AIBU to not have sister and her autistic child (nephew) in my home.

[BetUWanna]

Hi all,

I'll try and give as much detail here with trying to remain anonymous. I've NC for this as this will have outing details in it. I'm here to ask for some genuine advice and opinions on a current situation with my family. I'll try not to drip feed so this may be long.

i (30F) have an older sister aged 33. She is my half sister with us sharing 1 parent.
she has 2 children, 5 and 11, one who is autistic (diagnosed) and the other is NT. I also have a 4 year old myself.
She was young when she had her son who was diagnosed autistic when he was 8. I want to preface that she is a single mum, with both kids having different dads, so I'm not saying for a second that this is easy for her at all. I genuinely love her with my whole heart, but our relationship is suffering hugely due to her son's behaviour. She came to stay for Christmas at my home for 5 days. Some of the instances that happened over Christmas:
We were playing board games in the lounge, my nephew said he was going to watch his iPad. I had a Christmas tree at the top of my stairs, and while we were playing games he picked off each bauble individually and threw each one down stairs and most of them smashed to pieces. There was glass everywhere and there were little children who could have hurt themselves.
he picked up one of the pillows on the bed he was sleeping on, took it to the bathroom and peed on it. Left it there for me to find it. He ate his Christmas dinner with his bare hands, slapping gravy over his face and genuinely making a mess. He picked up a glass, launched it across my kitchen which ultimately chipped my wall and smashed. He refuses to use any sort of cutlery whatsoever. He refuses to brush his teeth, to the point he has black, rotted teeth at the front of his mouth. He's apparently been to the dentist and it's 'fine.' He hits, kicks and pushes my sister and the younger children including his younger sibling. I'm worried about my niece who has to live with this and the effects this is having on her. I have offered countless times for her to sleepover at mine with my DD, but it's declined each time.
He scribbled over my walls and regularly went outside to pee in my garden.

He is incredibly intelligent and my sister says he is high functioning, but i don't know if this is accurate. He is home educated and goes to his dad's house every other weekend. My sisters house is clean, he doesnt wreck things in his house, but if someone comes over his house he will start to lash out and misbehave. He will call us names and tell us he hates us.
I am worried for my sister as he is aged 11 and the same height as me, she cannot control or restrain him at all as he is just too strong. She has had training / classes for this but he is too strong. There is no respite for her. My relationship, and the whole families, is suffering now. We don't want to go to her house because he will lash out, mainly at her. We don't want him at our houses, because he trashes the place and can, at times, cause danger to other family members. What is the answer? My sister works hard home educating her children, and works part time when they are at their dads.

I can see this whole situation is isolating her from the outside world as she lives in fear of her son. I want to offer support, but aside from being a listening ear, I don't know what else I can do. I unfortunately won't allow him in my home now, as I have to keep my DD safe and I will not allow her safe space to be compromised. Which means my sister and niece don't come over, as they are always together.

can anybody please advise me on how / what I can do? Will this ever get better? She won't call out his behaviour as she is too frightened of him, which I understand. But it's straining our relationship hugely.

my relationship with my sister is hanging on by a thread. She has other friends and family members but they all seem to be in the same position as us which is isolating her further and resulting in her losing friendships. I am heartbroken for her. Please can anybody share any words of wisdom or any advice. My parents are in the same situation as me, they cannot cope with his behaviour in their home and their house has also been trashed over the years.

ultimately this is a disabled child who is being gloriously let down by the system.

thank you.

Difficult absolutely impossible no. Its just excuses for neglect and lazy parenting.

So would you hold an extremely distressed disabled child down and force a toothbrush in their mouth??

This ☝️

Before I let them have a mouth of rotten teeth? Yes, absolutely! And the truth is that, had this been done at a young age, it likely wouldn't be necessary now.

Do you really think that constant toothache, abscess and extractions under general anaesthetic are less distressing to a child? Can you imagine how much pain he must be in?

Do you have disabled children? I think I can assume you don't. It may appear neglectful, but it also feels extremely abusive and intrusive to hold an extremely distressed child down and shove a toothbrush in their mouth, even more so when they struggle with sensory difficulties.

It’s very clear this sister hasn’t sought all the support she can for her child at all, so we have no idea if your example is relevant. Maybe he’s one of the children who you cannot brush their teeth, but it’s just as likely he’s one of the children who’ve been criminally let down by their parents borderline psychotic view of established medical practices and the health, welfare and education systems, all of which she has just about refused to engage with.

I'm absolutely disgusted at the responses to this post regarding this child's "feral" behaviour.

Yes, the mum needs support and home schooling the children isn't ideal. The system is letting her down if she needs parenting support. "Autistic behaviours" present in many forms, not just hiding away and being quiet!

My daughter is 7 and has severe autism, she requires constant supervision. She does not leave my sight when at other people's houses (which is very stressful and also makes going to other people's houses not worth it!). Due to her challenging (not feral!) behaviour, I am constantly having to try and stop her doing things. However, she is strong and it is often difficult to actually stop her. Therefore, I end up not going to many people's houses. I am.very conscientious and parent very consistently, alongside my husband, but it is very difficult when your child has extremely high needs and such challenging behaviours. Therefore, we become isolated because others (who have no lived experience!!) view it as poor parenting and "feral" behaviour.

I just feel like people are very quick to say they wouldn't have him at their house, very sad.

Yes for health reasons absolutely just like for vaccines, medication and surgery. Im the parent and certain things are non negotiable .

Come back to me when you've had to be "non-negotiable" on a daily basis.

Me and 3 other health professionals have held my daughter down dor blood tests when they've had to be done. So I get it. But holding her down, completely distressed twice a day to brush her teeth a prevent tooth decay....much harder than being a "non negotiable"

No excuse not on teeth cleaning. Its an argument because you've given them a choice. Its not a choice

Hi, firstly I would start by saying that high functioning autism is a myth and this phrase is actually very offensive as it implies autistic people cannot function properly. Autism is a neurological condition and to do with structure of the brain, it is not an illness and diagnosis is essentially a collection of traits that fit the autisutic thinking profile. Secondly, as a SEND and Inclusion specialist I would have safeguarding concerns regarding the teeth rotting and lack of self care (urinating on items). I am wondering how you feel he is being let down by the system? What support would you imagine needs to be in place? I am wondering if there are other services involved (i.e early help, SEND officer, school support). However from safeguarding perspective accepting and requesting support is parental responsibility and your sister may not be ready.

Alright then. As I said, come back to me when you have experience of parenting a disabled child.

I don’t think people will understand unless they’ve been there. They think they will be able to hold the kid down a handful of times and the problem is sorted. And they don’t get how stressful it is to know that every day, twice a day, which is a LOT, you have to have that 15 min battle, screaming, biting, hyperventilating, tears. And all this at the end of a long day of parenting that has already been far more difficult than parenting a NT child, so you are already pretty on your knees. Is the kid having black teeth FAR from ideal? OF COURSE. But does it show wilful neglect from the parent rather than an inability to cope with a situation outside of her control? More than likely

The most sensible post on this thread ☝️🙏

1 diagnosed, 1 awaiting diagnosis

And honestly, still no excuse to give up on your child. They have severe disability and won't brush their teeth themselves? Brush them for them. But this is not about the disability is it?

Even the girl with no apparent sen has bad teeth so this is clearly a slack parenting issue.

This is a woman who doesnt believe in modern medicine, she probably wont believe in toothpaste

We will have to agree to disagree. Your experience is clearly very different to mine.

I would start by saying that high functioning autism is a myth and this phrase is actually very offensive as it implies autistic people cannot function properly.

I don’t understand what you mean.
To get a diagnosis you literally have to present with ‘persistent deficits’ and ‘clinically significant impairment’ (quoting from DSM V). Autistic people’s functioning in the world is impaired, by definition.
If it weren’t they wouldn’t get a diagnosis.

I agree with pp in that I absolutely hate how people are describing an 11 year old disabled child’s challenging behaviour as ‘feral’. So horrible.

I have 2 disabled children like i said some things are non negotiable. Would you let your child play in traffic because they wanted to or would you parent them as there health and safety is paramount

This could actually be true. I know an anti vaxxer who believes toothpaste is poison. I think it's a common belief in their community.

Yes I have a disabled child, one with autism in fact. I just dont agree with you. It may feel abusive to force a child to brush against their will, it actually is abusive to allow them to develop a mouthful of rotten teeth.

I notice you're skipping past the pain of tooth decay.

I don't think they're quick to say they won't have him round, they've had bits in their house wrecked, sounds like they've been pretty willing to try!
It is ok to have boundaries and not accept that in your own home when it isn't your child.

Hi,

Autism is a neurological condition and this includes certain impairments, however each individual experiences this differently and may have a slightly different profile or areas of need.

Any person regardless of diagnosis may experience needs in one or more of the four areas (Sensory and Physical, SEMH, Cognition and Learning or Communication and Language). This looks different for everybody.

To say high functioning implies that children or adults with autism or whom are autistic (depending on the person preferred identification) can either be low or high functioning. This is ableist and damaging for young people with autism to hear as it can cause feelings of inadequacy. Autistic people are human beings the same as nuerotypical people. You would not describe a nuerotypical person as high or low functioning. Autistic brains function, they just function differently to other profiles of brain (eg. Nuerotypical, dyslexic, ADHD, etc.).

To say high functioning implies an Autistic person is more acceptable for being able to to cope with everyday tasks or mask throughout the day. It therefore implies Autistic people have to work to present as nuerotypical to be accepted in society.

Additionally, it implies that there are "low functioning" Autistic people whose brains "function less" and whom are less acceptable in society.

To be born with an autistic brain is not wrong but the current world is aimed towards nuerotypical brains therefore it is not that the autistic person is in deficit in general but would be in deficit in comparison to a nuerotypical brain.

Diagnosis is not based on medical scans of the brain but on observational study of the individual and a profile of traits.

To be clear, I am not devaluing the importance of a diagnosis nor that many nuerodiverse people experience medical symptoms alongside their diagnosis. I am simply statign a face about the term high functioning as this is my area of expertise and job role for 10 years.

If you research "Is high functioning and offensive term?" You will find multiple results to help you understand. Usually we use "has complex needs" "low support needs" or more specific terms to describe an individuals needs more clearly.

Hope this clarifies for you.

On the issue of teeth cleaning, I have been that parent who has attempted to force my dd (audhd) to clean her teeth when she was just 6 years old. Even if you succeed in getting the toothbrush into their mouth without choking them while they're thrashing around, they will usually then clamp their mouth tightly shut so that you're unable to move the toothbrush around anyway. Honestly, lots and lots of parents of autistic children find it impossible to clean their teeth in this way. For some it's sensory, for some it's because of loss of autonomy and control. Parents of demand avoidant autistic children have it particularly hard in this respect.

Putting all of that aside though, op's sister has a very 'alternative' lifestyle in many respects which is likely exacerbating a difficult situation even further. Additionally, having a child with autism also impacts many parents' own mental health, and she's parenting him alone, so nobody is sharing the load which is particularly hard.

I think social services should be involved- she absolutely needs help and support