Published on 12, July, 2020
Hi there, not sure if this is the right place to post, if not feel free to move it to wherever suited.
So basically my brother, 21, has high-functioning autism, OCD, and just general social problems. He was never diagnosed from a young age even though looking back at it now all the signs were there but they were just missed. He was 'officially' diagnosed 5 years ago and ever since the quality of life for both me, 18/19, and both my parents has steadily got worse.
The story behind this is long so I'll do my best to condense it down as I'd love just some advice really for how to deal with things from my point of view.
My brother had always been a bit different since from a young age, my parents often saying that he shyed away from various social gatherings and tended to have a routine going since the start of secondary school. Both my brother and I attended the same secondary school and my friends and those who also knew me and my brother sometimes mentioned that he was a bit different which then really alerted me to this but I just thought it was nothing.
Then one night he was violently sick and my dad had to deal with it due to my mum being at work, it was awful. My brother was freaking out (even though he'd been sick many times previous to this) and for a week straight he was so fearful of being sick that he used to lock himself in a room to avoid 'anything nasty' coming into his system and making him sick. Many trips to the doctors and hospital followed and eventually he was 'diagnosed' with a stomach disease (I would list it here but I'm afraid that it'll make this post more obvious for him to find, and believe me that would make both my parents and I's lifes even more difficult).
He was prescribed two types of tablets, ones to stop him from being sick. Cycziline and Domperidone. Due to the lack of help from the NHS, instead of him taking these tablets for the listed periods of time, he would carry on taking them past the prescribed date, and even though my parents did their best to prevent this, it would result in meltdowns that would never be resolved until he took his tablets. He became so fixated on making sure he took them he had to record himself each time, reassuring himself on camera that he had taken them, resulting in him taking over 20 minutes to take a single tablet.
The doctors just basically gave up in my eyes and allowed for a repeat prescription, and despite the amount of times my parents have gone to the medical centre and told doctors this, he still would have a repeat prescription which is even still going today, 5 years since he first started taking them.
To follow from this routines became more apparent in my house, resulting in him having to do certain tasks at certain times throughout the day, it started off small, only affecting him, but overtime became directly involved in both mine and my parents lifes, meaning I'd have to wake up mega early everyday just to be out of his away, the same with my parents. This continued to get worse to this day to the point where it's almost impossible to live here.
If you do something wrong in his eyes, such as ignore him, even if it's intentional or not, the only way to resolve it would to say you're sorry to him otherwise he would have a meltdown. At first we just kept saying it but when it gets to the point where if I do something too loud I would have to apologise for that. This happens on a daily basis and it's so degrading.
He also has got to the point where he basically 'owns the house'. If you go in the bathroom 10 minutes or so before he's scheduled to go in with his routine, he'll bombard you with constant anger before making you apologise for it. Just to note that he's in the bathroom about 6 or 7 times per day, taking up to 40 minutes due to his excessive hand washing and cleaning with his OCD.
Sorry that there's a lot of text right now, there's just so much to describe.
His OCD makes him have a daily routine of cleaning the entire house, having no privacy for my parents or myself. I'd also like to state that since he was sick all those years ago in his old room, he moved into my parents room ever since and forced them to sleep downstairs on the sofa. This has been going on for about 4 years, also they've invested in a sofa bed, it's still not right.
He got sectioned about 2 years ago after many battles with the NHS to get him there as it was impossible to live here. We tried everything possible for him to get help and eventually we were able to get him sectioned for his own good. It took the entire day to get him out of the house pretty much and was taken to hospital for just over a month, this was because he was smart enough to play innocent and convince the staff he was 'all better' and came home shortly after. He had a brief week or so of acting better at home until his old routines came back into place, and even though we cried out to the NHS again, they still thought he was fine (which he really isn't) and basically ignored us, meaning we had no one else to turn to for help.
From this life continued to get worse and began to affect me more than it used to. It started to affect my life socially, going out with friends I'd always try and act happy as even though I was having a great time, I had all the stuff back at home to worry about and it began affecting me more than it used to. I of course told my friends about it all and they were there to support me and still are, but ever since I came back from my first year at University he's been so much worse with me to the point where I have to tell him everything I'm doing each day.
I have to give him a time when I'm going out, when I'm getting my lunch, when I'm waking up, and so on. He would always make comments on me living my life, such as going out to the pub or clubs (like a regular 18/19 year old would), calling me an alcoholic everytime I would go out, and saying that I'm the blame for anything that would go wrong and that I'm drunk all the time (which I'm obviously not, I can never come in drunk at home as I know how bad it can be for me). It's gotten worse by day to the point where I just have to leave home sometimes.
It also affects my relationships with girls, as I know that girls I meet I would soon enough have to tell them of him, and I could never bring them back home due to him. Not only would it be embarassing for them to see what he's like, but it would make him have a major meltdown as it's something not in his routine. I just feel depressed most of the time now at home and I see my friends with to them is a normal life, but to me is a perfect life.
I could go into so much more detail but I've wrote too much already, so thank you if you've stuck with this all the way to here. I'm just looking for some help, for me, my parents and of course my brother. It's affected my parents so much, they've been so strong during this but it's gotten to the point where it's destroying them. I just need help here, something that could put my family on the right track, as I'm worried without further help my family will eventually completely fall apart.
Well, you and your parents have to expect that your brother will have a meltdown from any change, but he really needs help. Whatever he is trying to do to cope with his phobias and anxiety, is not only messing himself up, but the entire family as well. Maybe he needs some kind of psychotherapy for the OCD and phobias he has, as it's been going on for years and is affecting the entire family.
From what you say it seems that most of your brother's, and therefore your family's, problems are caused by his mental health problems, rather than his autism. While autism is not amenable to treatment, OCD and vomit phobia are. Perhaps getting your brother some form of psychiatric talking therapy, where your parents can give some input, as he is adept at hiding his problems, would work. If affordable through private psychiatry, or via the NHS right to choose scheme.
My brother is similar, high functioning autism with social anxiety, paranoia and OCD.
He will get furious at any perceived slight (and a lot of the time he mishears things), he'll demand an appology and if he doesn't get one he'll start shouting - which can go on for hours. He expects almost everything to be done for him - mother makes all his meals (even basics like porridge for breakfast).
It's a relief in one way to read your post, it feels very isolating as an experience, but also helpless because my mother has no resources available to help her. He's 32, living at home, and she's his full time carer. He's frequently nasty to her, calling her stupid, idiot if anything goes wrong - if something's 'in the wrong place'. It makes me so mad to see him treat her so badly, but there's nothing to be done.
Hello JS,
First of all, that's a hugely challenging environment for you to live in. While there are many differences in what you describe, I also have been affected by an older sibling - as an individual, in my daily living and in limits to social contract due to his presence and behaviour at home. It's just that kind of stuff that causes me to think he is probably autistic.
Pragmatically, if you are able, I suspect the safest thing for you emotionally and socially might be to move out. On the other hand, I know this is at best extremely difficult for most people your age. The reason I suggest this is that his behaviour has developed (and worsened by the sounds of it) over a number of years and even in someone willing that takes a long time to undo, however it seems he is in denial or at least places blame/responsibility on others. Presumably he would resist a suggestion of him moving out, and your parents may be unable or unwilling to suggest this. Also, if he refused the bottom line would be down to legal action, which I don't suppose would be pleasant for anyone.
For as long as you are living in the same household as him, do you have any friends at all who understand the difficulties with your social circumstances and can they compensate by inviting you to their homes regularly to socialise, or even for a few nights so you can have some respite.
Do you have any teachers/lecturers, youth workers, health professionals or similar who can listen to you and, if necessary, help you to take any practical steps to take care of yourself (whether these are smaller things or right up to finding out about having a secure home)?
I recall that some places have accommodation known as The Foyer. It is accommodation for young people who need a place of their own (your own bedroom but usually shared bathroom and kitchen facilities) and there are staff to help with life. If you did look to move out then this may be a better experience than standard homeless accommodation.
I'm not saying that moving out is a route you must go down, but am just trying to let you know about this being an option. No quick decisions needed. Just something to know that it exists if you need it in order to protect your emotional and social well-being.
I feel terribly for you. The fact that you have found this forum and posted here shows that you can be resourceful and find a way to improve your situation. Even if in a cautious way, you are showing that you will make your voice heard. This is a courageous thing to do, considering how much you adapt and censor yourself to get through daily life.
And if at any point you do meet a girl you are attracted to and want to get to know, if she's worth it then she will be understanding of your situation and respect you. Anyone who responds negatively is clearly not ready to accept you and your care and affection.
Thanks for posting here and I hope you find a way, whatever it is, that it is right for you at this moment.