Living in an institution

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I live in an institution for people with an intellectual disability. In my country there has been discussion, they closed down some of the large institutions, people with ID were supposed to move to houses in the cities, into society. That is great for some, but not everyone can, some are unhappy or don't dare to go out anymore. As for me, I like being put away in the woods!

I could never live in a normal street in a normal town, I would get into trouble because I tend to run away, I make noises and behave weirdly (screaming, sitting down on the middle of the street, hitting myself). When I do this here, there is always someone who finds me, and who brings me home. They all know me by now...

Are there more people on WrongPlanet who live in residential care institutions? What are your experiences?

Welcome to WP!

I don't live in an institution at this time. I live on my own. I'm thinking of doing so once I'm in my mid-80s. I don't think that regular old folks homes are equipped to care for residents with any type of autism.

I lived in various institutions as a child. I do miss the structure.

Welcome to Wrong Planet. I don't live in an institution, but I live in the woods and I love it. I am glad you like your home.

I live in my home in the city and that is very difficult for me. I have meltdowns all the time. I wish I could be tucked away in the woods. I would love that. I have never lived in an institution but i have visited some and they were horrific. I am so glad that yours seems nice and that the staff know you and care for you. That is really good. You are very fortunate.

I live with my roommate because I couldn't take care of myself on my own, but I think I'd like living in a place like you describe. Even as a kid I had fantasies about living in a cabin in the woods.

I live in a building where you have to either be over 62 years old or 55 & disabled. I'm in the 55 & disabled group. You have your own apartment, but of course, once you're outside of it, you have to follow the rules. It's not a bad place to live although it does get frustrating sometimes that the city I'm in is kind of in the boondocks where WiFi is hard to get.

Hey Robin, nice to see you again.

I would really love to understand why you do these behaviors. Can you explain to me why? These types of behaviors are common among people who are considered LFA. It is very documented that Autistic people do these things but no one ever says why and it is super important that we understand why.

I scream and hit myself when I am having a meltdown from overload. Either sensory overload or if I am in a conversation with someone and I cannot make any sense of the conversation and the conversation itself is overloading me. That is when I headbang. I scream from sensory overload from sounds mostly. I also try to flee from the area if I am being completely overwhelmed especially from sounds but I don't know if that qualifies as running away. I have never done anything like sitting down in the middle of the street though. But there are times when I am extremely tired and drained, often from being overwhelmed, I will sit or lie down in places that people don't usually sit or lie down just because I am so overwhelmed that I can't stand up anymore.

Why do you do those behaviors? I believe that classic Autistics or LFAs have much more in common with HFAs than people realize. I would love to hear from classics and LFAs directly to see if that is really true.

I live in an elderly/disabled building with my husband, we have our own apartment and it's independent living but it has some adaptations like emergency pull cords and handle grips in the bathroom. I can survive on my own but my husband used to live in a group home and he can't quite make it on his own. My husband hated the group home because he didn't like all the rules.

While I do miss the structure, I do not miss all of the rules. I understand that the rules are an integral part of the structure, but they also limit independent pursuit of interests. It is for this reason that I work so hard at independent living. But on trying days I miss the predictable structure of the institution.

I do the things that Arctic Skua does as well. I don't sit in the middle of the street, but when I get tired I tend to plant myself in an out-of-the-way area of my immediate vicinity. I've sat on sidewalks, against walls at theaters and museums, on low shelves in supermarkets, etc. This stems from physical fatigue that builds up very quickly and with sudden onset as a result of the culmination of sensory overload, social exhaustion (being in close proximity to other people even without interacting with them) and the physical fatigue of walking/moving for long periods. Once I sat in the middle of a parking lot because I was watching a Canadian goose go about his business and I love watching animals. I've sat on peoples' lawns and beneath trees to watch squirrels as well.

As for the self-injury, head-banging, etc. this happens as a result of stress, anger, frustration or meltdown, and it's a way of releasing internal pressure, like the emergency release valve of a pressure cooker. When I get upset or agitated, my insides feel tight and knotted, and the spaces between my organs feel like they're expanding with pressure, and the only way to bring the pressure down is to yell and scream and hit and bite myself, or pull my hair while kicking, hitting and throwing things. I'll also try to run away both to escape the situation, and because running is high-intensity movement that also serves to decrease the internal pressure.

I've run and wandered away when not in the middle of a meltdown too. Sometimes I see something interesting that excites me and I'll run off to go and look at it without remembering to let whoever is with me know where I'm going. Sometimes I can sense myself getting overwhelmed and reaching meltdown point, and I'll run away and try to find a dark quiet place to sit and cool off. I've also run off just for the sake of running. I like how running really fast makes my body feel, it's a deep-pressure sensory thing. The problem is that my sense of direction is so bad that I've gotten lost before. One time I wandered away from a party at a restaurant that my office was holding because the noise and lights were overstimulating. I walked around the city for close to an hour, and when I got back, my friends were on the phone with the police because they were freaking out that they couldn't find me.

I make a lot of strange noises when I'm excited or distressed as well. I make humming sounds to indicate stress, frustration or excitement, usually while simultaneously bouncing, rocking or flapping. I also make odd noises just because I like how they sound in my ears and feel in my throat. Sometimes it's just random noises, and sometimes it's words or phrases that I'll repeat out loud to myself over and over again.

I repeat phrases over and over again as well especially when I am in my younger personas

Hello Skibum and StarTrekker

I do not really understand it myself, but I often find myself hitting myself on the head when I'm happy, scared or sad. I don't really know the difference between emotions, my psychologist is now trying to teach me to discern "good" and "not good", and that's difficult. But the hitting is a problem, I have already teared my eardrums. I also poke myself in the eyes with my fingers and scratch my face.

My weird behaviours just seem to happen. I guess I'm not thinking clearly, or I'm scared. I cannot control it, I just react to what happens around me, e.g. lights, sounds, and inside me, like thoughts, or feeling hungry and not understanding that. I also have this: whenever I see an open door, I HAVE to run through it. Maybe that is because I have been locked up many times in the past.

I see many autistic people around me, who do things like this, but they cannot explain things because of their severe intellectual disability.

You both said you do similar things when you are having a meltdown. Can you explain to me how you stop doing it? I would like to be able to stop it myself, not to be restrained by carers. (Or worse, to be to be taken by the police, as has happened several times when I had wandered off.)

Unfortunately I can't stop. Like you, the only thing that makes me stop is being restrained by friends or caregivers. I've had many run-ins with paramedics, and at least one with police. If I'm left alone, I'll just keep slamming my head on whatever surface is available until I'm too exhausted to keep going. I have a faint scar on my forehead from the time I slammed my head into a file cabinet at work and cut myself on it. I also left a dent in the cabinet. During times when there was no one to restrain me, I've caused bleeding to my head by the sheer repetition of the blunt force. There has been blood on walls an carpets as a result of this.

My therapist is trying to teach me to use yoga to calm myself down before I start the self-harm. It's in the beginning stages, and it's very hard, but I really hope I can get good enough to make it work, because nothing else does.

Now that I am an adult I will be moving into a residential care facility. I am used to being institutionalized so to speak. School was for those with special needs. I'm never left unsupervised. I don't go out anywhere by myself.