Bedrooms

[Deborah Gordon]

My nearly 20 yr old with GDD and autistic traits likes a very tidy room but he hoards strange things. For years he had a huge box of toilet roll tubes in his wardrobe. i had to discreetly take a few out every now and then or they would have been over flowing!

The problem comes once they leave home.... I also have a 40 yr old brother with cerebral palsy (mild physical disabilities and moderate learning difficulties) coupled with autistic features and he's now living in his own flat with support for 6 hours a day. There's no sign at all of what the support does! They won't do anything unless he asks them to so he lives in an absolute filthy pit! He can't get his head around planning cleaning. laundry etc and they refuse to do anything without him taking the lead. Without being too graphic he has bowel problems and there's often 'mess' all the way from his bedroom to the bathroom but they say they're there to support him and not clean up after him so it stays like that til my mum (63 with fybromyalgia) goes and cleans for him.

My mum suggested drawing up a weekly planner and having it on the kitchen wall so that R could see what was going to be done each day but the agency won't even do that. R will do things IF there is a clear plan of action but he can't get his head around making the plan up. Next problem is R has extremely challenging behaviour and this is only agency left prepared to work with him. My mum raised the issue of health and safety and said R was at risk of infection and the agency said that was his problem if he chose not to clean!

The whole 'care in the community' thing is a farce IMO.

[AspieMum]

This made me My daughter is 8 she has Aspergers ADHD and loads more, she is a terrible hoarder pieces of paper that have been cut up/shredded, bits of material, clothes that don't fit pretty much anything and she stashes them (we call her Squirrel) She loves bags and has tons of them which she uses to put her things in then hides the bag and forgets where My earliest memory was going into her room and it stunk after much searching we found a bag with a lump of moldy cheese in. Jazz used to come home from school and when she took her shoes off they would be full of things she had found stones, coins, blue-tack, bits of her lunch, pencils pretty much anything!
I have given up trying to sort her room while she is home as it is impossible as everything is so important to her And I always avoid jumble sales e.c.t because I know we end up with more than I donate. I got my partner to put up 3 of the canvas shoe holders on her wall as the pockets are small (she is obsessed with miniature things) and just perfect for her 'treasures' also I don't have to hunt very far for things.

Not only are my 2 on the spectrum hoarders but they will touch, play with and break other people's stuff if allowed in their room without realising they shouldn't have touched it in the first place. Also they can't settle for sleep unless they are the only one in the room.

[Melly1]

Deborah,

it sounds like the agency don't really understand asd. Having poor organisational skills, being unmotivated to keep the house clean by the importance of health and hygiene and being unable to direct the PA are all typical of asd. An agency that did understand asd would put routines and schedules in place to support your brother.

Would it be worth involving the LA in this as they are the ones funding the care which is currently not meeting your brother's needs.

Melly1

[AspieMum]

This made me My daughter is 8 she has Aspergers ADHD and loads more, she is a terrible hoarder pieces of paper that have been cut up/shredded, bits of material, clothes that don't fit pretty much anything and she stashes them (we call her Squirrel) She loves bags and has tons of them which she uses to put her things in then hides the bag and forgets where My earliest memory was going into her room and it stunk after much searching we found a bag with a lump of moldy cheese in. Jazz used to come home from school and when she took her shoes off they would be full of things she had found stones, coins, blue-tack, bits of her lunch, pencils pretty much anything!
I have given up trying to sort her room while she is home as it is impossible as everything is so important to her And I always avoid jumble sales e.c.t because I know we end up with more than I donate. I got my partner to put up 3 of the canvas shoe holders on her wall as the pockets are small (she is obsessed with miniature things) and just perfect for her 'treasures' also I don't have to hunt very far for things.

Twin1 keeps all kinds of rubbish and calls it 'memories' (his diagnosis is Autism and is also suspected of having ADHD)

[AspieMum]

I have two boys and although they are both on the spectrum they are chalk and cheese in absolutely everything

Son No 1is AS and ADD and his bedroom is 'after the earthquake' state - can't even see the carpet, but he knows where everything is

Son No 2 is ASD and has a very tidy well-organised room, but can never find things as if they aren't where he expects them to be he doesn't make any attempt to look anywhere else

They used to share a bedroom but neither one could cope so had to separate them for the sake of my sanity

If my twins shared a room we'd be kicked out of the house for disturbing the neighbours sleep as no one would get any sleep at all including the neighbours. My oldest can't share with either of them either.

[Gilli]

My Aspie son, aged 27, from time to time gets despondent about his room. He would love it to be tidy and to be able to find things easily, but doesn't know how to do it. He is a hoarder too and cannot make decisions about throwing things out, apart from actual rubbish. He has years' worth of magazines and comics, but doesn't want to throw any out that he hasn't read and keeps buying more. I have been trying to persuade him that he is unlikely to catch up if his unread comics and magazines go back more than a year or 2, but he is having difficulty accepting that. He decided to do some sorting of boxes, taking some of them to the kitchen to do so, but he didn't throw anything out, he just sorted the stuff into more boxes, depending on what category he reckoned it came under! I have been trying to do a little bit of the sorting for him and have thrown a few things out.

His inability to decide about things extends to his clothes. If I ask him if he wants to keep an item of clothing or if he is likely to wear it again, he'll say, 'not sure' or 'don't know'. I have taken some clothes out of his wardrobe which he hasn't worn for a while or which he turned down when I was trying to help him to decide what to wear one time and have put them outside his room. He hasn't wanted any of them, so I might make the big decision for him as far as those are concerned and donate them to charity.

My autistic son, aged 26, is currently using his sister's room, as we are waiting for funds to accumulate for a new bed for him and we also want to decorate his room. He is not particularly tidy either, but he is not a hoarder. When faced with the decision, will I keep it or not, he can't be bothered deciding and just throws it out or gives it to charity. He doesn't like spending any length of time working in his room, so I've had to do a lot of the sorting, which I haven't done since my mishap in August.

My Aspie daughter, aged 34, is also a hoarder and her room here and also the one where she lives most of the time are both cluttered with stuff she doesn't need, though here is probably worse than there. I have tried getting her to go through her things with me when she is at home, but I think she also finds it hard to decide about getting rid of things, so occasionally I try to deal with some of the stuff myself, 1 drawer at a time. Besides, when she is at home she spends most of her time on her laptop.

By the way, in case you're wondering, when she is home she either sleeps on the settee in the sitting room - which is quite cosy - or my son sleeps in the camper van, which can also be made quite warm and cosy.

Just some of my experiences with ASD adults and their bedrooms!

Gilli

[AspieMum]

My 12 year olds (one has Aspergers and ADHD and the other Autism and probable ADHD- waiting to be assessed) both have messy bedrooms with toys all over the floor and hate it when it gets tidied- they like it messy. My own room (I have Aspergers) is messy but primarily because I don't have time to tidy it properly (that said it would not be the it never been lived in level of tidiness my mum calls tidy if I did have time as there would be some stuff not hidden away in draws- if anything is out at all she calls it messy). She isn't diagnosed with anything but she does insist on everything being her way even in my house! However, she's the only support I have access to so we have to put up with that as she is a big help with the house work and occasionally helps look after the twins so long as their big brother is there to help with video game issues.

[Gilli]

Hi AspieMum

It sounds like you're having a hard time of it with those bedrooms! A website that has helped me a lot is messies.com. You should check it out. The owner of it has also written a lot of books. She refers to messies and cleanies. I am a messie, but my mother was a cleanie and also nagged me a lot about my house when she was alive. My sister took over the role after our mother died, but doesn't do it quite as much now. There are also groups on Yahoo where people can share their joys and their woes in trying to find that tidy house. I'm in a couple of them and it has been helpful to know that I'm not the only messie in the world.

It's great your mum is able to help you out with your twins.

Gilli