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?

Something I just remembered. The Cerbera guide to applying for DLA. Last I checked, a diagnosis isn't necessary to apply for DLA, because it's based on how the person is affected, and what their needs are.

I downloaded and printed a copy some years ago, and have found it very useful to refer to.

cerebra.org.uk/download/disability-living-allowance-dla-guide/

Cerbera can be a very useful website for anyone with a brain condition, but especially useful for those whose children appear to present with ASD traits, but lack a formal diagnosis.

She'll get there it is hard but every milestone gives you a boost.

@Morph2lcfc

It wasn’t me who posted about the knife to throat it was mmelaraque, I’m just a parent

"I'm just a parent."

I'm a parent, too.

Thank you emerald

Oh right sorry must of gotten confused! I will hopefully get to grips with mumsnet soon! You've all been through so much but have been so so helpful, thank you. My sister is also so thankful for the support!

He could be experiencing autistic burnout; basically when the nervous system is so throughly overwhelmed just from the stress of living and sensory overload. It can mimic depression and has similarities but is a different condition.

He might be unable to cope with activities and social interaction (even with cousins) right now because of it. What you said about him sitting in a dark room staring at the wall rang a bell for me. Whilst from the outside this looks bad, it might be what he needs for his system to calm down. Anything more, even stuff that 'should' be pleasurable is just adding extra stress.

Autistic burnout (if that's what it is) is a temporary state but rest and reducing stress is really the only way out of it. Adding more stress by trying to chivvy him into activities is only adding to the burnout.

I'm autistic myself so this is coming from my own experience and trying to imagine where he might be at.

www.autism.org.uk/advice-and-guidance/topics/mental-health/autistic-fatigue/parents

When he has range fits he can hurt himself, people around him, you can see each time its like he's losing a bit more of himself. Anyone any advice please?

Those fits sound like the OPD I was talking about. They look an awful lot like a grand mal, yes? Sometimes, they just disassociate, and are so far gone, all you can do is keep everyone (including the person suffering the OPD) safe.

I've seen a few (lots... ) of those OPD/fits.

The sort you appear to be describing are a horrible thing to witness, and must be worse for the person suffering them, especially with the apparent memory loss.
They get angry/upset about something, and that leads (almost faster than anyone else can react) to OPD/meltdown. At this point, there's raging, throwing whatever is close to hand. Then comes the seizure. They look glass-eyed, and as if they're struggling to breathe. They might grasp at their throat, and smack their lips, as if struggling to breathe.... then they're gone with the wraiths. When they come back, they have no memory of the OPD or the incident that triggered it....

Okay, the above is something I've seen regularly. and is described almost exactly the same way by Paul Broks (Into the Silent land) It's a classic epilepsy behaviour, and one of the ways OPD presents in autism:

"They were shadowy figures with a pungent smell of elecricity, a sensed presence, but no one there. Odd to identify the smell of a seizure with electricity, which is odourless, but apt for an electrical storm in the brain."

"The ethereal visitors are part of the epileptic aura, a state on altered awareness that serves to forewarn of an approaching seizure. it also has another, more visceral, feature. Naomi says it feels like a sparrow fluttering its wings in the pit of her stomach. The bird ascends to her throat, becomes trapped, and struggles to escape. up to this point, under the gathering gloom of the brainstorm, in the company of the empty shadows and the sparrow, she is fully conscious and can articulate her experiences. Then the storm breaks and she is swept beyond reflection. her eyes become glazed and empty. she tugs at her clothes, smacks her lips, and keeps wiping her nose with the back of her hand. I've seen her in this state. She has gone with the wraiths. They have left an automaton, acting out a purposeless, robotic routine." (p26 of "Into the Silent lands)

www.amazon.co.uk/Into-Silent-Land-Travels-Neuropsychology/dp/1843540347/ref=sr_1_1?dchild=1&keywords=paul+brok+into+the+silent+land&tag=mumsnetforu03-21&qid=1616684167&sr=8-1

Does that sound like a reasonable description of the sort of rage/meltdown your nephew suffers?

Thank you bitheby, you might be right. He does seem totally burnt out. Would you say letting him rest, leaving the structure of the day up to him would be helpful? If you experienced this before what helped you, did you parents do things to help? Does it end? How did you feel experiencing this burn out? I think we all as a family need to gain ALOT more knowledge about it all, nothing weve tried has helped so something needs to change. My sister will do anything atall to help him. She's just so worried about every decision she makes so it doesnt affect him negatively as i suppose all children with mental health suffer differently. Do you think there is anything i can do to help the cousins dinamic atall? I dont and wont push it on him, but its so sad to watch. Im not quiet sure how to carry on explain this to my daughter either. Maybe with time if he gets the right help it might get better, maybe it never will i just dont know.. Did you struggle with relationships with you siblings/cousins etc?

@bitheby

He could be experiencing autistic burnout; basically when the nervous system is so throughly overwhelmed just from the stress of living and sensory overload. It can mimic depression and has similarities but is a different condition.

He might be unable to cope with activities and social interaction (even with cousins) right now because of it. What you said about him sitting in a dark room staring at the wall rang a bell for me. Whilst from the outside this looks bad, it might be what he needs for his system to calm down. Anything more, even stuff that 'should' be pleasurable is just adding extra stress.

Autistic burnout (if that's what it is) is a temporary state but rest and reducing stress is really the only way out of it. Adding more stress by trying to chivvy him into activities is only adding to the burnout.

I'm autistic myself so this is coming from my own experience and trying to imagine where he might be at.

This, precisely. The last thing any autistic needs is to be cajoled/pushed into *more activities/things they're not interested in.

I don't think I experienced burnout as a child but I certainly did as an adult. I wasn't diagnosed until I was 40 (quite common in women of my generation).

The closest I came was to the public meltdowns I had around exam time when I was struggling with exam stress on top of all my usual curricular activities, which no-one told me I could drop during the exam period and I was trying to juggle all of it and completely failing.

The energy accounting mentioned in the NAS link I posted is really useful. It makes more sense to think of activities in terms of how much energy they will deplete rather than X activity is a fun thing and assuming that therefore it will be positive. Even fun things deplete limited (social) energy.

I had virtually no friends and did nothing outside school except watch TV and solitary pursuits like horse riding and gaming as a teenager.

As an adult, my worst period of burnout led to having 6 months off work. I probably wasn't really ready to go back but my sick pay ran out after that.

Oh and when I first started work and was still taking family holidays with my parents and younger siblings, I would spend the first 3 or 4 days sleeping around 16 hours a day - probably because I was completely exhausted from pretending to be normal and coping with a full time job (sorry this answer is all over the place, am trying to answer your questions but it's hard to patch together personal memories into something relevant and coherent to a 7 year old).

Yeah push the relationships thing waaay down the agenda. Plenty of time for that but it'll only work when he is not so completely overwhelmed. Pushing it is actively counterproductive if he is not coping with the basics in his life at the moment. Ditto new clubs etc. My son took up a new hobby last year, sadly just before lockdown. I'd been following the club's website for about 5 years. I always thought he'd love it, but I needed to wait until I thought he was ready and had the headspace. Your nephew doesn't have the headspace for many new things right now.

MmeLaraque,

The meltdowns are instant as you said, its like his not in his body. He looks right through you. She has to remove anything near him and everyone has to leave him. It takes a while but then he will start breathing heavily and he comes back bit by bit. She can then start talking to him and calming him. Its awful. Ive only seen it a few times so maybe the other things you mentioned are also present. I will be forwarding it all to her. Thank you

Thank you both thats really helpful, i shall be letting my sister know. I feel terrible now tbh because were all pretty close and because of covid we are her only real support ive been trying to help in my own way buying things to intrest him, trying to get him out and about. I can see that I've now become part of the problem. I just genuinely thought it would help, some new intrests, something that might just make him that little bit happier. But as youve said its counterproductive. We've all been making it so much worse for him We will be taking it all in and trying a different route definitely. Do you think if we let him structure his days himself it might benefit him? For example if he just wants to sleep till midday and then game for a few hours and just wants to be alone that would be okay? My sister is just really worried about making it worse. She hates him spending so much time on his own, she misses him and feels bad for him. She desperately wants him to know she adores him. But she has realised now that might be what he needs and is willing to do anything

Did you watch the chasers road trip? Ann one of the chasers spoke about bring autistic and one time they were in a bar and she had to take herself off and go on the tablet for abit. She said sometimes she needs people breaks she she goes on the tablet and does abit of online quizzing to relax her

@Kasejay

Thank you both thats really helpful, i shall be letting my sister know. I feel terrible now tbh because were all pretty close and because of covid we are her only real support ive been trying to help in my own way buying things to intrest him, trying to get him out and about. I can see that I've now become part of the problem. I just genuinely thought it would help, some new intrests, something that might just make him that little bit happier. But as youve said its counterproductive. We've all been making it so much worse for him We will be taking it all in and trying a different route definitely. Do you think if we let him structure his days himself it might benefit him? For example if he just wants to sleep till midday and then game for a few hours and just wants to be alone that would be okay? My sister is just really worried about making it worse. She hates him spending so much time on his own, she misses him and feels bad for him. She desperately wants him to know she adores him. But she has realised now that might be what he needs and is willing to do anything

Just remember that the state he is in right now is most probably temporary (obviously none of us know without knowing him but just summising from what you've said) and so don't fall into the trap of thinking that "this is how he is". You could try asking him. He's so little and I'm not a parent so I wonder whether leaving it all to him at his age would be too much? Kids need routine and structure and usually we accept that adults know best but actually if the adults are all neurotypical then perhaps they don't know best. It doesn't automatically follow that he does know what's best.

Might be better to work together in as low pressured way as possible. Ask him what helps him feel calm and safe. If he doesn't know (identifying and articulating feelings is really difficult for autistic people) then stepping through it gradually might work.

@Kasejay

MmeLaraque,

The meltdowns are instant as you said, its like his not in his body. He looks right through you. She has to remove anything near him and everyone has to leave him. It takes a while but then he will start breathing heavily and he comes back bit by bit. She can then start talking to him and calming him. Its awful. Ive only seen it a few times so maybe the other things you mentioned are also present. I will be forwarding it all to her. Thank you

OKay. Have a look at this. Your sister will know just how close this/the other information is to what her/your nephew/their family are experiencing.

Otherwise, it is absolutely worth asking the kid what They want/what they think might help. Autistics aren't always great at expressing themselves, but that doesn't mean it's not a good idea to ask.

www.autism.org.uk/advice-and-guidance/topics/behaviour/meltdowns/all-audiences