Struggling to get over DS saying he wants to die

[AriellaBella]

DS (10) has ASD and sometimes has violent and angry meltdowns. He had 2 in the space of a week recently and during one (after trashing his room and smashing everything possible) he sobbed for an hour that he wanted to die. On repeat "just let me die, please kill me".

I haven't been able to get over it. It was probably about 3 weeks ago now, but I feel like I'm on shutdown. I don't know how to get over the image of him being that upset and hearing those words.

My biggest fear is that one day, when he is older, he will actually kill himself when he is in a mood like this; completely inconsolable, unable to see any good in the world or anything positive, just full of sadness and pain.

At the same time myself and my partner of 2 years are going for IVF. We had a failed round last year and have 1 frozen embryo. I keep wondering if I am mad to be considering bringing another child into the world when I have one that doesn't want to be here.

I know that withdrawing from people is to try and stop myself from being hurt and is somewhat self protective but I don't know how to reverse this feeling of shutting down and wanting the whole world to go away.

I'm already having counselling but that hasn't helped with this feeling.

Anyone?

I feel for you op! I am not sure that bringing another child into the mix will help things though. Does he like your new partner? Does he still see his dad?

Oh OP this is hard. Not much advice, other than to say my friends son went through similar last year (ASD symptoms but not diagnosed). Said the same things.

She sought a CAHMS referral for him but then the behaviours stopped as soon as they had arrived. He's much happier now. Similar age to your DS. This little boy said it on multiple occasions.

Re another baby, I'd worry about your own well being with a child with additional needs and a newborn. Depends on how your support structure is though.

Just seen you've only been with partner two years, in which case I'd say much too soon to bring another baby into your family, your DS must still be adapting to partner?

DS spends half of the time with his Dad. Yes he does like my new partner. I am so torn between continuing with the IVF (I am 40 so don't feel like I've got forever in terms of time) and stopping.

@Grobagsforever thanks thats helpful to know that it might just resolve by itself. He isn't miserable all the time but when he is he is so sad.

I think that this is fairly common with ASD sadly.

My 13 year old son expresses these thoughts quite frequently. He is now taking sertraline for depression and anxiety which helps to a degree.

I would try to get some help for your son's mental health if possible.

I , too, have worries for my son's future. I try to get to the bottom of what is causing the thoughts, it could be something at school for example that could be fixed.

Thanks for your reply @taratill. We are in an area where he wouldn't meet the threshold for CAMHS and community paeds who diagnosed him took him off the books as soon as we were given the diagnosis despite knowing he would self harm by hitting his head against walls. I don't know where else to go with it.

I wish your son all the best. Does he have the meds from the GP or does he see CAMHS?

I am sorry you are going through this. My DD is 11 and also has ASD and has been saying this for some time (i.e. years). I remember feeling the same the first time and it is still incredibly difficult to hear, and I worry a lot about her future. I live alongside this pain and fear, but it doesn't overwhelm me like it used to.

I would look at getting him some help if it persists. If you can afford private, then go private. CAMHS takes forever, even in urgent cases. We saw a private psychiatrist and DD now has sertraline (only just started 10 days ago so still waiting for it to work!).

However, one thing to reassure you - all the professionals agree that my DD does not really want to kill herself. She just wants the bad things to stop and this is how she expresses it.

Also just seen your post above - we saw a private psychiatrist, who prescribed medication the day we saw her. She is doing a shared care contract with tour GP so that he can prescribe the medication but she has the overall responsibility for it.

@AriellaBella

if your son is expressing a wish to die then I would suggest you take him to your GP, it is disgraceful that children have mental health issues that are not supported by virtue of the fact that they are autistic, take it up with your CCG / MP if you do not get support.
I had to do that for my son.

He is under CAMHS and gets private psychology and OT through EHCP,.

I really feel for you, OP. My daughter has ASD and frequently said she wanted to die during her teenage years. Now - at 20 - she has at last decided she can carry on. But it is tough to hear. One technique I was advised to use is to set 'goalposts' eg you can't go yet because you need to be here for our holiday/your friend's birthday/Grandma's visit - whatever you can think of. Then continually extend. One thing to bear in mind with your IVF - there is a strong chance another child will also have ASD - can you cope with this?

Oh, and CAMHS? - Don't get me started! Maybe try your local National Autistic Society branch for a support group or advice.

Hi,
Last year DS (9 at the time) was sent by his MIND counsellor to A&E because he too had expressed wishes to die and had planned how he would do it. If you ever genuinely feel like he's capable of hurting himself or if he doesn't feel safe in himself then take to A&E for an emergency psyche assessment.
Long term though is there a branch of MIND in your area? I got nowhere with GP but I found a Youth in Mind drop in session and went along and they put in place some one to one support sessions which I believe really did help. DS has ASD too, I do hope that will be the last he ever feels like that but it does seem to quite common amongst children on the spectrum to also suffer with MH.

I have two children with ASD.
(both were IVF)
I would never want to 'send them back' but...
I had NO IDEA how hard it would be

Your existing child needs you to keep functioning well for him.
do you have enough resources to add IVF (for me, it was gruelling) and a preganancy and a newborn / toddler (who may have their own issues, who knows) into that mix?

If so, go for it. If you are doubtful, then don't.
You have to put (and keep) your oxygen mask on first.

That must be so upsetting. Maybe counseling for both of you and discuss with him ways to cope with feeling overwhelmed? And how he would cope with a baby brother or sister? On a personal note I have an almost three month old and a ten year old and am very tired after being up most of the night with fever and pain from mastitis. I said to my son I really need a rest please don’t bother me for at least an hour and of course after I’d just gone to sleep he barged in about a snack. I yelled and laid the guilt on and now am feeling bad because he can be sensitive. I’m going to go make things better with him now because I hate the thought of anything ever happening to him. Just take things one step at a time.

I am so sad for you and your son op. I have a 7 year old with severe autism (he attends complex needs school etc) and I can only imagine how upsetting this is. Personally I wouldn’t bring another child into the mix - you have enough on your plate as it is and your existing child and the new child will be fighting for your attention. Plus, on a very basic level the noise of a newborn will be very difficult for a child with asd to cope with especially when they are already so on edge.

Definitely go back to your GP and demand extra support. What kind of support does he have at school? Ehcp? Is he happy at school? I am wondering what is going on in terms of a wider picture to make him so unhappy.

I'd get him to the GP and have it, at the very least, recorded that he's experiencing these feelings.

When my son was 8 I was worried about his MH. I went to the GP to ask for help but also to get it recorded. I didn't want him going off the rails as a teenager and then being fobbed off with it being 'normal teenage' behaviour when I knew it wouldn't be.
Very glad I did as, when he was a teenager, he did go off the rails as was diagnosed with biological depression. It was no surprise. Sadly, CAMHS were useless and we ended up going private (for which I'm aware was a very fortunate position to be in to be able to afford it).

Op my son is diagnosed ADHD, ODD and awaiting ASC. I could cope with him until the age of 7 when I only had a full time job and life was business as usual. He had some help from camhs and was settled at school and with a childminder - we had a great relationship until then.

We bought a house in a new area and two weeks before relocating my husband and I were blessed with another child (now 2) but obvs this meant I couldn't give my son all the attn he demands. It's been downhill since then and the impact this has had on my own MH is awful. Mostly from having to be a sahm as I couldn't return to work - this isn't what I wanted for myself.

I have to take things day by day otherwise I don't think I'd get through it. I feel like the shittest parent alive because I have to squash this resentment daily. I don't feel that I'm meeting the needs of either child although everyone around me would tell you otherwise. That's just how I feel.

My daughter was a long awaited surprise that we never thought we'd have... it also took years to have my son. I feel so much guilt every day that I wanted my children so badly and yet can't cope... or at least feel like I can't.

I struggle with coming at the bottom of the list and I don't recognise myself anymore. My DH also has ADHD and I fee their diagnoses and the demands of a toddler have taken over everything.

Life is hard and I hate feeling this way but it's also my reality

@Sassanacs I am so sorry to read your post. Do you get much support for yourself? I really resonate with a lot of your post and how hard it is.

I have another son who is 8 and he unfortunately feels pushed out sometimes when I am dealing with DS1 having a meltdown. I don't think I had really considered what it would be like to add a newborn into the mix and how difficult (impossible) it would be to meet everyone's needs.

Thanks for all the suggestions of talking to the GP and seeking private support. When going to the GP would I need to take DS1 along or just go by myself and tell them about the situation?

@Fairylea he doesn't get support at school and doesn't have an EHCP (our head said he would be unlikely to get one and judging by a friend who has a son with ASD who really struggles a lot more than mine and has had to take legal advice as even they wouldn't be considered for an EHCP I suspect the head is right). He is due to go to secondary in September and I am already slightly dreading it.

@MsGee However, one thing to reassure you - all the professionals agree that my DD does not really want to kill herself. She just wants the bad things to stop and this is how she expresses it

Thank you for this. In my more rational moments I am able to believe this - he is just so sad at the time that I understand he just wants it to end and the only way he can think that can happen is for him to die, I can understand the logic behind it, but it's terrifying wondering if in the future he might actually try.

my dd said this several times through year 6. She isn't diagnosed, but she does have a lot of asd tendencies.

She has very extreme emotions.
It was very hard to hear, but I realised what she was actually saying is - I need you to know how bad this feels right now, and I want it to stop.
For her, it was all around friendships, she has poor social skills. We used a mixture of reassurance, and building up in other ways.
18 months on, the social situation is better, but when she gets stressed we get meltdowns, and recently she said it again.

I have understood from health professionals that the key difference is planning. As soon as you see that they have actually planned how to, then you need to escalate to A&E etc

Ariella, in her calm moments she has said she does not want to die, she just feels like there is no way out. Weirdly enough, she is also terrified of dying at a young age. One thing that sometimes helps has been for me to talk to her when she is calm, and to tell her that I will do everything I can to keep her safe - then when she says she wants to kill herself, I remind her that my job is to keep her safe. I also have a list of empathy phrases to use. At the start I literally learned them verbatim so I said the right thing, it does get easier. Best response is empathy - don't panic, don't fix.

In terms of talking to GP, I had an initial appointment (alone) with a GP who then makes a referral to CAMHS. Different areas have a different process. We were referred urgently in October and so far have had a risk assessment call (which is why we went private in the end). However, if you are looking for a psychiatrist even private ones may have a waiting list (we waited a month).

When things were bad in primary I used to give her a day off (and at one point negotiated a reduced timetable) - which helped. It showed her I understood the cry for help and that I was trying to reduce the anxiety.

CAMHS also gave us advice on safety measures. DD had a specific plan for killing herself - our windows now have special adjustments so that they cannot open very much, and I can lock down the house in about 5 seconds. This is rarely needed now, but it did give me some reassurance at the time and stopped some fraught situations of her running from window to window to jump out. They also recognised she had PDA, so we now focus on reducing demands.

Try to do what you can this day, this week. Try not to terrify yourself thinking about the future - I know it is hard but I have learned to live one day at a time. In my heart I am terrified of DD killing herself - having already lost a family member to suicide I know that it is a possibility. But it won't happen today, so I leave the thought at the side for now.

@MsGee thanks for that really helpful post and to try to focus on each day at a time rather than something way in the future that may never happen. I feel so helpless when he is like this because there is nothing I can do or say to make it any better so I just sit with him whilst he cries and says he wants to die. Eventually he feels better but I just left feeling so broken.

Ariella, sitting with him is not doing nothing. It is making him feel loved, and providing a place of safety and security when he feels at his lowest. Be glad he is telling you his worst thought and fears and allowing you to provide comfort and care.

It feels like doing nothing though. I feel so helpless that I can't make it better. I know that there is value in just sitting in the dark with him until the darkness passes but my goodness it's hard.