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?

I dont wish to put the blame on covid but there are serious restrictions to his life right now that are harder for children with Autism and the pandemic will in part be contributing to his poor mental health.

I know your sister can't afford a diagnosis but could she afford a few sessions with an educational psychologist for him? Around £100 a session - he might find them very beneficial.

I have a child a similar age and I admit he gets more screemtime than your nephew purely because its his "safe space" right now. He could haggle some more time by doing engagement activities. You can have an extra hour if we build this jigsaw first, go for a walk.

Building more structure and written routine into his life might make him more comfortable, lean in and indulge any sensory needs he has, eg buy ear defenders if he's noise avoidant.

Your sister might benefit from the book The Whole Brain Child.

I'd advise your Dsis to cut the focus on gaming, yes he has restricted times but if it is all he thinks about it is in his head all the time.
I use a visual timetable with egg timer, include going on walks etc.
Gaming can be a curse for obsessive DC. It is all about routine and boundaries it is hard to do but outsiders won't have the compassion family has, it is best he learns at home.
It is a daily battle grinding your DC.

Gaming addiction is very real for DC unfortunately DC on the spectrum can be completely sucked in.

Poor love. You have had lots of more knowledgeable advice already. I would just add this: don't put all your eggs in the basket of diagnosis. It helps but it doesn't in itself open many doors that your sister can't shove open with a bit of force now. Glad to hear your sister is reaching out for other help.

Also I can so relate to what you say on the doing nothing thing. My son is a bit older and we have gone to huge amounts of effort over the years to find the best way to structure his leisure time. Covid took all olthat all away and now he lives and breathes Minecraft. It could be worse, I know, but HE was far happier when he had his IRL hobbies and interests. We discuss limits with him and they are far more stringent than many have on here, because if he has more than a couple of hours it really messes with his head. We let him have a couple of hours on Minecraft most days, and turn a blind eye to him watching endless YouTube videos on it. They're good for him, they fill him with ideas which he then goes off and enjoys building. He likes making machines, it's essentially programming. By giving him more resources around Minecraft, it's made it a much richer experience for him IYSWIM? It helps that Minecraft is such an open ended game.

Your nephew is in crisis now so a bit of a hill to climb, but when he is ready, we got on so much better when we threw away the rule book of what children "should" like to do. I chucked out all the small world. We had Monopoly, Scrabble, sudoku books, Thinkfun logic games. If your sister can get him to watch YouTube videos that's a good route into a new interest - my son literally can't imagine a new toy or activity, for example, he has to be shown. Or hook into a TV programme he likes. A lot of it does come down to anxiety.

Lastly here's a link to an article on autistic catatonia. Not saying this is the problem, I don't even know if 7 year olds can get this, but it sounds like a "long term shut down" which can affect autistic people and it's distinct from depression but less well known. Just something I picked up from the NAS magazine. www.autism.org.uk/advice-and-guidance/professional-practice/catatonia-autism

Needs little nap- excellent post totally agree with whst you’re saying about ripping up the rule book.

The trouble is screen time is viewed so negatively especially by parents of nt children when in fact it sounds to me like this boy is using it to self regulate in which case it’s not fair to take away the thing he’s using to regulate and then punish him when he can’t regulate emotions. My son isn’t a gamer but reads books which help him regulate and keep calm. No one ever tells me to limit his reading time or take his books away as a punishment because it’s viewed differently by society and is seen as more acceptable but really it’s not different, he’s still shutting himself off and escaping and not being social whilst reading.

That's true @Morph2lcfc but I agree with @Emeraldshamrock and others that gaming can very much be an addiction, not just self regulation, even in the same child. DS definitely uses it to regulate after a bad day at school but all the same, it's awful for everyone when he has had too much. He is fully aware of this and is currently on board with the importance of switching his brain to do other things, even though he finds it hard. Whether we can keep his buy-in through his teenage years, I'm not so sure.

I think we negotiate activities differently to how our friends do too. With some kids you can set up rules like no TV until you have done your homework. That doesn't work here, it's more about managing his stress levels. Often the "rewards" need to come first, and asking less of him achieves more. It's not a parenting style I'd have ever envisaged using, it's something we've had to learn, and outsiders can see it as wet and ineffectual.

The trouble is screen time is viewed so negatively especially by parents of nt children when in fact it sounds to me like this boy is using it to self regulate in which case it’s not fair to take away
It is fair to take it away - he needs another way to self regulate.
It is the chicken and the egg, a comfort and a curse.
You're doing him no favours.
My DS has 3 movement breaks in school with yard break to self regulate so I understand how it works.
It is an easier option but not a good one.
IME he'll become worse socially he'll become a teenager with only gaming in his life.
Martial arts is a great way to teach regulation and discipline.

My DS has improved miles from taekwondo it'll improve nephews MH too.

This is so heartbreaking to hear. He is absolutely tiny to be having these huge thoughts and feelings. Poor boy. It sounds like he is in the wrong environment and it is hugely stressing him out. Would pulling him out of school be an option for your sister? Homeschooling till he gets the help he needs. It seems like school is a major trigger for him.

@Anothermother3

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

if she is ever genuinely concerned for his safety take him to A&E and liaison will assess

Shit. Don't do that unless you're happy to risk the poor kid ending up in a Mental Health Unit. That MHU could be miles away from anywhere, including parents. IT's likely to take a *very long time to get the poor kid back out.

I do have some experience of this (I support autistic people), so bear with me, and I'll read the rest of the thread, and see what's already been offered.

Look for charities with a counselling services.
I'm on a support group for parents/families with young people on the spectrum.
His feelings are common unfortunately. CAMH's waiting is a joke.
Do you have a barnardo's or jig-saw equivalent in the UK?

Thank you all for your helpful comments.

In regards to the gaming she is so lost in what to do. Its his way to escape and whilst it provides him with comfort when he plays it seems to do the opposite when he's off it as its seems to be his biggest trigger, that and the word no. The no could be to absolutely anything. She initially didnt set a limit on the use, she assumed he'd be similar to his older brother who whilst enjoys occasionally playing, he isn't too bothered and doesn't touch it for days at a time. He's pre teen so maybe that will change but currently he would much rather go out with friends or play on his bike. She had to limit the time as she felt that is was taking over his life, that whilst it helped him it was also damaging any progression he might be making socially. I have spoken to her about the different opinions on here and she said she will have another think about it. She doesn't want to take it away from him, she wants to see him happy but i suppose she realises that he can't just live in this fantasy world and has to learn ways to cope in the outside world and without practise how can he? Ah its so so tough!

She also has two older kids boy (11) girl (13) who this affects. They're an active family and she obviously cant leave him home alone so she's also missing alot of time with the other two as they enjoy going to parks etc still. So she either send them alone or they have to listen to the tantrums throughtout any activity from my youngest nephew. All of this is just so unfair. They say they understand, but it still isnt fair is it?
She was actually home schooling him due to covid for a few months. Unfortunately, this seemed to push him further into meltdowns, low moods etc. She has a sen teacher at school who has been supportive, and she actually advised her to return him. That although he struggles socially the routine would help him. She was right to an extent as some days were actually pretty good. But i dont know maybe he was just masking it all? As since then he has felt suicidal. Its all just so hard.

He likes to play mario so we brought him lots of lego for Christmas, crystal rocks to grow some other national geography sets. He used to enjoy nature and we thought it might spark some intrest. We sat and done the crystal about 5 mins in he said his bored now and he hates it anyway. My sister brought him a drum kit as he's been saying he was interested in playing ( another poster commented about watching youtube videos to intrest him, which is how he got intrested through watching people learn on there) so it did work but it once he got it he has used it twice in 3 months. Shes paid for him to have lessons. He refused to come out his room.
She signed him up to karate a few months before lockdown. He was really excited. Lesson seemed to go well, the teacher said to him to change position or along the lines and he never wanted to go back because he felt the teacher picking on him.
Thank you all again, she will start a diary, and has been sorting out relevant forms today so hopefully something will help.
I found a group near us where children can go once a week and help look after farm animals it says on there that lots of sen children love it. Have any of you tried? I suggested this to my sister but whilst he loves nature and animals in theory. He has hurt our dads two little dogs a few times before. So shes worried he might do the same.
Again thank you for all the advice to everyone still not sure how to reply individually you have all been so kind!

Have you looked up pda or demand avoidance at all? It’s often linked to autistic people.

I also just saw this old story from 2017 shared on fb, it’s wrttten by a young autistic girl and highlights struggles in mainstream she has

faithmummy.wordpress.com/2017/09/13/a-day-in-mainstream-school-for-my-autistic-daughter/?fbclid=IwAR1xkWcPFUh4HV0a38865r4CcWwFQmWMSd5aLZ3LZm-tkQf6Joe6beLFbXY

Right. It's suspected autism. So have mum complete this. That will give an idea of where the kid falls on the ASD spectrum. If that's completed a few times, take the average score. It's interesting to have parents complete the screening tool, too, so that one might build up an understanding of where traits come from, and how they've evolved. I've a good few years of experience of understanding autism (and spotting traits), so although we're all different, and experience things/react in different ways, if there's anything you need to know, do ask. I may not know the answer, but I may know where you might find the answer.

psychology-tools.com/test/autism-spectrum-quotient

Those people insisting on reducing screen time: that won't necessarily work. Some autistics use screen time to relax. If that's what this one is doing, and that's what this one has done to self regulate, that's okay.

IME he'll become worse socially he'll become a teenager with only gaming in his life. In *your opinion/experience.... and what's wrong with gaming anyway?

Gaming is not a terrible evil. Many autistics use gaming to learn how to cope with life. Examples: City skylines and simcity are both very good for helping NDs *and NTs to learn and understand all sorts of cross-curricular subjects, as well as relationships.

Being forced to interact with people can be horrendously painful for autistics. Once they've been bullied, they may well generalise and apply that experience to the whole situation. It sounds as though school is *not helping this one. Any chance they can home educate?

People whose work parents/relatives of ASD/suspected ASD people should really read/be familiar with:

Simon Baron-Cohen (little blue book) www.amazon.co.uk/Autism-Asperger-Syndrome-Facts-Baron-Cohen/dp/019850490X/ref=sr_1_2?dchild=1&crid=NACYVYEVBZSK&keywords=simon+baron+cohen+books&sprefix=Simon+baron%2Caps%2C221&tag=mumsnetforu03-21&qid=1616678035&sr=8-2

Uta Frith sites.google.com/site/utafrith/Home

www.amazon.co.uk/Autism-Very-Short-Introduction-Introductions/dp/0199207569/ref=sr_1_1?dchild=1&keywords=uta+frith&tag=mumsnetforu03-21&qid=1616677647&sr=8-1

Lorna Wing

www.amazon.co.uk/Autistic-Spectrum-Guide-Parents-Professionals/dp/1841196746/ref=sr_1_1?dchild=1&keywords=Lorna+wing&tag=mumsnetforu03-21&qid=1616677991&sr=8-1

Temple Grandin can be very interesting to help NTs understand autism. She's autistic, and her stance is that every autistic is different. SOme NDs don't like Temple, some do.

www.templegrandin.com/

It's worth reading her book, The Autistic brain:

www.amazon.co.uk/Autistic-Brain-Temple-Grandin/dp/1846044499/ref=sr_1_1?dchild=1&crid=131KH6H5GTM6A&keywords=temple+grandin&sprefix=Temple%2Caps%2C190&tag=mumsnetforu03-21&qid=1616678123&sr=8-1

There are other texts, but those will do for now.

In terms of suicidal thoughts, make sure kid knows they're loved, and that things *will be okay. Talk about the future, and what can be done. I've talked down autistics who held a knife to their throat. It's a horrendous situation to be in (for anyone in that situation), but offering hope, and making sure they know how much they are loved can make the difference.

Sorry also one of you lovely ladies commented about medication. Is that something they give to children? Does it help? My sister is quiet worried about him having to be put on something. ( we had a horrible incident a few years ago, where a family friend who was diagnosed with depression went rapidly down hill after taking medication and attempted to take her own life, thankfully her other half got there in time and they managed to pump her stomach and save her)

Poor little mite. CAMHS is seriously underfunded.

Young Minds may also be able to offer some support or advice

youngminds.org.uk/about-us/

Thank you to you both, thats great advice. She hasn't looked at pda or demand avoidance but will definitely look into it thank you. Ill have a look through them all and send them to my sister. Morph sounds horrific, are you trained in the field? Maybe going on a course would help? She is even considering re training so that she can help him more, so she can understand a little more but i suppose without a diagnosis she doesn't really know what field to go down, but i suppose any more knowledge wouldnt hurt right? She has been spending lots of time with him reassuring him. Hopefully its helping him a little, it all feels like a sudden nightmare. Although he's been getting worse since reception because he didnt really dispaly and traits before hand my sister i suppose burried her head in the sand. She thought it was first to do with his dad constantly messing him about, then she was really unwell for a couple months so thoughts it may be the stress and worry for her then lockdown happened etc. She thought once everything settled he would be okay. But he just isnt, unfortunately its clear for anyone being around him to see. So whilst she's known about this before its come as a huge shock that he has thought about taking his life. No sure if that all made sense

Sorry morph i didn't mean to say you sound horrific i meant to say the situation about the child putting a knife to their throat. Sorry!

Thank you spidey!

They're an active family and she obviously cant leave him home alone so she's also missing alot of time with the other two as they enjoy going to parks etc still. So she either send them alone or they have to listen to the tantrums throughtout any activity from my youngest nephew. All of this is just so unfair. They say they understand, but it still isnt fair is it?

If the kid is autistic, those "tantrums" are more than likely their expression of overwhelming psychological distress. The kid can't cope, and is expressing that through "tantrums".

It's also normal for ASD teens/people to refuse to leave their rooms. They're trying to learn to live in a world that expects them to just learn to mask/learn to cope with things they struggle with.

Farm animals: some autistic people benefit from spending time with and interacting with animals. some. Not all. Autism affects different individuals in different ways. The only way to understand how is to observe the individual, and have some understanding of how autism presents in people (which is why the reading is so necessary).

&Sorry also one of you lovely ladies commented about medication. Is that something they give to children? Does it help?*
Medication can only be prescribed by a psychiatrist or a consultant pediatric.
If Dsis is only starting the journey it is a very long road, it might be years before he is diagnosed.
There's is a world of thing's to try before medication. Try charts, positive encouragement, if it's PDA you need to use choices in requests rather than orders.

Thank you, we realise that what we call tantrums isn't his fault and that he just simply isnt coping, i didnt mean it in the sense of like my 4 year old will tantrum because her carrots touch her potatoes. Maybe we should label it differently. He doesn't get punished for doing so, my sister just tries her best to calm him and talk him through it, it just last a very long time. He is a very intelligent little boy and is quiet articulate about his feelings, he seems to be able to talk about most feelings. Unless its anger. That is what we call the 'tantrums' as in the physical expression, not his reasoning for it. He will hit things/people whoever is close. He has hurt himself through hitting things also. All i meant by that paragraph is that although its not his fault, he is genuinely a sweet sweet boy and the other kids know this they are still affected. Their just not able to enjoy family time like before, or spend time with their mum. We both have some free time this evening so will be reading through all the links and getting some knowledge on this all.

IME he'll become worse socially he'll become a teenager with only gaming in his life. In your opinion/experience.... and what's wrong with gaming anyway?*
If a teenager sits in a dark room gaming for 20 hours daily it's a serious problem.
Often DC with PDA are school refusers as teenagers.
Many sit glued to a screen all day and night like zombies.
Everything in moderation.

@Kasejay

Sorry also one of you lovely ladies commented about medication. Is that something they give to children? Does it help? My sister is quiet worried about him having to be put on something. ( we had a horrible incident a few years ago, where a family friend who was diagnosed with depression went rapidly down hill after taking medication and attempted to take her own life, thankfully her other half got there in time and they managed to pump her stomach and save her)

Medication isn't generally given for autism, because it's a neurological condition, and one the person is born wit. It's not something that can be treated by any medication. Co-morbid conditions (e.g. epilepsy) *might be treated by medication, but not autism per se.

In my experience, parents/guardians of any person diagnosed as autistic are sent away to read "reputable sources", and work out precisely how autism affects their child/loved one. There isn't much else to be done. Just lots of reading/learning, and working out what applies to each individual/situation. It's the same person they've always known, but this is the diagnosis, this is what's causing the problems.

The parent/guardian's job is to read as much reputable information as they can, and work out how best to support the autistic person. It also helps to explain to the autistic, in age-appropriate ways, what's causing the problems. Sometimes, autistics in meltdown/OPD are in a disassociative state, so don't even understand who did that/made that mess when they "wake" again. If they at least know about some of the things they've done whilst in meltdown/OPD, it may help them to understand why parents/siblings might be upset if things have been broken/outings curtailed and so on.

Yeah, knife to throat was horrible. The best thing your sister can do right now is try the screening tool, and see where on the spectrum the kid lands. If the score is diagnosis territory, it will say so. Then the reading/learning starts. Always making sure the reading is guided by the kid's behaviours. If he *is autistic, reading that material will help the parents to understand what might be happening in the poor kid's brain, and how best to support them in that particular context.

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