. When autistic people get depressed it’s no use drugging them so they can cope with being miserable - a better approach is to actually tackle the thing that’s making them miserable, which is probably isolation and exclusion and just being overwhelmed by everything.

I’m willing to bet that a large part of the problem is that your daughter is isolated and excluded, and on top of that she’s being treated like she’s mentally unwell, given drugs and put in hospital. When in actual fact her circumstances are shit and it’s totally normal for her to respond by feeling depressed and suicidal.

What helped me was leaving the school where I was being attacked and excluded, and going to a different place where people treated me like a human being. It took a long time and it was a difficult transition, because I’d been mistreated for so long that I was scared of people. I thought nobody would ever like me so I didn’t even want to try to make friends. It was also helpful for me to meet other people my age who also had autism but were of normal intelligence - people like me who I could relate to. I took up some hobbies - one that especially helped me was playing Dungeons and Dragons, because you play a character so you don’t have to be yourself, and there were older people in the group who were kinder (kids can be cruel and selfish). I needed to understand that I wasn’t facing a lifetime of being mistreated and excluded, so I didn’t need to kill myself.

Sorry this has ended up being a bit of a ramble, but hopefully some of it has been helpful for you. I’ve been there so I really feel for your daughter.

Really interesting insightful post

@Lumiodes
Thanks very much for your insight into friendships for autistic girls.
My DD isn't yet diagnosed as autistic (she is ADD) but always struggled with friendships since primary.
I have always found she tries too hard to fit in and she says people don't like her true self. "I am not likeable" she says often and before this whole ND journey, I have dismissed it completely.
I now get how hard it is for such people.
Your post makes a lot of sense and I am grateful for your insight.

Xx

Girls often only get diagnosed late, generally they often mask successfully through primary, so give the impression of coping and having minimal autistic behaviours. It’s often when girls with autism hit big changes (secondary school, GCSE’s, puberty, covid pandemic) that things fall apart.

@EliflurtleAndTheInfiniteMadness I am glad you said this "having to make even simple choices can be paralysing for some people wih MH conditions. Choice paralysis can be a facet of ADHD too." I wasn't aware of this. My daughter is not able to make the most simplest of choices. If I ask her something as simple as choosing which fast meal to choose or whether she wants to stay in the hospital or leave she gets stressed is unable to make decisions. This has been an issue with her since I can remeber - from 5 years of age. I am very angry and frustrated that we didn't think it was autism.

@EliflurtleAndTheInfiniteMadness It blows my mind that an 8-year old can get so depressed that they want to end things. I know my daughter was extremely unhappy at primary school, because girls are so cruel to each other, boys in different ways, but maybe my age, but I struggle to think of an 8-year old in that way.

@cornflower21 It's something I am considering.

@Lumiodes I have been really angry with myself recently. My daughter was in a primary school where she was very unhappy. She couldn't connect with other kids. Academically she did very well, but she did not have any friends but one. She would end up walking the playground on her own most of the time. Although I was aware of most of this and I tried to do something about it, I couldn't make people be her friend.

The only reason I was aware of it was possibly because I know some of the signs from my own childhood. However, my symptoms were opposite or different in many ways. I made friends easily (because it was needed for survival) but I felt no connection to most, and its probablyt the reasonw why when I became an adult and financially independent, I don't have many friends now. I had way too much energy which manifested in other ways, and I struggled academically until I got to university. There is so much more. When I was growing up, there was no such things as autism and ADHD (and it wasn't that long ago) and anyone who was diabled or had mental health issues went to a seperate school and they were made fun of. It now feels like another world.

So, although I saw some of the signs, she also presented "normal" in other ways, that it was hard to know. Most of the so called professionals wouldn't believe she was autistic even after she was hospitalised several times, because she masks shockingly well as is articulate, knowledgeable, argues like a lawyer, and is mostly well composed when speaking to strangers.

I also had to fight everyone else, including her mum, who wouldn't accept she was "differrent". But I seriously regret not spotting it sooner. I don't know if I would have been able to convince anyone and if it would have made any difference as the most pronounced signs were only truggered after puberty.

@Lumiodes I have been anti any medication most of my life, unlesss there is no other option. As much as what you say about autistic kids not needing drugs, I would be shocked and my mind blown if someone could convince my daughter not to kill herself by changing, school, locations, hobbies etc. We have been willing to go above and beyond, and that includes every single thing that you can think of. Her doing nothing, doing something, new school, no-school, new area, new house and new friends, even a new country. I am about to try some of those things again in about a week or so. I wish you were right, and it would be great if you were. But autistics people like all other people, come in various shades, and each one is different. What might work for one, may not work for another. That's all I know from my very limited experience.

Some of you suggested that I should get Social Services involved. You might recall that I said I am struggling with Social Services, and it needs a thread in its own right. Anyway, I started a thread about it; the link is below:
I need advice about Social Services relating to an Autistic child

Thank you to everyone for the help and advice.

Honest. Please do t blame your self.

My dd could get an academy award for her masking. She had therapy for a year and her therapist a professional clinical psychologist didn't spot it.

I knew she was quickly as a toddler but as she got with other girls she masks so well it was never flagged up at all.
Again very bright. Early talker. Makes eye contact fine learnt how to hide it very young until she hit 17 and had a huge burnout. Tho she did have signs from about 13. Phobias. School anxiety. I just thought she was a worrier.

But the trantrum Queen as a toddler.

She told me she was a people pleaser with her peers for an easy life.

Anyway please don't blame yourself. It's totally normal to feel a sense of grief for the life you thought she and your family would have but she will have a different life but it need not be a bad one. She just needs to find her thing. Her people. Her tolerance

My daughter is happy now. She has a small group of friends and goes to work. She gets super tired and can be moody but honestly a year ago we were in a pit of doom

It does get better.

I recommend Suzanne's aldertons book "never let go"

I have it in audible and listen to it a lot. It really helps on those bad days. 💐

Quirky not quickly

I wish MN had a edit button.

How are things x

I hope things are going okay for you OP.

Similar here and I'm also at my wits end. Not diagnosed as autistic but 99% sure, having to go through the hoops just to get on the lengthy waiting list.
My DD hates school, cuts herself, bullied etc and I can't afford private help. It's just horrible out there.

Hi Guys, sorry about the radio silence. I am sorry, but I am writing this reply without reading any of the recent replies. I will read them, soon. I have been down, I haven't known how to get myself out of this rut. I don't want say depressed (not a macho thing) because I feel depression is on a whole other level. Just down, not feeling like doing much.

Anyway, since the last time I spoke here, we got my daughter discharged from the hospital and went away to a rural cottage. That went well - relatively speaking. Her incidents were down almost 80%, even though we were not doing any activities at all. I wanted to crash-course test where she was bored to see how she would react. Under those circumstances it was a huge reduction. We stayed for about 10/11 days, which I felt was a good amount of time to get a feel for how she would react.

So, I have been keen to move somewhere rural, or quite. But when it became serious my wife found a million and one reasons for us not to move. She has habit of doing this. I won't go into detail on that as we have huge differences in opinion on a lot of those big things - but I don't want air that publicly. Anyway, that's that. It wasn't for a lack of trying on my part.

The day we returned home, she tried to do something extreme. She went on a 3 hour crying and headbanging episode that ended up us taking her to A&E. Following that she had another 3/4 days stay in hospital. After her release CAMHS has been seeing her on an almost daily basis - which is still happening as this is a recent event. They seem to be taking her situation a bit more seriously.

She has been Quetipine since I last wrote here. I think she has been on it for about 3 weeks. Quetipine has helped reduce some of the symptoms, but it only has some benefit when she was increased 75mg a day - I had to request the increase, but it was on the plans anyway. By reduce I mean the screaming/crying episodes every night. They were a nighmare and they happened almost daily before. It is still happening, but less often and for a shorter periods. She had one tonight, just now, it lasted about 15-20 minutes and it was less severe. It was over a minor thing her mum said.

So, almost anything can be a trigger. It feels like we are still walking on egg shells - every single day. Living with her is stressful, but I try to remind myself that it must also be stressful for her. It's not always easy to have empathy when you are in the eye of the stortm. But I like take my wins wherever I can get them, so I am grateful it has reduced to some extent.

So, you could say we were getting a bit hopeful with Quetipine. However, I think maybe we got hopeful too quick. Quetipine is causing some very bad side effects with her. She feels dizzy regularly. She can't do her normal activities when she takes the meds. I am talking about physical activities like going to the park. She has very little energy. Her body aches, her musches ache and a few other things. I don't know if its causing any female related symptoms as she may not disclose those to me. I need to remind myself to ask her mum if she has disclosed anything.

What's even more worrying is her weight gain and appetite. Since she's been on Quetipine it feels like she can't stop eating. As much as we try and hide food and keep junk away, its difficult. This is a teenager who was about 8 stones, now probably weighs more than me. I am guessing she has gone above 11 or 12 stones now. I don't dare ask to weigh her for fear of an episode. It is begining to scare me. I am serious - this level weight gain cannot be good for anyone.

Anyway, I need your advise and guidance on a few things. I'll write back tomorrow about that. But I felt bad about doing a dissapearing act and I have been meaning to come back here, but my heads been burried in the sand, and I think I need to get myself out of it and connect with people again - hence the the update as everyone here has been very kind and helpful. Thank you.

Hi @namechange301 I am sorry to hear this. Get help as quickly as you can. In my opinion if you don't have the money (like most of us), then you need to get serious about the help and keep pushing them - not in a rude way. But be on top of your daughters mental health needs. Because no one will care as much as you do. Even though there some very good and well meaning people in the NHS/CAMHS, the system is overloaded, and your daughter and my daughter ends being a number - one of 100s of cases that they are dealing with.

Lastly, try and find find other mothers/parents in similar boat who you can connect with. If you are mum, it should be easier (in my opinion) - as mums tend to be more on the ball with these things, and it will give you a bit of a support network. I mean beyond forums like this. Forums like this are excellent, but it is still quite impersonal. You may need someone to talk to occasionally.

@RyanLondon hey thank you so much for that. Appreciate your reply.

For my part, I've done the following ;

Sourced counselling via NHS for her (hasn't helped and we've had two but not giving up on that)
Given DD access to all the online help and chat lines
On school counselling waiting lists (very long)
Badgered GP's and CAHMS but understand there's only so much they can do
Spoken in depth to school
Taken DD to a mental health wellbeing cafe for teens and encouraged her to attend
Looked into (and may have to find a way) specific private therapy
Done a variety of courses to help me understand this better and how to cope and handle certain situations
School put DD in some intervention classes
School referred DD to children services
Had a NHS based family coach with a few sessions online
Changed schools in year 9 when she was being bullied and came home every night in floods of tears and school weren't helping much. So reluctant to do that at the start of year 10 but realised DD mental health was more important as the cutting was at its worse around that time.
Encouraged but not forced outside school clubs so there are 2 and a helper at a 3rd which she enjoys.

I know what DD triggers are and they are the fact she can't seem to keep many friends and feels lonely. She's vulnerable as a result.

It is tough.

I'm glad you have updated. I'm sorry to hear your struggling. Do you have people you can talk to in real life.

Autism charities may be able to offer you and your wife counselling for yourselfs. Your dealing with a lot here.

I know nothing about that
Medication but the weight gains does seem a lot Can you ask for a review?

We are hear and listening.

Hi Op I but wanted to note two possibly related facts which stand out for me. Your daughter is on Fluoxetine and is experiencing suicidal behaviour and you see her mental deterioration as contemporaneous with mental health care. I was prescribed Fluoxetine for severe clinical depression as a young adult. I was on it for at least 8 years. I experienced intense suicidal ideation in the early years of my time on this drug. It was hell because the medicine became the poison. You can find research about this dangerous and masked effect of SSRIs in general and Fluoxetine in particular on young people.

Hoping this might help you! Sending support.

My DD actually got worse on fluoxteine.
We recently switched to sertraline and she seems to cope better.
Many people on the mental health board have had weight gain issues with quetiapine.
I think most anti psychotic medication have this issue.

My dd is 21 now dx with autism at just two. She had a breakdown/burnout at 14 caused by school largely because, despite being academically able, she couldn't cope with the demands of a mainstream school. It was a sensory nightmare, socially it was hell, the national curriculum was traumatising and she folds at the first sign of pressure so constant testing and the need to perform multiplied all the other difficulties.
She was out of school for two years but LA supplied a tutor and CAMHS came here fortnightly. She had psychiatrist psychologist and CPN input and started taking Sertraline which takes the edge off of her anxiety.
After two years she went to an independent specialist school, a therapeutic setting and thrived. The school had on site therapists, SALT and OT and built a curriculum according to an individual YP's needs. She left at 19 with a clutch of GCSEs and now at 21 she has an EOTAS programme so she has tutors, TA, a PA, SALT and OT who make provision at home and support her in getting out and accessing the local community.
Dd's sensory needs contribute greatly to her anxiety so the OT working on these aims to reduce dd's anxiety and the SALT works on her communication and social interaction which also reduces the anxiety.
Dd is still fragile, I suspect she probably always will be but with the team around her she is getting stronger and she enjoys the input she has a great deal.
Does dd have an EHCP? Have the LA been making educational provision whilst she hasn't been able to attend school?

Antiipsychotics like quetiapine suppress the hormone that makes you feel full so the person overeats because they don't know when to stop. Althpigh they all have this effect people react differently to them; my daughter put on a lot of weight with risperidon but nothing with quetiapine. The weight she gained with respieridon fell off very quickly once she stopped taking it.
The side effects when first taking resperidon were awful for her but they did disappear after about a month. She also had side effects when she stopped and had ti reduce very slowly over à période of about 4/5 months. She had minimal side effects when she started taking quetiapine and none when she came off.

@namechange301 My daughter has some similar issues to yours. You should be commeneded. You are really on top of things. Way better than I could ever be.

Regarding the "mental health wellbeing cafe for teens" can you explain what that is? I have been looking for a place where my daughter can connect with other teens with ASD or mental health issues. I have struggled to find anything. I may not belong to the right groups.

@HeBeaverandSheBeaver Thank you. I don't have anyone to talk to. Not just because of this, just in general. I am highly likely autistic myself. They saysome of it is genetic. It's something I have suspected and known on spme level for some years now. I am very good socially, when I choose to be. I generally prefer my own company. But my wife has people to talk to. But I don't connect with people much. Once you get older, and if you don't work for a anyone, you don't get to meet people anymore and your world shrinks. But it's not an issue.

Yes, weight gain is concern and I am raising it with her counsellor.

@Geppili I read similar info. She has been off Fluoxetine for about a month now. I know it cane take months for effectrs to wear off. There is a high probability you are right. Even if you are it's now too late and we have to deal withe consequences and work out the best way forward.

@DarkChocHolic You are right many of these mental health meds have the weight issue side effect. I wouldn't have been too worried if I could get her moving. A few years ago I was able to drag her to the gym occasionally. She wasn't one of those kids that was embarassed with being with her dad. I know most teens were, I was at that age. But now, she neither has the energy, and it also feels like she isn't in the mood and or wants to spend time with me. She doesn't want to spend time with anyone. If I could counter the weight gain through other measures it would be less worrying.

@hiredandsqueak I am very bad with text abreviations, so you have to tell me what dx is. Your message sounds really promising and inspirational. But I am strugglying to decipher some of the acronyms. I am sorry, I promise I am not that old :) - at least I don't think I am. I would like to ask you a lot of questions. But I need time to read your message properly. You have done really well by your daughter.

I just finished the EHCP tonight. I have been burying my head in the sand. Not happy with myself. However, it all falls on me. My wife cannot help with these things. So, I think I just been avoiding stuff. I don't know how else to explain it. Normally, I am a very active person. I have to be. I have been self employed 2 decades now. It forces you to motivate yourself to do stuff. Anyway, I am slowly pushing forward. But not a happy bunny.

@Roseau18 I know what you are saying is true. I hate the fact that we are in this state as a society where we have to depend on these pills to get our kids balanced. It feels like every other kid nowadays has something. I don;t want to go all tin foil hat - but something is not right!

@RyanLondon
I hope u get the time and headspace for yourself.
You are doing everything you can and more!
Self care is so important at this time and please take time out for you.
This is a marathon and your daughter needs you to be your very best for a long time.

@RyanLondon Sorry I forget that not everyone knows the acronyms. dx is diagnosis, CPN psychiatric nurse, LA Local Authority, YP young person, SALT speech therapy, OT occupational therapy, TA teaching assistant, PA personal assistant/ support worker, EOTAS education other than at school, HTH hope this helps.