Autistic nephew? Suicidal thoughts?!

[Kasejay]

Hi lovely mumsnetters,

Its my first time posting so apologies if im in the wrong place. Im posting on behalf of my sister who is desperate for some help.

My nephew has recently been referred to cahms with suspected autism(by school) He is 7 currently. He has for the past 2/3 years been struggling socially to make friends in and out of school. He didn't display any problems at nursery but once he moved to reception he has struggled massively to fit in. He is a very intelligent little boy but cannot follow social cues, he feels alot of the time that people don't want to be friends with him etc. In reality alot of kids find him quiet rude.For example, he won't play a game that everyone is playing like hide and seek if he wasnt the one to choose it. He will either kick of massively or sulk ( this can last for over an hour). Our children who are younger absolutely adore him, but over the past year or so he's become like that with them. We'll see him (support bubble) and he'll tell my little girl to leave him alone as soon as he sees her, he never used to be like this. Its so upsetting to see as she loves him so much. I dont mean to ramble just trying to paint a picture. Its gotten to the stage that he doesn't want to be near anyone anymore, he wont play ANYTHING atall. No lego, no drawing, no parks nothing. He simply will refuse to do anything that isn't sitting in his room playing a switch. Which he clearly cant do all day everyday!

So this afternoon he came back from school, very quiet. After a talk with his mum he said to her he wants to kill himself. Noone loves him. He has no friends and what's the point. She is absolutely heartbroken. She has booked a gps appointment tomorrow, but shes just in pieces. He's still so little, having thoughts like that its soul distroying.

His behaviour over the past year is getting totally out of hand, she just can't cope. She is worried sick about him (we all are) but the wait to see them is nearly 2 years.

I was hoping if anyone had any advice on how to deal with it all? Maybe some helpful links she can look at to help him somehow? I've never had mental health problems but could this be depression? Were just so lost. The support from the school is ok. But they cant help at home. When he has range fits he can hurt himself, people around him, you can see each time its like he's losing abit more of himself. Anyone any advice please?

So sorry to hear that your friend is going through this. The NAS has some useful information: www.autism.org.uk/advice-and-guidance/topics/mental-health/suicide/parents

Oh my heart goes out to you and your sister.

Is your Nephew currently actually being seen at CAMHS?

So sorry to hear about your nephew. You must all be worried sick. Is there any way you could consider going private to get him seen sooner? It’s so sad that mental health provision is so underfunded but yet so desperately needed. Best of luck! X

Sorry, just re-read your post and you say that the wait to see CAMHS is over 2 years.

I had a DS in junior school that tried to hang himself for exactly the same reasons that your DN has described how he feels.

I took him to the GP and she was FANTASTIC. She rang CAMHS and stayed on the phone line, holding up all the rest of the patients until she got a definite appointment for him.

Now I am not saying that will happen in his case but your Sister needs to emphasise to the GP that this is something that is terrifying her and she needs support NOW.

School can be an extremely stressful place for autistic children even just the general noise and fitting in with others etc. We went through similar with my six year old at the time saying he wanted to die and he tried to throw himself out of window and down stairs. My gp tried to refer to both cahms and paediatrician but both turned down referrals saying it was part of previously diagnosed autism. He also started having meltdowns and hitting out at school and school started excluding him which made the wanting to die worse. To cut a long story short eventually I got him an ehcp and moved him to a more suitable setting but it was 3 and a half years of absolute hell. He still has ups and downs but nothing like it was. I’d definately advise of going down the ehcp assessment route. Even if his behaviour seems ok at school he may be masking which takes a lot out of him and prob why he doesn’t want to do anything else outside of school as he’s so burnt out poor boy

You need to contact the CAHMS crisis team. Unfortunately there is a waiting list for normal CAHMS services but the crisis team should work with your sister fir the next few days xx

I know this is left field, and doesn’t tackle the immediate issues perhaps, but my son with autism also struggles, so I’m just saying something you might not think of that’s helped us...
We have a local equine therapy centre that does various groups and classes for various young people, and through this kids can find a way to make friends without the usual social pressures. (It’s open during lockdown). They all have something to be focusing on and it gives a reason to get out and be somewhere with other people. Just a thought.
Also, not to worry you, but we got absolutely no help from CAHMs. We ended up paying privately for a therapist at one point, but by far the most helpful thing for us has been charities and groups that provide supported social settings or clubs. My son is so much happier when his (very limited) social needs are met. One or two evenings out a week and he feels he has ‘friends’.
Autism can be soul destroying. And it affects kids in so many different ways. This pandemic has taken away so much structure and ‘casual’ socialising, which I think is often key to mental health. I hope your family find a way through.

She needs to not hold back at the GP's IMO x

Snergaruffpod- I’m not saying don’t try but as far as I’m aware cahms crisis team will only get involved if there’s an actual suicide attempt and not ‘just’ a threat, I’m not saying this is right just setting expectations. One of the things I found hardest was asking for help and expecting it to be given and then being turned down or fobbed off to another agency to be fobbed off by then. Looking back the best support I found was through local parents groups, I’d suggest seeing if there are any autism groups about, the parents will know the system of the local area and where you are most likely to get help

Papyrus are a really useful organisation for help with things like this. I would skip the GP and see if her area has a number for a 'single point of access' for children's mental health services. They will assess and get you some help.

It really depends on local camhs services re waiting times. Has he got any in school support - there are teams that provide this in some places. Services vary so massively. Once referred if she is ever genuinely concerned for his safety take him to A&E and liaison will assess and then camhs will do a 7 day follow up. Obviously only if warranted. It’s very tough

Thank you so much everyone for your kind replies.
Im not really sure how to reply individually, its absolutely heartbreaking how many children are in similar situations. Im going to pass everything onto my sister, im just waiting to see how the gp appointment goes, she's there currently. I'll have a look at our local support groups, thank you. As for the echp assessment, is that something that she can self refer him for? Or is it down to the school? I just really hope we can help him, its so so heartbreaking. Thank you all for taking your time to reply. We really appreciate it

Yes she can put in a request to la herself for ehcp, look at ipsea website there is a template letter

It sounds more like depression than autism tbh. Autistics are more prone to depression (not surprising, the world is just harder for us). The gp should be helpful, if not, if she can afford it, a private councellor. Autism support won't really help with the depression anyway, even if one causes the other they will need treating independently. Otherwise when he's out of the setting where he gets Autism support, he won't have the skills/support to handle his mental health.
It's awful but he's lucky to have people round him trying to help

I really feel for your sister and nephew. I have been through similar myself with my son.
We have had problems with my son right through primary school so far. School were constantly asking me in for a chat and expressed concerns of adhd/autism. Behaviour wise fine, mainly social stuff. We had him assessed. Had cahms involvement. Was observed in school. They concluded that it is all anxiety based. I do agree with this in part because he is anxious, but there is more to it as he's never fitted in properly and has always struggled socially. After this they discharged us. That was 2 years ago. Never heard from them again yet all same problems still there.
I contacted a mental health charity and they provided me with 10 weeks of counselling for him which he attended. He got absolutely nothing out of it becauase 1.they won't speak to the parents so your not able to tell them what the problem is 2. It's confidential so they wouldn't tell me what was discussed 3. As soon as my son left the session he completely forgot everything.
Then covid came along. That pushed his anxiety and negative thoughts way up as he'd just made friends and then couldnt see them due to lockdowns. He became reclusive, withdrawn, and agoraphobic. He then developed "hysterical throat" where he felt there was something stuck. He stopped eating and couldn't even swallow saliva. It was a terrible few months. He then told some friends on the xbox that he wanted to kill himself and one of the parents contacted me. It was completely heartbreaking. Now he's back in school he is much, much better but the slightest thing sets him off and I am always so so worried about his future. I don't know how he will cope with the world when he's an adult. Anyway, I digress. My main point I wanted to make is that there is hardly any help for mental health. There are therapists, cahms and mental health hospitals etc but at the end of the day they can't see inside your mind and there isn't alot anyone can do apart from talking and medication. Mental health is a horrible, horrible thing and when it affects a child it is just devastating. Good luck with everything. My son is 9

I feel you. My youngest sibling has been saying these things since he was a similar age, he is also autistic. It's awful.

It sounds like an addiction/ dependency on his device. It's not unusual for people with additional needs to feel very isolated as they are sensitive to being "different". Unfortunately a device is temporary fun but is also stopping him 'practice' social skills. I realise he might always struggle with complex social situations but it is possible to learn to handle a certain amount before becoming overwhelmed. Obviously it's difficult to stop someone doing something they enjoy when it seems hard for them to do other things but it might be I.portant to put some restrictions on his device time, and get his game time more interactive. It can help some feel less isolated - so devices aren't inherently bad, just perhaps important to use that to help him find some people to relate to. Good luck to you and yours. It's heart breaking to hear a child in this situation.

Hi everyone,

Thank you all again for replying back. I am so sorry to hear how many of you have been in a similar situation. Its devastating. I know this may seem quiet stupid but i just did not realise how bad mental health can be in children. I suppose what's most shocking is the lack of support. It seems its so overlooked. I realise it varies in different areas. But it just doesn't seem enough.

She went to the GP today. They have referred him for a mental health assessment. Although she was grateful that something was being done she was also so upset by it all, she didn't feel any support for him whatsoever. She said she had to convince the gp to do the referal.

She doesn't have to means to go through with this privately. Although she works she is also a single parent to 3. Their dad appears a few times a year but certainly would not contribute to anything of the likes. He wouldn't even buy him school shoes! Tbh its gotten to the stage were none of them want to see him anymore. ( my nephew being the youngest actually decided that for himself first before the other two). We have offered to pay for any treatment he may need. However, she said she will wait to see how the referals from school and gp go. Tbh she hates asking/borrowing money so i think its more the burden she thinks is being put on us. This is definitely not the case. We are by no means well of but we could afford to help them and put him through the treatment. No reassuring has so far changed her mind. But well see..

As for the gaming its a very tough one. He is allowed on it for an hour after school and around three at the weekend. He is so emotionally invested in it. Most days there's a huge meltdown having to come off it or if he hears the word no. He can either get very aggressive or will sit in sorrow for hours. He tells her that his virtual world is where his friends are. That people aren't mean to him and actually lile him. That shes trying to take away the only friends hes got. So although she does stick to her guns she also feels so sorry for him that he feels like his existence is only valued in this virtual world. Its so sad and so so hard. He has been gaming for about 6 months now, so i dont think this is where the issues stem from as they were there before. But maybe its making things worse. I just don't know. We would also like any advice with this? How do you deal with them when they have a massive aggressive outburst? Are you boundaries stricter when it comes to them?

This is again were the rest of the trouble is. He will not do anything. He is happier to sit in a dark room staring at the wall then to do anything atall. We used to go on bikes rides, id often take him out myself going to parks, soft plays, swimming etc. His mum is a wonderful dancer/singer they would make up routines and sign and dance for hours. He wont play lego, he wont read a book, he wont draw, wont bake. Absolutely nothing. So to those of you who have had children with similar issues, what do you do? What activities do they like? How do you manage to get them to do them if they're not essentially intrested?

Also, i feel like im struggling to help my sister. I can see she is so desperate and down. What did you find useful in regards to support being a parent of the child?

We used to take him for sleepovers but that can't happen anymore. He can be really horrible to our children sometimes and it's resulted in alot of upset the last few times. Tbh he'd probably refuse to stay now anyway. My daughter came up to me last week tears in her eyes (4) showing me a picture she drew for him asking me if he will love her now and will stop being mean. My heart shattered. She adores him, he is her favourite person in the world. Since she was born she took such a shine to him. Its so upsetting. She thinks he doesn't love her and its her fault. I obviously explained its not and reassured her, so far shes okay but for how long? We as an extended family are all really close and i can see him putting a huge wedge between himself and the rest of the children. Its so horrible to watch. I dont know how to help? How do i mend their relationship? What do i say to my children if it doesnt get any better? So lost.

Im sorry i know ive rumbled on. I just dont have anyone to talk to about this. Really appreciate any replies! Thank you

Just to add a litte positive she has found a local support group and will be attending her first session next week. Really hope it helps. Also, thank you for pointing out how to go about with the care plan shes going to fill it out, hopefully that will also help!

Going through very similar with my 8 year old autistic son. Luckily we have an amazing consultant that basically kicked school up the arse for not doing enough to support him. Between the gp, consultant and myself we've got him a CAMHS referral. Not sure on the waiting times, hopefully soon. We've started a gratitude journal we do together each night, loads of sensory/ fidget toys, laminated cards for school (made by myself) he can show the teacher as when he has meltdowns he can't speak, so he can show angry, anxious etc. Also cards saying 'please explain this instruction to me again, I don't understand ' I'm doing everything in my power to start positively every day, breathing exercises, or singing as when he panics he feels like he can't breathe, but he's very logical so he sings at the top of his voice with me so understands that if he's singing or talking he IS breathing. Loads of love to you guys, it's so so draining, and unlike school I don't have the option to chuck him in the corridor if he's upset 😡

If he really likes the gaming I’d be inclined not to take it away especially if it’s helping keep him calm and regulate he may need that after a difficult day/ week at school. If the gaming was winding him up and he was getting annoyed then it’s different. Can she perhaps take an interest in the gaming, sit with him when he’s playing and try and engage conversation about it. Depending on the game maybe there are some books, toys or lego linked to it thst he may take an interest in. There’s a blogger on Facebook called faith mummy who has two autistic children and I remember she did an excellent article on screen time for autistic children and it not being the bad thing that people tend to think. Tell her not to be disappointed if she is initially turned down for the ehcp, it’s very common to be turned down, I was, 90% win at appeal. You don’t really realise this whole other world until your in it, before I just assumed that children thst needed it got the support but it’s such a fight for everything, thsts why support groups with other parents are so important as they are only other ones who understand

This is awful. It is very tough if he is intelligent and a dictator.
Play therapy is probably an answer- I've been through it my DS is still a dictator with no emotional regulation he gets in a state upset but he has improved with social stories, recognising others feelings. It is sad DS finally has a friend who he is kind too.

My ds did play therapy as well and that helped although didn’t solve everything as I don’t think anything ever will. It was about £40 for a 40 min session tho

As tell her to keep a daily diary, I didn’t initially and it would have been useful later on, nas education rights helpline advised me to do.

Also if his behaviour is becoming challenging and violent it is worth looking at Yvonne newbolds webpage and fb group. It’s really useful as traditional parenting, rewards, punishments etc can often not work with a certain type of child so coming down harder on them actually makes things worse and taking away demands actually reduces the anxiety which is often what’s fueling the meltdowns. It’s really difficult as everything seems so alien to the way we are all told is the right way to parent but traditional methods just make some sen children worse