Living with an autistic older brother

Hi there,

I am looking for guidance and support, I am a 19 year old female with an autistic brother who is 22. My mum died 2 years ago and I have tried to support my brother and my dad as much as I can but it is very hard. I am only young, and I feel like I have a child of my own to worry about and clean up after. One of the things that really upsets and frustrates me is that he cannot clean up after himself in the bathroom. This makes it a very unpleasant space to share. I feel I can't keep myself clean as the bath is always filthy, the toilet has smeared feces and I have found worse. I can't deal with this anymore. I don't have the means to move out so I am stuck feeling disgusting all of the time. This puts a huge strain on our relationship. I feel the burdens of housework falls on me and my dad and I have no energy to enjoy my own activities. He goes to the toilet around 10-15 times a day and spends hours in there. I can't take it.

  • And is your Dad stepping up to the plate, here? Or is he not coping well with the loss of your mum?

    You are entitled to two things. 'Carer's support' for you. You might be able to self- refer, or ask your GP.

    Sounds like you need social services for your brother.

    This can't go on. Yes, there is a role for you to be part of your family's support, but you cannot shoulder this single handedly. You are barely past the age of majority and need a life of your own to.

    I would talk to your Dad and try to draw in the services you both need. Maybe you and dad need to go to the GP together, or phone social services to kick start the ball rolling for the proper supports.

    Bless you, that's a tall order at your age.

  • I feel its important to point out here that autism and bowel issues go hand in hand so try to be a bit more forgiving he may be feeling very unwell and not even be able to say it to you...also from what you describe (ie the mess of poo etc) it sounds to me he might not actually be well and also the thing with cleaning and autism isn't just laziness or them trying to annoy you etc I.. could explain it but I'd be here all day..in fact people with adhd also have this problem and its basically neurological or to be more precise the neurological problems of autism in the brain manifest themselves in such ways etc it's just that we neuro typical people don't understand. Obviously when someone has asd yes there are jobs you may need to do to help assist them but try to keep your annoyance to yourself as he actually might be feeling really bad or embarrassed about it he may be upset about being like that especially when compared to you that doesn't have those issues..but he won't be able to tell you that...try to think and reflect more on what he can do etc as 1. you might find something you can connect with him on bringing you closer instead of further apart and hateing him and feeling burdened by him as he will pick up on that and 2. If he finds things that make him feel good this also might help his self esteem..look into his diet and see if it can be changed as.that might change his toilet habits.

    I would say that there is no getting around the fact he's always going to need help from you and dad and all power to you for helping so far...maybe get a break go stay at a friend's take a mini break and take it in turns with your dad. You will have to adjust in your own time but it will take effort on your part and you have to be the bigger person here because he is most likely struggling in areas that you don't.Try to view it more positively and learn from it and become a better person because if it..I know its tough on someone so young as yourself but see it from his angle ..you know he has that for life where as you can change your situation easily you have the mental skill set to do so..its like a toolbox you know you have the tools to do ordinary things which he simply does not possess the tools required to do such jobs. And trust me if you do try you'll see in time he has a lot to give back to you and maybe in ways you never expected.  I see my son as a gift he has asd and yes it's been tough but also very rewarding to the point where when I look back I see all the struggles we went through were worth it and I wouldn't change him for the world in fact I feel honored and very lucky to have him in my life.

    Obviously it's up to you how much you help out as you're young..I'm just saying that maybe you're not viewing it from a very positive angle..another suggestion is that if you're picking up the slack from dad..maybe dad needs to employ someone to help if he can't do it all as it shouldn't all need on you at this age for sure..but at the same time.you are going to have to deal with it as you're brothers always going to struggle and family help each other etc or they should instead of falling apart because if it

  • Oh wow! You're definitely too young to be doing this. And if you're busy housekeeping you won't have time to get a job and get on with your life.

    Autism has a set of fundamental values which, in some of us, simply appear like personality differences. For anyone with added disabilities (autistic or not), requires a properly educated individual to care for. It's important you get ahold of the right local authorities to see if you cannot find a carer to pop round and make sure things are how they should be. You could start here https://www.gov.uk/financial-help-disabled

    Not being able to mind self-care, proper nutrition and cleanliness is a severe disability which has grave consequence. Also connect here https://www.nhs.uk/conditions/social-care-and-support-guide/introduction-to-care-and-support/

    Next contact https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/

    You need to live your life. You need to be able to focus on education and find things which you enjoy. Yes, family is important. But you should be able to do normal things: move into a flat with friends, go to a shop for just yourself, experience time to focus on self-growth and nurturing so you can thrive. Expect a clean bathroom. There may be a time in life where you have become stable and financially grounded enough to buy a house with an extra bathroom and move your brother in on your terms. But first you have to get to that place and you won't be able to help them properly until you've put your life together first. 

    Also, I'm so sorry to hear about your mum.