Should i make my asd child move to a smaller house and share a bedroom?

Hi all, Just looking for advice as feeling really alone and unsure at the moment. I am a mum of 4. One of my ds has asd and my youngest dd is currently being assessed. For the last two years I have been ill with seizures due to a condition known as NEAD and these seizures get worse with stress. We currently live in a 4 bed house which allowed my ds to have his own room where he could go and calm down. I lost my job last year due to my illness and whilst getting better I am looking to the future and waht is to come for 2016 such as hopefully returning to work. I was in a high managerial role as a head of department which paid the rent comfortably for our 4 bed home. Unfortunately I wont be able to take on such a high pad job for a while due to my condition so I am concerned when i get a job I will no longer have any houisng benefit to help with the cost of rent. With our budget already tight I fear we would not be able to afford to live here anymore. I have gone on the council waiting listing but getting a 4 bed council house is looking very unlikely and there is a 3 bed that we could move to soon on the council scheme but Im worried that I will be doing harm to my family by forcing the boys to share and my daughters to share a room too? The worries have been building up leading to an increase in my seizures the size of the house is also proving expensive to heat and power too. Im just not sure what is the best to do for my family we are already in debt due to my job loss last year and cant see the wood from the trees. Any thoughst on this kind of situation would be grateful my asd ds in 10 in march so I know adolescence is on the horizon too? Do any of you have childrne that share ok with asd???

Zitami over 10 years ago

I don't have any direct experience of this but I did have a couple of thoughts.
Firstly, if the situation you are in is that you can no longer afford the 4 bedroom house then you should move and you should not feel any guilt or anxiety about that. Yes it probably won't be problem-free, which would be the case whether your son was on the spectrum or not, and it probably feels harder giving up something you have previously enjoyed than it would if it had never been a possibility, but you are not proposing anything abusive and you and your family will find a way to adapt and cope. I am sure there will be both positive stories of autistic children sharing rooms and horror stories of the same if you search them out, the important thing is what is best for your own family and if the worry is making you ill and you simply can't afford to stay where you are long-term then I think you have already answered your own question. There is also the possibility already suggested of converting one of the other rooms into an extra bedroom if you wish.
I think you are right in thinking that a planned move would be better than an emergency one. It is common for us to find any change more difficult than most and I know for me the more time I have to get used to an idea, the more prepared I feel and the more in control of the situation I have (you could give him some control through involving him in choosing which room will be his, decorations etc.) the better.
If he objects to the move you could also tell him that you understand how he feels but explain some of the situation to him (in an age-appropriate way and making it explicit that the move will mean you are OK for money so he doesn't worry), just enough that he recognises you are moving due to circumstances beyond your control and for everyone's benefit rather than simply ignoring or riding roughshod over his feelings. Children can sometimes cope much better simply for knowing that you care and are doing your best.
There are also other things you could do to help facilitate some 'alone time' for him if he is struggling with the lack of his own space, such as allowing him to play (or read or whatever) in your room for a while, or using a babysitter so you could take him (or the others) out for a bit.
I do hope your own illness is being adequately treated and things get a little easier for you soon. It certainly sounds like you have a lot on your plate at the moment.
Former Member over 10 years ago

The only other thought I have had is to find a 3 bed house where you could use one of the other rooms (e.g. dining room or sitting room) as a bedroom. If the kitchen was big enough to use as the main living room then you could rearrange yourselves using the available space.
m4dch3m1st over 10 years ago

Thank you for your reply. We do get some DLA for DS which has allowed us to get the higher LHA for housing benefit currently but the DLA we have is pretty much used up each month from support to help him at school and clothing as he gets through clotehs quite quickly an weighted clothing as he is hyposensitive. I guess I could probably relook at how i use this money for him. I think I am just looking for solutions to worst case scenarios in the future. If we had to move with no choice the changes would have a major impact on him so if we had to move moving in a controlled manner would be better but once we move i think it would be impossible to move back to a 4 bed if he just couldnt cope?
Former Member over 10 years ago

(It seems that DS = darling/dear son rather than disabled son which is what I guessed it meant. )
I wonder whether DLA would apply to your son. I don't know if he is affected enough to qualify. http://www.autism.org.uk/about/benefits-care/benefits/children.aspx This might help contribute to the additional costs of having a 4 bed home.
I also wonder whether your NEAD is at all related to the meltdown attacks that some people with AS have. I'm guessing there is a spectrum of severity which might span a loss of control or meltdown to something that looked more like an epileptic seizure. Do you think you or your partner have autistic tendencies (AS is often inherited so this is a possibility partiularly if a sibling is also affected)