Independent living difficulties

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First of all, independent living is a myth. Nobody lives independently. There are just people whose needs are fulfilled automatically by society (nondisabled people) and those whose needs are considered extra (disabled people). 

Oh and also I'm not technically AS. My diagnosis is autism. I reject all functioning levels but doctors sometimes call me severe or LF regardless of my wishes. 

The following is a modification of a message I posted on another thread. So the parts of it that don't make sense are from that thread. I added a bunch too. These are all at my best -- at my worst I can do none of these things for myself at all:

I want to apologize for the length. I was trying to answer Horus question of what I meant by self care and similar phrases. And somehow it turned into the longest thing I ever wrote on the topic of which things I have trouble doing. Problem is I've got no control over the length of what I write. This took hours and now my brain is buzzing. Anyway sometimes I get this detailed and the only alternative is to not say anything at all. This is the first time I ever wrote out stuff I have trouble doing so maybe it will be useful for something else even if it's tl;dr here. And also I started out going down a list of ADLs and IADLs (activities of daily living and instrumental activities of daily living) and then went into the sections of adaptive skills on a test I was given once where someone who knew me had to rate my unaided abilities on a test. Hopefully some of it's useful for someone because I worked really hard on it. No energy left for revising or anything else. Brain going blank. So will send this now. Eek. 

I have no usable speech (when there at all words come out of my mouth with no relation to thoughts), used to have some but now it's none. Serious trouble both starting and stopping conversations. Cannot find words unless the words are triggered by something, so I may babble on about cats while I fail to say I haven't eaten in three days or have symptoms of a medical emergency. Have nearly died several times because of inability to communicate with doctors, even at the times when I sounded eloquent on whatever topic had triggered me to type about it. This translates to massive communication difficulties in all possible situations, either because I could not find any words or because the ones I found weren't the most obvious needed words or had nothing at all to do with my thoughts. 

Receptive communication is even worse. Much of the time I live in a state where language may as well never have existed (more than just an auditory processing problem). People's speech sounds just like noises. I have to work hard to understand. Even at best my receptive vocabulary is much smaller than expressive, the opposite of most people. I try to pick only some words out instead of all because it's easier to process. Go through periods where I either can't read at all or can decode but not comprehend. 

I have the same problem with moving and memory that I have with words. I can only do so when something triggers it. I can only a tiny bit do so when I have to do it on my own power rather than in response to an internal or external event outside my control.  In the words of a handy chart I read (slightly modified) I have trouble {starting, stopping, executing, combining, switching, continuing} things like {posture, actions, speech, language, thoughts, emotions, perceptions, memories}. See more information about this at Movement Difference: A Closer Look at the Possibilities. I in fact can barely if at all do any of those things unless the action is either automatic/involuntary, or triggered. 

I need help bathing. Both with initiating, and with the physical tasks involved. At my best I ever functioned I would sort of get in the shower and put soap and water random places and get out, and if nobody helped me initiate I would simply not do it even when I couldn't stand my own smell. But that was a long time ago and that is no longer possible even at my current best. 

I can only brush my teeth if someone hands me the floss, toothbrush, and mouthwash in order. And even then my body often forgets what I'm doing and starts chewing on the brush or moving the flosser thing randomly. The presence of the objects triggers some action, though, and I would never do it at all despite wanting to if nobody handed it to me. Just telling me to do it doesn't work either. 

I pretty much never wash my hands even though I know that's bad for me and others. They get washed on bath days. Same with washing my face and other forms of washing outside of baths. I keep my head shaved for many reasons and one of them is the trouble of hair-related hygiene. (Note:  This year I'm trying to grow it.)

My ability to dress myself is variable. I need help starting off. I can often do at least part of it and then get help with part of it. At my best I can do almost all of it except starting, and spend ages before changing my clothes if ever. 

I can nearly always eat, but I need it started off for me. When I didn't have services I starved because even with help from friends it just wasn't enough for me to be able to eat enough. Even two feet from food I would fail to recognize that there was anything behind a cupboard door, or else have serious trouble finding my body (made worse by having no help with anything at all -- I also couldn't bathe, clean my apartment, use the toilet in the toilet, just a mess). I can also have trouble with chewing and swallowing and often forget how in the middle of eating and have to find exactly the right way to trigger a swallow. Or else choke and aspirate. 

I can use toilets but often can't get to them. I used to have frequent incontinence because of both inability to get there and inability to recognize the signals but I have urinary retention now which actually helps me keep it in but then I can't get it out and I get infections. I also have enough trouble cleaning afterwards that such cleaning is a daily part of the bathing routine, and still isn't quite enough. Without services I used places all over the house and yard. There was only a four-year period of my life where this wasn't a problem. I've been taught to be embarrassed but... everyone does it and lots of people have trouble doing it. (Note:  I now have an implant to help the retention and am back to the old trouble.)

I have a lot of trouble getting around the house without help starting it up (there's a pattern here). In my last apartment I had a circular route I found easiest to walk around the apartment. But then I had trouble getting off of the circle and going wherever I needed to. It's easier in this apartment but still a problem. I can't just get up and go to the fridge unless someone helps me start or I wait for hours until the right time. Getting in and out of my wheelchair and other major transitions are also part of the problem. (Sometimes I can't get into my chair without a lift, which can either be freezing up from the autism-related movement disorder, or going limp from a physical problem). I also even can have trouble with moving around sufficiently while sitting in one spot, where people have said they left me in one spot and came back the next day and I haven't moved. 

I also can't take medications without help and need them ground up because of the swallowing trouble. 

I can't plan or prepare meals, period. I can sometimes bake, and when I do it I do it really well, but someone needs to be there to keep me from getting stuck. I can't cook to save my life. I ate one meal all the time for months, switching to another one and doing the same, until another person intervened and started planning my meals not just cooking them. Basically this is something I just can't do. 

Same goes for housework. No matter how hard I try, cleaning, laundry, taking the trash out, etc. Is way too complicated for me. As the utter and total filth I used to involuntarily live in testifies to. 

I can't drive. My visual perception is way too messed up for that. I can't take public transportation (at my best I only did one route and I am not at my best, as I learned after having the cops called to deal with shutdowns and meltdowns and being utterly and totally lost). I can't arrange the rides with the paratransit service I do use. 

Which is partly because I can barely use the telephone. It's too much to juggle with a communication device. I used to be better at this but now it's just a mess. I have a cell phone but when I use it I have to keep it really short because of the difficulty involved. Or just answer yes/no only. 

I am nowhere near organized enough to make and keep appointments. Someone else helps me with that. I have never had this skill. 

I also need help budgeting. Even with help it keeps falling apart due to lack of ability to communicate between me and staff. It's really been a nightmare trying to get it working. 

Tracking medications is another thing way too complicated. There are a lot of them and they all have different dates to call them in and instructions and stuff. Fortunately my case manager is incredibly organized. 

The adaptive skills I was tested on at another point were communication, functional academics, self-direction, social, leisure, self-care, home living, community use, work, and health and safety. 

I have described communication fairly well. I have a few good skills but no ability to direct communication on my own so I actually scored as low as possible because all the examples they tested for required my worst areas in communication. 

Functional academics means the ability to apply academic knowledge in everyday life. I didn't score well because I'm not good at applying any sort of knowledge for daily living situations. I can know a thing, but my ability to deliberately access the knowledge, and my ability to deliberately apply what I have accessed, are not so good. 

Self-direction is another thing I bottomed out on. It means the ability to... initiate, plan, and all those other things required to go from "I want to do this" to "I am doing this." As described earlier I have almost no skill in this area. I can only do things (even internal things like remember) when triggered, not because I mean or want to do them. And that trouble moving from intention to action is what they mean by this skill. There are lots of skills you have to have in order to do this and I am in awe of people who can. 

Social... I'm autistic. My only friends are people who are either autistic themselves or willing to bend really far to meet me halfway. And I have trouble with most of the usual social skills. I have a few good social skills but they are atypical enough that they're never measured on assessments. 

Leisure. Lots of things I would like to do but that problem with self direction gets in the way. I do whatever is immediately possible right in front of me. Typically this involves things people don't consider leisure skills such as feeling the texture of a remote control over and over. 

Self-care I've already gone over in way too much detail. Same with home living. 

Community use means the ability to use various resources outside your home. Again, for reasons already discussed, not great at it. 

I've never been very successful at holding down a job outside of really specialized work training programs, and that's something I couldn't do now. My tiny amount of volunteer work is so tiny it doesn't even remotely qualify as part time. 

Health and safety. I am terrible at communicating anything health related resulting in frequent close calls. I need help to do the sort of health maintenance things I'm supposed to do. And my safety skills are so awful they frighten me. I have let strangers walk into my home and inspect the thing. I didn't catch on to the danger of a "will you come see the toy in my car" scenario in my twenties until long after it had passed. I walk into traffic without meaning to. I've had my automatic motor stuff get so out of hand that I've opened car doors on freeways. And I can't generally discern a lot of unsafe situations, and even when I can I can't always act on that knowledge or retrieve it at the right point in time. 

So basically, I at the very least need help with all ADLs, and flat out can't do most IADLs, and did really badly, nearly as bad as possible, on that overall test of adaptive functioning. And I have gotten much worse at it since then. Some of these are things I've gotten worse at, but frequently the trouble was that something didn't seem quite as bad as a child as it did when I grew up and never learned much more. 

In addition to this, I self-injured, especially head banging, in really severe ways for awhile. I still do it sometimes but it used to be nearly constant. 

There are a few things that combine to make me suck at these things: 

The gap I keep talking about between intention and action. The gap has only widened with time and involves movement, language, memory, thought, etc. I have trouble with starting, stopping, switching, combining, etc. these things too. Like I said earlier. 

The way I perceive the world. I always start out from a point where language and standard category might as well never have existed. The world is just patterns of sensation. I am really good at navigating a lot of the world in that mode. But it makes me have trouble with "simple" tasks like language, recognizing where one object stops and another starts, recognizing the objects themselves, etc. It's a whole different way of perceiving and takes effort to perceive things anything like normally. It makes it so if I feel a cabinet door I don't necessarily know to look behind it. I access language through a variant of the pattern finding thing. 

I also have very confusing senses. It can be like a swirl of different sensations. It's hard to describe. 

I don't know the exact neurological basis for this stuff. I just know I've compared with others and this is what we noticed we had in common. 

I also want to note after that litany... I do have things I'm good at. They're just not that. And even when I am good at something in one context doesn't mean I can apply it deliberately or in another context. And I hope I answered your question.

When I was trying to do many of these things for myself, a typical day would be spent trying to locate my body in the swirl of different sensations. My body would inevitably either be frozen in place or else running around the apartment or sitting and moving repetitively. Then I would begin trying to gain voluntary control over movement, which would mean not one big easy movement but lots of little movements seizing control over one little piece at a time. I often needed help just to do that. I would forget that anything I couldn't see or feel existed at all - object permanence is itself impermanent for me. Carrying my body through even simple steps of tasks was grueling and I would often get the steps in the wrong order. Maintaining idea-thought was also hard and I kept going back to not thinking consciously at all but just being aware of my senses. And combining thought, perception, planning, and action was just too much when each of those things was several work-intensive steps itself. 

So I would not eat or drink much more than minimally. I would use the bathroom in random places. I would randomly move all over or else sit totally still. I would be unable to find my way around the house. Certainly unable to clean. And the swirl of sensations thing was more extreme than ever. All of these things got worse individually because of the effect of having to work on all of them at the same time. 

One thing I have found true about getting help is that the more help I get, the more I am capable of. This is because each thing I have to do adds strain on my ability to function. At my very best I can do one and a half tasks a day (like drinking enough water and taking half my medications) and an ordinary day is filled with far more tasks than that. Taking care of those tasks for me leaves more of my brain room to do things. 

I get services from the state agency for developmental disabilities. They are obviously pretty intensive. 

I think the problem is having enough motivation to look at it. It helps if everything written on it is a thing that you really want/need to know on that date (if you keep reading things that don't really matter, you'll stop looking at it). But equally, if there's almost nothing written, it'll be hard to get into the habit of looking at it. So to get it to work well, you probably need a reasonable number of important appointments and deadlines in your life.

I find the "one-page-per-month" calendar suits me best. Seems a good compromise between being able to see my future plans at a glance, and having a reasonably large space to write in. If I have to write more than just "gas £73.20" then I add an asterisk and continue writing the details on the back of the page. I also jot down stuff I want from the shops on the back page, and refer to it every time I go shopping, and that helps to keep me using the thing.

It's taken me the best part of a lifetime to get that far. I used to try very hard to "get organised" but I'd always end up designing a very intense, cumbersome system that aimed to make my entire memory redundant, and of course it never really worked....I'd just become a slave to my own system, and would eventually abandon it. So I'd maybe write "pay mortgage" on the correct day of each month, and then agonise about how I was going to remind myself to repeat the exercise every time I got a new calendar. Aspie perfectionism I guess.

I feel the same way.

ToughDiamond: I actually just started using one of those calendars. I am putting on it due dates and appointments, and if I have none of those for a day, I'm putting on it one or two small tasks ("take down packing boxes" rather than "clean the living room") that I want to accomplish that day. It's working pretty well so far, but this is only the first week I've had it.

I always intend to make myself task lists and get organized so that I can accomplish things, but getting organized in the first place is often an impossible task.

Yes it's a good idea to keep the tasks clear, finite and specific. I used to write stuff like "think of some really good songs for the new act." Tall orders aren't likely to get done.

These days I just try to make a bit of a difference, and I sense trouble if I find myself entering my whole life into an alarm watch or something. I try to remember that the organisational things are for me, not me for the organisational things. So it's just a little bit of organisation here and there for a few minutes.

If anyone could use support in order to live more independently or help learning skills that can help in this area and is living in southcentral or southeastern Pennsylvania, feel free to PM me.

I work for an agency that offers these kinds of services and am happy to provide info on what resources are available and who to call to apply. The caveat is that I'm only knowledgeable about programs in my local region, though, and can't promise to be able to help anyone else, unfortunately.

So, I know it's not much help to the majority of people here, but thought I'd post it just in case.

...Where do I start? I need to get a huge monthly calendar to know what's going on. The little daily planners don't work for me; too irritating. besides that:

Meeting new people:
-don't know where or how to do this and going away to college did not help in this area at all
Bills:
-My mom helps me with that but I always forget the due dates or to actually pay them.
-forms, papers, tax stuff, insurance/doctor forms etc get to be confusing.
Food:
-never know what to buy or what to eat. I usually forget to eat unless I'm extremely hungry where I get really lightheaded and nauseous. I also have food allergies (soy, peanuts, etc) and an odd sensitivity to sugar, reading ingredient labels at the store just gets frustrating and I give up and forget to actually buy food. Eating most foods makes me feel like a hived whale so I just get confused and make pancakes all the time.
Motivation:
-exercising
-cleaning (tidying I can do, but actual mopping, vacuuming, scrubbing I give up halfway through and fall asleep)
-allergic to dust & mold but can't find the effort to dust effectively on a recurrent basis
-to cook or prepare 3-5 meals on a daily basis
-to go out, other than for class or to run an errand

Also, time management and knowing when to buy clothes, and other types of girlish maintenance I lack the aptitude for. Basically it's things that need to be maintained regularly that are difficult, like paying bills and planning meals. I would gladly pay someone to help me with all of that stuff, and while they're at it they can just arrange me a marriage to a guy who is good in the areas I'm not lol...

@ the first part; I have the EXACT same problem. I don't see it going away anytime soon, since no one can give me any answers (they just "know" how intuitively, therefore cannot explain it).

@ the second part, lol me too, preferably Tim Tebow of the Denver Broncos =D

I have difficulties with remembering to do important things such as bathing, going to the restroom when I feel the urge, taking my medication on time, locking the doors and windows when I'm alone and turning things off when I'm done using them (which is why I can't use the oven). I'm bad at budgeting money, preferring to spend it all at once on "wants" rather than saving it or using it on "needs". I'm very gullible and naive, so I could easily fall for a scam or lie and be duped out of my money. I'm also completely oblivious to my surroundings no matter where I am, so it wouldn't be difficult for someone to sneak up on me, kidnap me and/or assault me.

Thank you Anbuend. That was very interesting, informative & appreciated.

You write beautifully. You write real and keep it from the heart, which is even more important!

I might have some of these issues, to a much smaller extent. I commend you on your struggle and your sharing of that struggle with us.

I wish there were classes on this stuff. I've asked people how they do it too, and I also fail to get answers. lol, an arranged marriage would be such a relief. Shame it's frowned upon in America...it'd be great, you get Tebow and I get Rondo from the Boston Celtics lol

Thanks. I am still stunned I wrote all that in one spot.

I've loved living alone the last couple of years.

The only part I don't enjoy is the emotional eating, as there is no one around to make you feel guilty. Also being really lonely. No one around to chat to, apart from my dogs.

Also getting scared at night when you hear sounds outside, but I have two large dogs so they'd bark loudly if anyone tried to break in. They both sleep with me so it makes me feel safer.

I'm extremely independant, so it works well for me.

Although I manage I still find staying organised difficult. I can organise quite well until I become overwhelmed and loose momentum. The trouble is I do the same thing here and end up over organising and generating elaborate step by step obsessive procudures that require more energy to maintain than the actual tasks. I can spend a great deal of time creating these well engineered systems that are usually short lived. I try to simplify everthing to routine specific steps and reduce what I have to physically do. So I can well truly relate to this. I also struggle with shopping, meeting and having to deal with people, servicing the car, eating well and so on but have learnt to cope.

I believe life skills are nearly second nature for NTs, and almost intuitive. We all face the same challenges in life but those of us with AS experience a fare higher difficulty level. It would have been nice to have been better equiped earlyer, particularly in AS specific coping stratagies.

I would like to hear from others who havn't made it out there on thier own yet. What holds you back the most. Do you think a support/training service could help you on your way if you could learn certain skills. Could this also help those who are independent improve thier lives. I am not at all suggesting dictatorial intrusions on personal life, but more dedicated training and addvice.

I've been living independently for nearly 5 months now. I think I'm doing pretty well so far. I think it helps that I get almost all of my money at the beginning of each semester in the form of a scholarship refund. That way I can pay my bills the day I get them online and I can pay several month's rent in advance. I have trouble getting myself to clean and tidy if there is no motivation other than it needs to get done. I have my 2 best friends over for dinner usually about once a week, so I have to keep the living room, kitchen, and bathroom clean. But no one but me and my dog ever sees my bedroom so it's usually a mess, until my mom came over yesterday and made me sort through all my papers and stuff. It's still messy, but now I can actually walk in there other than the path to the bathroom. I've been meaning to do it for awhile, but I just always had something better to do. I hate doing dishes, I can't make myself do it until I either run out of dishes or counter space. I don't shower unless I'm going somewhere or someone is coming over, I'm assuming other people shower for the sake of being clean, I don't really know. I would forget to feed and let my dog outside if she didn't remind me. I just need a schedule, but that's hard to do when my class schedule changes every semester. Before the winter break I had a routine of when to do dishes, when to feed myself, when to let the dog out. . . Now it's just whenever I think of it. And with so much free time, I'm spending most of it researching my special interests on the internet, so I don't stop and think about much else. Two more weeks then I can start solidifying my new schedule.

Yep, the debit is what I do for everything within the past 9 years. A little uncomfortable , but the convenience outwieghs the alternative.

I've run without car insurance by forgetting to pay; once I drove for 5 months with the stamped envelope in the car's glovebox-I just happened to find it one day- (in the U.S., this is a financial catastrope waiting to happen).