not really sure how to start this as i’ve never posted anywhere about these things, so i guess i’ll just give a small rundown!
my 22 y/o younger brother was diagnosed with autism, mild learning difficulties and dyspraxia when he was 18 and in college (he struggled with the same issues throughout his whole childhood and teenage years but we just never got to getting the diagnosis until the college pushed for it). he’s highly intelligent but his EQ score came back almost non-existent, i think he scored something like 4 — this is something that’s only worsened with age, too.
since he finished college 3 years ago, he’s done nothing; he can’t work as his autism is far too bad (i’ll get more into that in a bit) and he lacks any social skills whatsoever, so every day is just spent at home, much to the chagrin of me and my mom. he doesn’t drive (has no interest to), has no friends, doesn’t go out unless it’s with my mom to the shops or the gym. his hobbies are common for a 22 y/o — video games, youtube, fitness (specifically boxing which seems to be his newest special interest) — but they frequently seem to cross the line from healthy to unhealthy. for example, he’s just spent almost £400 on fitness equipment for the house, despite us living in a tiny terraced house that is not big enough to house any of what he has bought. he’s also constantly trying to ‘better his health’ but in the most unhealthy ways, like buying supplements that he doesn’t even know what they do or cutting things completely out of his diet (which my poor mom has to deal with as she does all of his food and drink for him). his most recent one is an unhealthy obsession with microplastics: he refuses to touch or consume anything that is housed in plastic, even if it’s temporary. £26 on glass bottles of water later…! his spending, although generally managed by mom, is ridiculous and the arguments we have with him over it are so exhausting and frequent that we usually relent because it’s just the easiest thing to do. saying no to him starts an argument, and starting an argument with him often ends in tears on our end or angry outbursts on his.
truthfully though, there are a few other things that have been really difficult for me and my mom recently. one is his stimming/tics/habits. he picks them up excruciatingly quickly, always has done, but when he was younger they were primarily physical ones that affected only him (for example he would shake his head constantly because he had long hair, and this lasted from around age 13 to age 16). he was, and is, hyper aware of his habits and has expressed how he wishes he didn’t have to do them which is always upsetting to hear, but unfortunately that doesn’t really help us live with them. let me preface this by saying: my mom and i are extremely patient and put up with probably way more than a lot of people we know would, so this is in no way us being short-tempered or unreasonably snappy! however, there are only so many things we can take.
for the last 2-3 years we have had sleep disturbance from him almost every single night in one way or another. whether it’s…
- playing his pc until 2am (one of his habits is picking his mouse up in his hand and dropping it down loudly onto the desk repeatedly, irregardless of whether he’s playing a game or not);
- scripting whatever he is watching (this can go on until 4/5am sometimes, and in severe — but increasingly more common — cases he won’t sleep at all and is still awake at 9am scripting and having conversations with himself about what he is watching);
- making his screaming-level vocal habits (again, this can go into the early morning without a break at all and range from high-pitched squealing and laughing to shouting out a word repeatedly, as well as ‘coughing’ and spitting) that either keep us awake (because, depending on the specific habit, they can be both constant or sporadic and make us jump so we can never fall asleep) or wake us up throughout the night by making so much noise;
- doing physical habits that make noise (for example, he slaps his stomach really loudly at random points throughout the night which wakes us up but also does inconsiderate things like throwing his drink cartons in his bin, making huge noise as they ricochet off the wall)
nothing he or we have done has helped him. he can’t follow any routine despite how easy or rewarding it could be for him (we all realised this after many failed attempts), and anything he does do as ‘routine’ can work one night and be fruitless the next. we even had a family member in the US send some melatonin over for him to help with the sleep problems as we were at our wits end and the doctors weren’t willing to help us at all as he was diagnosed privately, so any prescription has to be done by the practice that diagnosed him; we are a low-income household (i have several physical disabilities as well as mental health problems so i‘m not able to work, and my mom can only work part time as she needs to care for both me and my brother as well as my grandmother) so we really can’t afford to spend what the practice want even just for a telephone call, let alone prescriptions — we had to beg, steal and borrow to get his diagnosis paid for in the first place. the melatonin works sometimes, does nothing other times. we’ve spent the last month redecorating his bedroom for him because he said he would sleep if he had everything he needed in his room: silk sheets, red light therapy, a double bed … but alas, here i am at 3am being kept awake by his vocal habits that have been ongoing for over 4 hours already, 3 hours after he took a melatonin!
we really can’t do this anymore. every single night i sleep with 2 different videos playing in my room on high volume to block out some of his noise, sometimes i have to put airpods in, earplugs or — on nights where my ears are bad or he’s exceptionally loud — i have to wear noise cancelling ear defenders. IN BED! it seems like a curse that one of my medical conditions is an ear condition that is extremely reliant on a good nights sleep, and if i get broken sleep for a few days in a row, my condition flares up so badly that i cannot walk and i lose partial hearing. (i’m on medication but if my sleep suffers too badly, it renders the medication useless… it’s the same for my chronic migraines which are also medicated.) on top of that, i have fibromyalgia which again flares greatly if i can’t get proper sleep. so, it’s really not just a case of being a bit tired and grumpy when i wake up — it’s that my physical health is so poor to the point it can immobilise me. all because my brother is so disruptive ALL the time.
there are other things too, as previously touched upon, but i’ll keep them brief as this is an essay already.
- he’s got a very narcissistic personality and he honestly believes that he is some ‘greater being/god’ and that everyone else is just ‘weak peasants/mortals’ that are lesser than him. this includes me and my mom, and he constantly makes us aware of the fact that we are nothing and if no importance whatsoever.
- in that same vein, he’s extremely offensive in what he says and is such an old-fashioned male chauvinist in his views. again, he believes that because me and my mom are ‘only women’ we are lesser beings and are stupid and worthless. he’s constantly telling us that we know nothing, that we are dumb, that we should do everything for him because that’s the only thing that we are good for. he also can be physical with us — he shoves us out of the way probably 10 times a day (my mom suffers with this much more than me and it infuriates me so much to see), hits us a little too hard when he’s ’playing around’ and calls us weak if we tell him it hurts. (he’s 6ft tall and 100lbs so we are probably not overreacting here..). we are also flinching constantly because he likes to make us flinch, whether it’s by pretending to hit us in the face or throw something at us (it’s always ‘in jest’ though so it’s never worth it to say anything).
- he spits everywhere. it’s a habit, we know this, but it started when he got a chest infection last year and it just hasn’t gone away and it is probably the worst habit he’s ever had (and he’s had a LOT). he spits in between words when he’s talking, when he’s in his room — so much so that he made his wall mouldy from how much he had spat over time, when he’s in the car he spits out the window and all inside the car. we get covered in his spit constantly, we have to make sure we eat when he’s upstairs so he doesn’t come down and start spitting everywhere… this one is so hard for us because we are a family who despise spitting — even he has the nerve to say people who spit are disgusting! not to mention how unhygienic it is. his immune system is incredibly strong but unfortunately mine isn’t, and i can’t count the amount of small illnesses i’ve had since he’s started this habit.
- he controls what we say and do, and where we go both inside the house and outside. we are very understanding of things he doesn’t like because of sensory issues but some of them affect us so much on a daily basis that our life is restricted greatly by is. for example, nobody is allowed to burp or fart around him — this is a HUGE no go. we also aren’t allowed to use our downstairs bathroom if he’s downstairs; not allowed to even have the door open at all otherwise he completely freaks out. so if he’s downstairs (even if he’s in another room with the door closed), we can’t use the bathroom, and there’s times where i’ve needed to use the bathroom desperately (i suffer from chronic gastrointestinal issues, too) but have to sit in pain until he is ready to go upstairs because i’m not allowed to go until he does. and believe me, he doesn’t rush even if he knows i’m in pain. my mom also can’t go out without him, almost like he has permanent FOMO. she never gets a break from him except for when she works, and honestly i do not know how she deals with it.
- it’s his way or no way. he comes down for dinner, immediately takes the tv remote and switches off whatever we were watching because ‘he has to watch something while he eats’. then, if we don’t involve ourselves in what he puts on, he throws a slew of insults at us. constantly being told how stupid we are, fat we are, useless we are. he’s always right and we are always wrong, and that never changes. he interrupts and talks over us and gets what he wants because he exhausts us by mentally digging at us and not relenting even after he has been told no. if he doesn’t get what he wants, he gets even more spiteful and verbally abusive and it’s just absolutely not worth it most of the time, so we relent and lose out. he’s inconsiderate (which makes sense, EQ is non existent) with everything, like he will knock a pot of pepper over in the kitchen and just leave it there and tell us it needs tidying up, or he’ll break a plate by launching it onto his floor and won’t tell us until mom finds it buried under clothes when she’s tidying his room. he gives so many demands and doesn’t have a shred of consideration for the fact that my mom is the only person keeping us housed and fed and happy, as well as micromanaging 4 different people’s lives including her own + our senior dog who also has extreme anxiety issues and needs constant attention, too.
he never used to be this bad and we just don’t know what to do anymore. we are exhausted and so downtrodden, i’ve been suicidal because of how he treats me and i know that my mom struggles just as much if not even more, but thankfully she is hugely mentally stronger than i am (i guess because she has to be) so she usually just takes it and tries to keep moving towards — recently though she’s even been in tears because of how he treats her and the house (he’s very destructive, made holes in walls and doors before and leaves a mess everywhere he goes. the month she tirelessly spent single-handedly doing his bedroom for him, in between hospital visits for my grandma and working as much as she can to make ends meet? he said all his sweet thank you’s but after less than 24 hrs he had splashed food up the walls she had painted, spilt drink over the carpet she had scrubbed by hand, broken the new shelves she put up for him, and his only response was ‘oh… sorry’). i can’t see her cry because of him again and i can’t cope with my health deteriorating because of him.
i don’t suppose anyone knows where we can go for help, or what we can try? we’ve exhausted all of the places possible, spoken to countless doctors and organisations, but because he’s not willing to bend even a little bit, we keep hitting brick walls. it took him long enough to admit that there was a problem and get his diagnosis, and every night he takes melatonin it’s a battle to get him to swallow his pride and just take one, so getting him to get any further help is… almost impossible. nobody will speak to us unless he speaks to them, but he’s reclusive and antisocial. it just will not happen and we don’t know what to do.
thanks in advance and sorry for the insanely long rant but i can’t deal with it anymore and i don’t know where to turn. my mom and i need our lives back.
