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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Autistic brother and Christmas

11 replies

LisaLops · 22/12/2018 20:16

Bit of a lurker here but here goes.
I am 33. My brother is 36 and has learning disabilities and lives with my parents. Up until last Christmas, he was highly functional and polite, considerate etc. He could go out shopping alone and come home and was able to calculate his money etc. He was just very vulnerable and and easily led. He never received a proper diagnosis, despite our mum trying her best over the years.
Last Christmas, he had a mental breakdown. It transpired that he had gotten involved in an extreme atheist group online and although they started off friendly, they then started demanding money and threatening him and his family. As much as we tried to tell him that they were essentially keyboard warriors, he was worried nevertheless and completely shut down mentally.
He was hearing voices/animals and becoming violent. Nothing he said made any sense.
My mum took him to hospital on New Year’s Eve last year where he was later sectioned under the mental health act. They doped him up with diazepam and literally did nothing other than that. He was allowed home a few weeks later after they said he was fine. He most certainly wasn’t.
He kept trying to run away, police helicopters were out looking for him several times and he was violent again.
He ended up in a unit that looks after adults with SEN. He managed to run away from there the first night also. He was also violent there and trashed the place several times. He was very sexual towards the female staff and made very inappropriate comments.
Eventually, he was diagnosed with autism/aspergers and had suffered a psychotic break. It wasn’t until May this year that he was prescribed respiridone (anti-psychotic) along side his diazepam.
This has taken care of the voices and inappropriate behaviour. Obviously, the austism/aspergers isn’t going to go away so he requires behavioural therapy to help him and our mum understand it.
He was allowed to come home in September and has a carer that comes in every day who takes him to places and they do various activities etc.
The problem is, he is point blank refusing to do anything. He started smoking whilst he was in the unit beforehand and it has become a problem. He will smoke a cigarette and the second he puts it out, he is demanding another. His lips are black and burnt from smoking. My mum has limited him to 1 an hour or he will constantly smoke. She is waiting for the stop smoking service to help her at the moment, but we know he will point blank refuse anything other than cigarettes. She is not allowed to deprive him of them either or the higher ups accuse her of human right deprivation.
Now, during the hour he has to wait for a cigarette, he will constantly repeat “I want a fag” the whole time. It doesn’t stop. He keeps backing my mum into a corner and his language is becoming aggressive towards her. I’m very worried about her all the time.
He has admitted that he is doing this because he wants to deliberately upset my mum and wind her up.
I feel like she is living with a stranger as the person that has come home is not the brother I grew up with.
My mum also has medical problems herself (scoliosis, arthritis, lymphedema) and struggles with her mobility.
My dad has heart and lung disease and can’t do much to help either.
Me and my 8 year old son are supposed to go there on Christmas Day and stay there for a few days. Now as much as I want to be there for my mum, I can’t bare to see my brother deliberately being aggressive towards her and I also don’t want my son witnessing it either. My son saw the mental breakdown last Christmas and it affected him to the point he was crying when he went back to school.
I am being told I am being unreasonable to refuse, but am I?
If I saw my brother being violent towards my mum, I would obviously intervene and I don’t want my son to have to see that.
I’m so sorry for the length of this.....

OP posts:
IWannaSeeHowItEnds · 22/12/2018 20:20

I think your first duty is to your child. I really feel for your parents but if you consider your brother to be a risk, then you shouldn't take your child into that environment.
Your poor mum and dad though. Sad

Didiusfalco · 22/12/2018 20:25

That all sounds very distressing. I have an 8yo and I would feel exactly like you do. I imagine your mum is desperate to see you and needs some support but it sounds very hard on your 8yo (and you). I hope someone will be along soon with a decent suggestion.

Marmaladegin · 22/12/2018 21:27

Just to say, I am so sorry you're in this situation. I've experienced similar. You can't fix this. Always prioritize your child.

FlamingoPoet · 22/12/2018 23:53

Agree, you should be prioritising your child, as they are having to too. Are adult services involved? There is more help available, you just need to be persistent. Could you arrange to meet just for an hour, for a family walk perhaps? Somewhere your son could have a bit of space to run about, your mum get some fresh air and love from you, and your brother a calming healthy break.

LittleOwl153 · 23/12/2018 00:10

No keep your son away. Your brother also clearly needs more help. He probably should be in a more permanent adult SEN facility. Your mum cant stop your brother smoking but she doesn't have to put up with it in the house - especially given your dads health!

agnurse · 23/12/2018 00:14

Agree that this is not a situation you want to walk into, especially with a child. People with autism are very sensitive to change, so it could well set your brother off.

Realistically he may need to go to a facility. They're experienced in managing aggressive behaviour and will be more objective than your mum is able to be (nothing against her, but a parent's instinct will always be to protect a child and that's natural).

Devilishpyjamas · 23/12/2018 00:31

WTF is a ‘facility’ - if you mean an ATU they are shite at handling aggressive behaviour although they will certainly like people up for a decade.

Having said the above the current situation is clearly intolerable (& the lack of support is exactly why people end up in ATUs).

If he is at risk of ending up in hospital I would recommend you request a CTR (care and treatment review). If he has a care coordinator ask him/her. If not ask the CCG commissioners. If that fails ask for the NHS England local transforming care team. Will dig out a link for the next post. If you can get one a CTR is probably your best chance of getting the support he needs. Rather than having him shunted off to an an ATU I would be looking into nearby Supported living. He won’t have been on the radar for that as he was functioning better in the past but it sounds as if things have changed,

Devilishpyjamas · 23/12/2018 00:31

Lock not like

Devilishpyjamas · 23/12/2018 00:33

Guide to CTRs www.ndti.org.uk/uploads/files/CTR-Survival-Guide-Aug-2017-1.pdf

Stress how the situation is becoming unsafe at home & if they don’t put in appropriate support he will end up in a hospital.

PersonaNonGarter · 23/12/2018 00:35

I would not take an 8yo into that environment. I would have my parents to mine.

Devilishpyjamas · 23/12/2018 00:36

If a CTR is refused I would look at trying to sort out a place & support for him to live away from your parents (but nearby). If your parents are reluctant you can point out it is better to try and get something arranged before they reach the stage where they cannot manage. If he has a social worker or care coordinator they would be the person to ask to get the balk rolling.

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