my story with autism (not a pleasant read)

hi i needed to get this off my chest this is gona be a long post because i need to get it all off my chest. im gona try and make it easy to read and if u make it through and post something nice tyvm i appriciate it

im a 33 yr old female btw with autism and i live in a care home setting

i tried to catogries it into these sections..

1. at home with mum
2. school young
3. school older
4. why i never made complaints
5. cont.
6. back home with mum
7. accomadated under childresn act
8. adult care
9. prison
10. anorexia and depression
11. sectioned
12. secure unit
13. seclusion cell
14. present day
15. summery and thoughts now

(at home with my mum)

ive was brought up by an abusive mother and she would say things like 'i wish u were never born' 'i dont love you' sometimes she would get angry at me and go rly mad at me because i was clumsy i used to shut doors heavy and spill my drinks ALOT and she would yell and i could hear her get off the sofa and make her way towards me and i would *** myself and run up the stairs to my bedroom and hold the door shut to try and stop her getting to me and she would barge through and hold me up to her height by my hair and shout an inch away from my face. i dont remember what she would shout at me at the time i just was very scared and wait till it was over. she never said i love u or give a cuddle. she would stay in the living room and watch tv most the day and i wasnt allowed in. she stopped my dad from seeing me when i was 8 and i saw him again next when i was 16.

my mum and dad when they still lived together till i was 5 would hit each other and things. when i was 5 they divoreced and i saw my dad some weekends but sometimes he wouldnt turn up and i would wait by the path for hours and have my mum check to see if im still there and just say 'dont know why u bother he isnt turning up he doesnt love u'. apprently my dad said a few years ago though he would phone my mum and ask her to tell me i couldnt make it that weekend but my mum would not tell me that and use it as ammo against my dad by having me wait hours for him instead.

(school young)

i used to play on my own a lot i didnt have friends because i had severe behaviour problems because of my home situation and because of my autism. i had a 1:1 support worker at school from the age of 5 and most children would be told by their parents to stay away from me. i went to 4 mainstream primary schools before going to 2 different day units to educate me with other kids with behaviour problems. they used to have a 'quiet room' there and in the morning if i was having behaviour problems they would pick me up and chuck me in (i have paper work saying this as i would come home with bruises and tell my mum about it but i dont actually rememebr now about being took in) and i had to stay there till my mum picked me up which wasnt often till home time at 14:30 or so from 9am that morning. they had an obsivation window and an intercom and a big heavy anti rip sofa and that was about it i do remember that room though.

(school older)

so by then ive been to 6 primary schools/units i was expelled from 3 i think and the others i just got moved from. then i was sent to residential schools for kids with behaviour problems. i went to 4 in 4 years they were ok i suppose. i enjoyed being away from my mums house and with other kids there i could actually fit in with them and was accepted, sometimes the staff were nice others went but nothing terrible.

(why i never made complaints)

except one man in the 4th one was cruel to me he used to rugby tackle me and man handle me upstairs and shove me into the firedoors along the way saying 'sorry' rly sarcastically. he took my all my possessions away for 3 days once including my bedding and lightbulb for punishment. i was a very mouthy class clown kind of kid back then being 13-14 and he would say to write up an essay on the term 'respect' and he once made two girls segregated away from everyone by saying we werent allowed to talk to them and they had to sit on the top and bottom stairs in silence when it was free time between school and bed and to do everyones chores for the week. he was really weird he told me one weekend that he was sexually abused when he was a young boy.

(cont.)

i made a report on him to my keyworker for banging my head on the window and things and was told by her that since it was a friday i would have to wait till monday to put a complaint in. so i waited till monday and was told that 72hrs have passed now and you cant no longer make a complaint. all this hasnt really bother me too much to this day about that man but i included it because i never made complaints throughout my life after that.

(back home with mum)

i went back to live at home with my mum when i was 14 for about a year and a half. i didnt have any friends or any kind of life though. i used to have obsessive rituals back then like washing my hair over and over and tying my shoelaces over and over and i started diets from magazines and learnt about calorie counting and macros and i spent a lot of time drawing if i remember but that was about it and eventually it broke down too much at home and was taken into care under section 20 of the childrens act meaning i was accommodated and my mum still had rights over me.

(accommodated under children act)

from the age of 15 i went to 2 foster homes, i was arrested in my first one after 8 days for smashing a window because the other kids ganged up on me and stopped me entering the house, then another for 4 days. then a childrens home, then another 3 across the other end of the country. then another 2 back the other end again. at one of those a staff member used to grab me and shake me violently and he would rant at me for upwards of 30 mins because there was a clock there, about how rubbish a person i am and how i will never have a good life and his dislike for me. it was 2 staff members for me there and the other would just sit in the same room in silence. there was another girl who moved in for a bit who was very big and scary and he used to use her to threten me saying he will 'set her on me' if i carried on screaming. as im autistic and can scream for a long time when im in overload or upset.

on my 16th birthday i was being moved homes and when i got there the staff there and my staff had a long meeting in the home and decided i was too disturbed to live there. they then drove me to the local childrens hospital to get me sectioned, but the junior on that night decided i wasnt sectionable. so we drove back to socail services office and i sleeped on the floor with my social worker that night, and waiting around the following morning to find somewhere for me to live.

i went to a childrens secure unit for 4 months as by then i had been arrested ALOT as i used to break things and hit out at staff alot when i was frustated or upset. then another childrens home where there was another staff member who used to do the same thing rant about how horrible i am and his dislike for me.

(adult care)

i went to adult care then i self harmed a lot by cutting and overdosing i got diagnosed with eupd (which is bpd in england) i went through a few more homes. in my first one i was groomed once i was about age 20 or so. by a turkish man and he took me to a rundown place and raped me there in my bumhole, i didnt really know what was going on but he told me to bend over to wipe my bum first which was humilating and he gave me a roll up to smoke to relax me but i dont know what was in it because i felt funny. but because of my autism i am vulnerable and at the time i just went with everything he said, then he raped me in my bum and i passed out then he drove me back, but i told him to drop me a street down and i made sure his car went before i walked back because i had enough sense for him to not know my address and i also didnt meet with him again. weirdly though to this day that incident hasnt affected much. my most things affected me is emotional stuff like my mum.

(prison)

then i got sent to a home i really didnt like and ive never had control over my life i just get shipped here there everywhere and i didnt want to stay there so i thought id either take an overdose or get myself arrested to aviod moving in. i thought overdosing will be hard as i wasnt allowed out on my own so i threw a plastic vase on the side at the managers head and got arrested instead. i was told i could go back to live there if i say sorry but i didnt want to so i had nowhere to live and they didnt know what to do with me so they sent me to prison and i stayed in the psychiatric wing for 6 weeks and i tell you know the prison was easy and peaceful nothing compared to the other homes so i was well behaved there and polite and played board games and watched the olympics on tv. i was safe from being taken advantage of because there was only about 6 women living there (who were also vulnerable) with about 4 prison officers who acted like support workers so it wasnt too bad.

(anorexia and depression)

i was sent to a home then after prison and i hit depression. i didnt see any way of being happy in my life. id never been able to work, have an education, friends, love relationship, family, control in my life. i had no self esteem. i isolated myself there in my bedroom i only came out at night to get food from the kitchen. i already had sort of an eating disorder for most my life and i starved myself and also binged and made myself sick, i had bin bags of sick in my bathroom i was too depressed to get rid of. i had a list of suicide options i had researched on my laptop but i was scared. i thought if i starved myself to death it would be easier because it would just happen on its own without me actually doing it.

(sectioned)

i got to a bmi of 14.6 but i was sectioned and took to an eating disorder unit. but because of my autism it wasnt good for me i would scream a lot and wouldnt do as they said i was threatened by the other patients there it was also an addictions unit and eating disorder and general all mixed together and the others said they would beat me up. so they decided to take me down the road to the dementia ward which was locked and i was on 2:1 but they were always agency staff who didnt speak english i wasnt allowed out my room, they sat outside lookin in at me. i was allowed off the ward on the hour downstairs to the huntington's disease ward to smoke then back up again. i watched films on my laptop on dvd because there was no internet. they used to tranquilize me a lot. in the morning they would bring my meds tablets in a pot and a tray of an i.m. and i was allowed a choice to either swallow them willingly or have them pin me down for injection. and if i got upset they would pin me down and give me larazapam and hariperidol. i was given olanzapine and chrlopromazem in the morning. and quite often be given a course of acuphase (tranqulizer) as well to control me. i wasnt often able to talk or walk or have awareness to my surroundings at the time.

(secure unit)

then because of my dx of eupd they sent me to a personality disorder unit a low secure unit. i was a bmi of 17.5 ish at the time and when i was told i was going i had an hours notice i was going there and to pack my bags and comply or they will get the police to assist. when i arrived apparently all they had of me was my meal plan, that was it. they didnt get told about me being autistic but they guessed i was because of how i acted it was obvious to the ones who knew what autism was.

i ended up there for 7 whole years in that secure unit. i get sensory overload very easily and will scream, headbang, hit myself, kick walls, hit out, break things when i get wound up and i would get sedated and have my leave stopped. one time i wasnt able to leave the ward for 8 months, one because of meltdowns, or two because of short staff.

(seclusion cell)

i was locked in a seclusion cell for 6 months once, its a heavy door with 4 bolts on, ob windows, cameras in the patient area including cameras in the shower/toilet area, stripped and bare except a big blue long cube thing to sleep on. the staff area being the locked door and windows had the viewing panel for the cameras and two chairs to sit on. i used to get so stressed in there because of having no control it was so hard sometimes. i got psychotic once and was running around the room for hours repeating the same thing over and over and hitting my head on the walls and i thought the staffs glasses and earrings were spy equipment.

if i wouldnt stop screaming they would unbolt the door and around 8 people wearing blue gloves would walk in and surround me and they wouldnt talk they would just take me on the bed tummy side down and pull my pants down and inject me they all walk out and i would hear the sound i hated. the 4 bolts being inserted again. and i hated being sedated because it felt violating.

one time i was so desperate for human contact i was so lonely i chocked myself on toilet roll till they opened the door to get it out, then i ran out to the staff area to wrap my arms and legs around an older female staff who was nice to me and i was crying and so upset i said over and over again 'please hug me please hug me' and i was removed from her legs and they locked the door again, they said they wouldnt be opening it for a few days until it gets reviewed by the doctor as it was 'violent behaviour' because i grabbed her. if i wanted anyting they had to open the door for like meals or meds, i had to sit crossed legged agaisnt the back wall with my arms folded behind my back and if i moved at all they would slam the door again.

i was once restrained by a lot of male staff and they all were tackling me and pulling me to the back and shouting at each other to shut the door or pull me back again so they could bolt it as i used to try and stop them shutting the door. i didnt feel like i was treated as a human at all and i was very lonely and longed for comfort and love and a feeling of safety. there was a couple of staff who broke the rules and they would come in and cuddle me or some would sit on the floor between the door and leave it wide open and play cards with me, and it felt like a glass of water in a desert those times. then the horrible nurses would ban them from working with me because of crossing boundaries, disobeying hospital rules ect.

the practise nurse at the time used to act motherly to me, i was seen by her a lot because of my eating disorder, she would always give me a cuddle before she left, and i would ask for her a lot. but it was put in my care plan that whenever she visited we had to be watched and for no physical contact of any kind to be given to me. i used to rely on her a lot in there as she gave me comfort and it was took away from me. my named nurse at the time as well once decided at about 11pm one night that i had to have the overhead light on at all times 24hrs a day. this came out of nowhere and i have sensory issues, so i covered my face with a blanket as its painful for me and causes overload. but they said if i abuse the blankets to obstruct staffs view they will confiscate them off me. i think after a couple of hours they said i could have them lowered a bit, then a couple of days later it was forgotten about. but they would just change rules like that, and i had no access to the light switch at all and just made me so frustrated and if i acted out because of it i would just get sedated. i was just powerless.

(present day)

present day, i left that secure unit last year to a place i used to live in before as a young adult. i have worse sensory issues now, i cant leave my house without earplugs and sunglasses even then i have to put on noise cancelling headphones on top of the earplugs, i was prone to being sensitive to noise and light before but since leaving that secure unit it is a lot worse. i have depression still. i feel isolated and lonely, im 33 now i feel like im getting old and i will never have love or a feeling of love and family and friendship. im incapable of doing much due to my depression and autism. i stay in my house on the internet most the day or sleep. i sometimes do my food shopping, which is a challenge for my depression and sensory overload. i think about suicide sometimes. i had an assessment for therapy but its a 18month waiting list, and im not even sure its going to help me. i feel hopeless. i have 24hr 1:1 support worker though but i tend to still isolate myself i find it hard to connect with people or trust people. theres a few i like and we watch youtube together or go out for a bit round town if i'm feeling up to it that day. but i've lost interest in most things now. i stay up all night and sleep through most the day to avoid things. i have no ambitions i just feel like everything will be a negative experience and i will fail and im too anxious to try i panic a lot about things and how i cope is to just avoid it in the first place. i have a lot of anger about my past and i turn bitter and negetive about it a lot. the managers have mentioned day centres to get me out but i cant face it, i convince myself of all the bad things that will happen if i go. i also cant tolerate groups of people and enviourments i'm not in control of.

(summery and thoughts now)

thats it anyway i sometimes feel like people dont understand me and i also feel like im left for doom now. i feel like social services and adult care dont expect much of me, i dont think they mind my current state, they dont mention it much, the support workers dont have much knowledge of mental health, they have basic training in autism and first aid ect. i dont have the guts to suicide. im scared to. i feel trapped living this life not knowing how to make it better or feeling equipped to, and its either live this life or suicide. so i live this life. but im eventually going to be a 40 year old then a 50 year old still in this situation and it scares me and i feel hopeless.