Neighbour's autistic son, sleep deprivation and health/housing impacts.

[Anonymousaurus]

I am in a desperate situation and would be grateful for any advice anyone may have. I think I've included everything but please feel free to ask if I've missed any details. Sorry it's ended up so long, there wasn't really a brief way to give full context.

I live in a mid-terrace house which I privately rent, my two children (10 and 12) are with me 50% of the time and we have lived here almost 5 years. Last August, a lady bought the house next door and moved in with her autistic son. I would guess he is around 8, but it's hard to tell as he is still in nappies. He is non-verbal and I believe also visually impaired. He makes loud, vocal stimming noises almost constantly whenever he is awake.

For context as I know I'll be asked, I know he is autistic because shortly after they moved in, while I was out for the day, someone came into my garden and added an extension panel to the top of my fence. When I came back home and went outside, the child's grandmother came out to the end of my garden and told me they'd had to do that and affix it from my side of the fence because her grandson is autistic and he climbs things.

The issue I am having is that the child wakes frequently almost every night, and very often for several hours right through til morning. I am woken almost every single night by extremely loud banging which I believe to be his bedframe slamming into the wall when he jumps on the bed. This also sends vibrations through my floor so I can hear and feel it. He also bangs on the window (I have seen this from my garden), rattles the door (I think he is locked in overnight for safety) drags things across the wall, bangs toys into the window and shrieks and cries. It goes on for hours. I very rarely hear anyone go into his room to settle him, but whether they do or not makes no difference to the noise.

I have tried various types of earplugs, white noise machine, having a fan in my room, opening the window and nothing even remotely dampens the noise. Using ear plugs only puts me at risk of missing my alarm and not getting my children to school on time, it certainly does not help me sleep.

Often after a bad night I finally drift off to sleep, only to be woken again shortly after by very loud banging any time from before 6am and this continues usually until well after 9am. Obviously this only applies to weekends and school holidays, during term time I have had to drive my children to school (20 mins away) on no sleep whatsoever on many occasions. I'm very worried about having an accident.

The very bad nights where he is awake anywhere from between midnight and 2am until my alarm goes off are around once a week on average, though sometimes there are clusters of nights like that one after the other. He also takes several hours to go to sleep each evening, with loud banging, crying and shrieking beginning at around 6pm and usually not stopping until after 9pm. I have to delay putting my own children to bed until about 20 minutes after the noise has stopped in case we wake him and it starts all over again. I am woken up by banging at least once pretty much every night, but the anxiety I experience around going to bed is now so severe that I often can't sleep for hours even if he makes little to no noise after he has gone to sleep.

I have tried sleeping in my lounge but as our bedrooms and the lounge are on the adjoining wall, all of the noise he makes travels up or down wherever he is and it is basically just as loud down there. It sounds as though he is inside the walls in my house during the day. When he plays in his room, there is scratching, tapping and banging along with vocal stimming which seems to go on all day. He goes into the garden when it isn't raining but the vocal stimming seems to be even louder when he is out there and he also throws stones and knocks them on the fence which is also noisy. I get absolutely no peace unless I put music or white noise on, but this has to be so loud to drown him out that it's not really relaxing.

On top of this, the boy's mother has a partner who got himself a Rottweiler puppy at the start of this year. He obviously cannot have the dog with him while he works, and so he drops the dog off at my neighbour's house in the mornings, usually when I am leaving to drive my children to school and the neighbour is putting the child into the taxi to go to school. The dog barks a great deal throughout the day, especially when he is left on his own which seems to happen at least once a day for various lengths of time, and it isn't collected until around 5-6pm. This means I cannot catch up on sleep during the day.

I have lupus which is a chronic autoimmune condition which causes inflammation, chronic fatigue, pain in my muscles and joints and many other symptoms. Inflammation is triggered primarily by illness, lack of sleep and stress. I went off sick from my job because the sleep deprivation was so bad I could not function, and was enevtually sacked at the start of this year because I could not provide a satisfactory answer when asked when I thought my health would improve, because the neighbours aren't going anywhere. I am now at risk of eviction as I have defaulted on my rent.

I have tried all available avenues to get support and advice but it seems I have absolutely no rights in this situation. My landlady isn't responsible for the noise which I do understand, so she won't consider soundproofing as it would cost her money and reduce the value of the property, she also won't negotiate my rent. As the noise is coming from a disabled child as opposed to 'nuisance noise' the police aren't interested. My landlady advised me to report my neighbour to the council, which would require me to take recordings over a period of time and submit them for review, after which the council may send a noise abatement order to the property. I am skeptical that this would achieve any meaningful resolution as the neighbour is already aware how this is impacting me and I highly doubt anything can be done to stop the child from doing what he is doing. The mother smokes weed during the day, I can smell it before I've even opened my car door when I get back from the school run and it's seeping through the wall into my kitchen at the back of the house, and it seems she is able to sleep through or ignore the noise for hours. I believe the child is being locked in his room and ignored throughout the night most of the time, but the police and social services don't seem to think this is a problem.

I had to contact social services on a couple of occasions during the summer. On one occasion I could hear the mother screaming and swearing at the child to shut up for a sustained period of time from around 3-4am. This was during the very hot period when everyone's windows were open at night and I expect everyone in my terrace heard. Later that week, after being kept awake all night, I went to get my cat in from the garden at 7am and saw the child had removed his nappy and was standing on the windowsill fully naked slamming on the glass and shrieking out of the top window. Behind the row of terrace houses where I live is a public thoroughfare which many people use to access the high street and train station, so a lot of people could have seen him as he wasn't let out of his room for a further 2 or more hours as is normal on non-school days.

A couple of nights ago I called the police at 2.30am because the banging and crying was far louder and more persistent than I'd ever heard before. They attended the property, knocked on the door but my neighbour didn't answer, so they left. The noise continued for several more hours. At 4am I spoke to the officer who had attended the property and he told me that unless they are aware that someone is definitely at risk of death, they aren't authorised to break down the door or even knock more aggressively. As they couldn't hear the noise from the front of the property (his bedroom is at the back of the house) they left and would not come back. I explained that the screaming and banging had been going on for over 2 hours and I was concerned it was far louder than ever before but was told that doesn't constitute an emergency. The following day the boy still appeared to be in his bedroom all the way through to the evening. I called 101 to report that I believed the child had been locked in his room since the previous evening but they weren't really interested.

I am at my wits end and have been contemplating taking my own life. I have PTSD from highly traumatic birth injury when my daughter was born, and when I am woken in the night by the loud banging, my nervous system reacts as if someone is breaking into my home. I have started experiencing chest pains during the night for the past 3 months and I have frequent panic attacks during the day because I get absolutely no break from the noise whether it's the child or the dog. I have posted polite requests through the neighbour's door twice, the first time asking if she could possibly move her son's bed away from the wall, and the second time requesting that she ask her partner to make alternative arrangements for his dog during the day if he is unable to take it to work with him, but neither of these have been responded to even though I provided my number and no action has been taken to change anything as far as I can tell. The noise has actually gotten worse.

My parents are my guarantors and since I defaulted on my rent they have been required to pay this for me. They are now pressuring me to give notice to my landlady so that they can get out of this contract, but I have nowhere else to go because without being able to get my health back on track, I cannot return to work.

Moving in with my parents is not an option for me because I would be nowhere near my children and I do not have a good relationship with them. We are essentially estranged and moving in with them would almost certainly see my already very fragile mental health declining even further very quickly. They agreed to be my guarantors five years ago as I was financially stable and this sort of situation just didn't even cross our minds. We have barely seen each other since then.

For the first time in my life I am receiving universal credit and am currently applying for PIP under the advice of several people I've spoken to at the DWP. I had never previously considered that I might be eligible for PIP nor had I even wanted to investigate this as I had been managing very well as a single parent working full-time from home until this family moved in. I feel incredibly guilty to be receiving benefits of any kind but unfortunately the impact of the sleep deprivation that this child has caused has been profound and I see absolutely no way of improving the situation while I'm still living in this house. I cannot leave the house to go to another private rental because my parents will not agree to be my guarantors again, which I can perfectly understand but it does sting as I did nothing irresponsible to get myself into this situation. I cannot afford to live anywhere else in this area anyway now that I am relying solely on UC, and so the only private rentals I would be able to find would likely be one bedroom flats or studios.

I have looked into how I might get myself on the social housing list but it seems that the only way to do this while privately renting is to be at risk of eviction. Since I have a guarantor, I don't think that my landlady is going to go down the eviction route, as legally she can continue to demand that my parents pay the rent for me and they are obliged to do so, otherwise she can take them to court.

I know the child is disabled, but I am now a burden on the state when I never needed to be, and there seems to be absolutely no route to a way out of this situation for me, that can't be right surely? Am I missing something? I do understand that his mum's life must be very difficult indeed, but she does not seem to be intervening when he is waking during the night at all for whatever reason, or even trying to stop him from banging things into the wall. I do not understand the rationale of moving into a mid-terraced house and not even giving the new neighbours a courtesy knock on the door to explain what they are going to be in for. I have tried so hard to be patient and understanding, it took me more than 6 months to raise any kind of complaint with my landlady or the neighbour because I wanted to be compassionate to their situation and give time for the child to settle, but the sleep deprivation has gotten worse and worse as time has gone on and nothing is being done about it, this is simply not sustainable.

Does anyone have any advice at all, for any part of my situation or the whole thing? I am honestly at breaking point and not very far away at all from harming myself.

Stop being so nice about it and start recording the sound. There is absolutely something that the council can do about it - they can soundproof the childs home so it doesnt disrupt neighbours.

It is just a question of advocacy and money. But it will be Cheaper than alternatives.

Hi OP, very different situation but I recently had to support a friend who was on Universal Credit and needed to move urgently due to domestic abuse. She could not get a guarantor because they must be a UK-based homeowner and her parents live in another country. She had no other friends or family who were willing or able to do it. So even though letting agents were fine with the idea of renting to her while on UC, and she passed all the other checks, she could never proceed as she did not have the sodding guarantor.

There are commercial guarantor companies that will act as your guarantor but most, like Housing Hand, one of the biggest, still require a "co-signer" who essentially have to cough up if you do a runner, so not that different from being an actual guarantor.

However, she did eventually have success with a company called RentGuarantor. They genuinely act as your guarantor (via an insurance model) and you pay them a monthly fee for this service. They accept people on UC.

The problem is finding letting agents and landlords who will accept this kind of guarantor, but some will. You just have to not give up. Explain to them from the off that you don't have a traditional guarantor but you can get the same protection for the landlord via this other method. Ask the agent to at least ask the landlord if they'd be willing to consider it. That's what my friend did, and eventually one of them said yes. Have a look at it anyway and see what you think.

Also consider Housing Associations. With some you have to go via the council but others let you apply direct. You would then go on a waiting list. It's a long shot but good to cover all bases. Also maybe give Shelter a call and see if they can advise anything. I feel for you so much, it sounds horrific. Sleep deprivation is torture.

Thank you. I have felt so conflicted over reporting anything at all. I ended up deciding that my concerns were valid, but it's helpful to have that validated by everyone who has said they have first hand experience of this kind of child and that I was right to report. Any time I've reported it's been out of genuine concern for his welfare, I'd never expect the police or social services to be interested or able to assist with my own issues.

Thank you this is very helpful. My sister did actually mention something like this to me but we haven't had a chance to discuss it yet.

If it is really that bad that you’re feeling suicidal then of course you should move, by any means available. I don’t know what other solution you think people are going to come up with.

Ignore that poster @Anonymousaurus , she is being a btch. You are not harassing the mum, your behaviour in my view is quite measured and I would not have been so kind. I get she has a difficult life but she is allowing yours to be ruined to make hers easier.

As mum has refused to engage then straight to council for recording kit and noice abatement. She clearly isn’t going to engage up unless you ramp up the pressure.

In the meantime could you get a vibrating alarm clock to go under the pillow then heavy duty headphones, white noise etc plus maybe go in the attic rooms- throw everything at it.

This sounds unbearable op. No practical advice just wanted to offer my sympathies .

I would ask her if as she can't stop the nighttime disruption if she could at least stop having the dog so you don't have to cope with being disturbed 24/7.

I think at this point you have to try everyone you can.
MP, local councillors, charities, everyone.

The landlady should be doing so much more as the value of her home goes down the drain, imagine if she tries to rent it to someone else after you.

Where do your parents think you are going to end up if you leave this house?

Thank you. I hadn't even considered my local MP but it's been suggested a lot so I will follow up with that.

She will be renting to someone else, in fact she told me she's kept my rent at a reasonable rate despite inflation so she could be charging a lot more, and I don't doubt at all that she will put the price up a lot when I do go. Can you imagine if you moved into a new rented house with your family and on the very first night were subjected to all of this without the landlady having mentioned a thing?!

My parents don't know where I'll end up. They haven't really said much at all other than they are very disappointed to have been contacted by my landlady. I haven't really heard from them since I told them I lost my job in March. I think they think mental health issues are like having a cold.

So, white noise turned up loud can drown out quite a lot and if you combine with earplugs I think would help you get some sleep in the short term. Reading the OP, it sounds like you haven’t been doing this properly due to worrying about missing alarms but if you sleep with your phone under your pillow and set the alarms to vibrate, it’ll get you up.

You poor thing, you need to move to the other side of the house, i do understand that this means your child/ren will have to put up with the noise but I'm sure they would rather this than that they lose their mum! Get a couple of weeks kip and get back to the point you can work. One permanent solution is to move back in with your parents then get them to throw you out so you can get housed by the council. This is a long, painful road that is, at best, morally grey. In fact it is worse than that. Ask your landlady to evict you, for a made up reason....like she wants to sell?......The process of getting a court order is long but the only legal option open to you. It may help to know that the boys mum can go to the doctor and ask for melatonin, the sleep hormone missing for a lot of ASD sufferers, and get this for her son on prescription, it might help everyone from the sound of thongs. I'm so sorry this is happening to you x

Have you tried knocking on her door and having a face to face conversation other than a couple of notes you left her? That would be the first thing I would do.

I’d speak again with your landlady as a first port of call. Send her - if you haven’t already a detailed letter outlining the facts and the impact it has had on you. Including your health and loss of job. I would even go as far as offering her to come and stay over a night when your children are away to experience the noise herself.
I would also be recording as much of the noise and duration as you can.

I would be asking for one or more of the following outcomes from the landlady.

1. that she installs some form of soundproofing. I can’t see how adding soundproofing would decrease the value of the house.

2. that she takes over responsibility for dealing with the neighbours and the noise issues in order to make them stop. Ultimately if this becomes a neighbour dispute she would have to declare it when selling the house and as it stands nobody else is likely to either buy or rent the house. So it is in her interest to sort this out somehow.

3. That she gives you notice to leave and goes through the eviction process in order for you to get assistance with council housing

Ultimately it would be to her advantage to assist you somehow. Sound proofing doesn’t necessarily have to be very expensive. Some former friends of mine simply moved their bedroom around and put wardrobes along the party wall with double thick gym mats floor to ceiling (I don’t think they were even attached to the wall) behind the wardrobes. This was remarkably effective and reduced the noise to a bearable level. Would something like that work?

No advice really but think contacting your local MP is sound. I just wanted to say that I really feel for you. Fhe whole situation is intolerable. Autism or not, nobody should have to put up with that noise. It’s understandable that you feel at your wits end and I hope you can see some light at the end of the tunnel. Best of luck to you.

This sounds torturous OP. I think you need to give your notice to leave. Then get advice from your MP or Citizens advice. You could move temporarily maybe with a friend or family member or present yourself as homeless to the council.
Far from ideal but you cannot carry on in this house. Good luck with it and look after yourself, chronic illness is so hard.

I can't sleep with earplugs in because I've yet to find any that fit comfortably, and honestly I have to have the white noise up so loud to drown him out that it's unbearable, definitely not conducive to sleep. I've considered rearranging my bedroom furniture but annoyingly I have built in wardrobes opposite the 'problem wall' which is where the head of my bed currently is and it's an odd shaped room so I can't really move the bed away.

Genuine question for the parents of children who seem to have similar issues to this boy, if you were already avoiding confrontation with a neighbour, would you appreciate me knocking on your door to chat during the day?

I would avoid whoever the likely culprit was for calling social services and the police on me because I wouldn't think they wanted to talk in good faith after escalating. In my case I know I'm not abusing my son though, but put yourself in her position.

My son has stripped naked and flashed the neighbours through the window because he can't help but take his clothes off and I do sometimes have to leave him to make his food, use the toilet etc. He also climbs on everything. I have also shouted some colourful things when I've been utterly sleep deprived for months on end and I was at breaking point. Not my finest moment, but I am only human. Sometimes my son just cries, and cries, and cries, and screams, and shrieks and if I try and intervene he just gets louder and louder so I have to put him to bed and close the door. I don't lock him in, he can leave if he wants to, but he often doesn't. I also bed share with him, but that doesn't mean he settles. Sometimes he can be at his loudest and bounciest at night. Getting melatonin from the NHS in our area is really hard. It's only recently that our local community paediatrics have started accepting referrals for sleep need, we had to be referred out of area prior to this and all our requests were rejected as they were so saturated they had to decline out of area referrals. Almost 8 years of broken sleep now.

So I can absolutely empathise with the woman next door.

I also have me/cfs and my sleep isn't good at the best of times but now I live with someone who exacerbates my symptoms. I can sympathise with you too.

Even if a neighbour approached me in good faith though, I don't really see what else I could do about my son and his energy and his vocalisations and his sudden emotional outbursts. It would make me feel like I was being managed out of my house if a neighbour kept complaining, and then what? Where would I go? Who would be the next person we lived next to? Who would be next to complain? It already feels like people look at us with disdain when we're out and about and people can't cope with my son, and that's when he's making his happy noises, the utter disgust we get when he is upset, or the unsolicited advice that is about as helpful as a chocolate fireguard.

Thankfully we sleep on the outer side of our semi.

I know that the endless administration and phone calls to try and resolve a situation is nigh on impossible when you have a chronic condition and sleep deprivation, because that's my daily life. Endless administration, where each and every thing seems to need to be treated as a top priority but no bandwidth to do it, and stress of not being able to do it making the chronic illness flares worse.

It's crazy how much paperwork is involved in having a disabled child, when they're dependent on you 24/7, you can't even go to the bathroom in peace or enjoy a shower and yet you're expected to find time to do it all, sleep, eat, earn a living and stop having any limiting disabilities you may have.

I'm not saying you should shut up and put up with it, in fact I think you should be vocal about it, just to the right people. You can refer yourself for a social services assessment as a person with a disability and they may be able to help support a council housing application under medical grounds. This is something I have done for myself. I can't promise they will help but you are entitled to an assessment as an adult with a diagnosed disability.

@AnonymousaurusCan you give us a diagram of the layout of your house including furniture? Just thought someone might have some ideas how to help make the situation better if we can see a rough layout

Can you have another think about the loft room as that seems to be the room furthest from the noise? I'm wondering if there is any way to cheaply help the sound proofing up there. Being in a rental won't help, but if you can hang heavy curtains or put blankets over the floor it might help deaden the noise a bit. The more you can fill the space the less the noise should travel. Even cardboard boxes filled with spare bedding or clothes might help.

Yes because there an an absolute abundance of reasonably priced private rented houses. So easy to just decide to move. This thread is so frustrating, can absolutely tell those that don’t rent in the current climate

You get used to it though, even on the loudest setting. Similar to using earplugs. It depends how desperate you are to sleep because when my youngest was born and screamed all night, my DH and I did shifts with her and we would have the white noise on full volume and practiced sleeping in the comfiest positions with earplugs in. It was weird and felt terrible at first but we very quickly got used to it.

If you are feeling suicidal over lack of sleep please try again with the above. You can drown him out, it just feels equally uncomfortable at the minute but if you persevere then you will adjust and you should be able to get decent stretches of unbroken sleep.

Why hasn't he been prescribed Tercian or other? My autistic son takes Tercian every evening ; only way for us and him to get some sleep.

I wouldn't advise letting your naked disabled child be standing at the window in full view

I wonder if the parents could apply for a grant for a safe bed? That would cut down on some of the noise. But doesn't solve the core problem of the boy's family having adequate support and suitable accommodation.

Sounds awful.
agree with other posters re contacting your local MP.
keep logging with non emergency 101 (unless you have serious concern)
social if you feel it’s warranted - locking any child/person in a room is just so dangerous and neglectful.
contact housing associations and your council too, request support from your GP if this is impacting your health so much that (& I totally beleive you btw) that your running on fumes and lost your job, a medical support letter would help your case.
if also request short term sleeping tabs and even a night in a cheap b&b or maybe your sisters for a night or 2 for some respite? Appreciate we don’t all have those options
sadly you’re going to have to be a bit less considerate and understanding and start logging everything and making ‘noise’ to support your case (not actual noise!)
good luck
edited to say, I’m sure there’s a team within citizens advice that help you completing housing and benifit applications etc