Independence

It has taken me a long time to accept I can’t live independently. All kinds of people manage it. I’m educated, literate, numerate and intelligent — I hate false modesty ;) — with no physical disabilities. So it ought to be easy, right?

I wish! Don’t get me wrong; I can function for days, even weeks at a time with no visible problems. Until things catch up with me. But when they do catch up with me — and they always do — I find I’ve ended up in this big pit of trouble. Again.

Two things let me down. First is my woeful lack of organizational ability, classic executive dysfunction which means I find it so difficult to plan, to track what I have done and to respond to changing circumstances. Second is my poor social skills which mean I don’t have the people around me to provide support when I need it.

What does this mean in practical terms? Taking executive dysfunction first, it means:

  • I don’t get around to tasks like laundry, cleaning or paying bills. I might be in the middle of something else when I remember about them, but can’t task-switch. By the time I’ve finished whatever I was doing I’ve forgotten again and they don’t get done.
  • When I do get around to them the backlog can be so large as to be intimidating. I perseverate and procrastinate as I attempt to force my mind to encompass the whole of the job in front of me instead of tackling it piecemeal and making some progress.
  • I pay bills twice or not at all because I can’t remember whether I did it already this month.

I know I have these problems. I would like to find ways to cope with and work around my deficits. Because recognizing that a problem exists is only the first step. To do something about it requires support, and that’s where I get bitten by the social communication deficits.

  • I’m generally OK, around level 1 according to DSM V. But this doesn’t mean that I don’t have problems, that I can manage without any help.
  • I can feel comfortable in the company of a number of people I know socially. But I don’t form strong connexions. If I needed, say, somewhere to stay the night, I wouldn’t have anybody I feel close enough to that I could ask.
  • I don’t feel comfortable asking for help. No, it’s more than that: asking for help involves being open, demonstrating vulnerability — even weakness. I fear the consequences: I catastrophize. I’ve been bullied in the past and that has created deep inhibitions. Without feeling a strong connexion to a person there is no way I can feel safe enough, trusting enough, to approach them.

I have lived on my own three times: when I went away to university, when I moved away from home to start my first job, and after the breakup of my first marriage. Each time I ran into the same problems: mounting debts because I mismanaged my finances; dirty, untidy living quarters because I didn’t manage to keep up with cleaning; decline in personal hygiene and dress because I didn’t manage to do my laundry regularly; decline in health and fitness because of poor diet when I relied on take out food too often.

These past 12 years with my wife have been a welcome escape from my struggles. In a number of ways she has been my carer as well as my spouse and I have come to depend on her to organize my life. But I have come to depend on her to organize my life. We both know that she is becoming less able to manage these days; her health is declining and she is becoming infirm. So we are starting now to develop coping strategies for me so I will become more independent. I don’t know if full independence is an achievable goal but it’s something to aim for. At the very least it will show the areas where I really do need support.

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18 thoughts on “Independence

  1. I have been living on my own for 15 years now, and I managed enough to not get into big trouble. But the past years I had been collapsing into depression and it didn’t work anymore. I had to rebuild a lot (keeping my house clean, myself clean, paying bills, keeping things organised admin wise), which was a lot more difficult than I would’ve thought (for the reasons mentioned in your 1st paragraph). And now it remains more difficult than I remembered it being, before.

    Fortunately, in the NL, once you have a diagnosis and manage to formulate the request in the right way, you can get support, a ‘home coach’. It’s for all sorts of people with disabilities, helping them with practical things. She helps me think things through, sometimes concretely helps me with things like forms or institutions, checks up on me, on things we agreed are a problem area, etc. Is that possible where you live?

    From what I’ve learned so far, it really helps me to build all kinds of structure in my life. Scheduling things on fixed days, week schedule, grocery lists, task lists, my house is full of them.
    For keeping myself clean I have lists in my bathroom: morning routine, evening routine, shower routine.
    For my house I have a cleaning roster: every sunday morning I check it out, it tells me what I need to do this week(end), broken down in small tasks (highlighted the most important ones for ‘lazy days’) and the best order for them. I copied them from a friend’s student dorm, and have been slowly adapting it to work better for me. If I don’t do it this week, it’s ok, I can do it next week. At least I don’t go months without doing any dishes anymore.
    I try to do ‘administration’ every friday evening. The rest of the week I just chuck mail in a tray, which I go through on friday: archiving what can be archived, filling in what needs to be filled in.
    My fridge is a white board for groceries, anything I think I might need goes on there, prioritized from ‘have to buy today/tomorrow’ through ‘should get sometime soon’ to ‘might try some time’.
    I kep track of every interaction (including to-do’s) with institutions / therapists / other parts of my life by noting it all in my little book.

    Sometimes I go nuts from all the lists, but at least it’s a way of keeping things vaguely organized. This means I can pick up where I left off, if one week I haven’t done anything. It seems to work so far.
    Maybe some of these ideas can work for you as well?

    Also, aspiemusings had a great blog on executive function problems, with tips: http://musingsofanaspie.com/2013/08/02/procrastination-or-executive-function-fail/

    • I sometimes feel almost as if I have an institutionalized mindset because I’ve been dependent on somebody nearly all my life. As I said, learning the skills is my priority right now to identify the address where I may need help. Finding out what services may exist where I live can wait a little while, and I do know where to start: my GP and the National Autistic Society. I have discovered that adult services are limited, but not totally absent.

    • I meant to reply in more detail but was short of time yesterday: sorry.

      The home coach sounds very helpful. I know that similar services do exist here in the UK because disabled people I know receive such assistance. I don’t know about the cost, but I believe it is not prohibitive (and can be subsidized for people who receive certain social security benefits).

      Building routines can work for me, but there’s a bit of a Catch-22 in that I don’t need to have these routines as long as somebody else (my wife) is managing things for me, but as long as that is the case I won’t develop the habits. What my wife and I are working on is for her to take a less active role, but in a controlled way, to allow me to become used to taking care of certain things on a regular basis without becoming stressed by taking on everything at once.

      I had seen aspiemusings’ blog that you linked: yes, it was a great description of the problems.

      • It’s great that you can gradually take on things this way, and develop at least some habits and routines. Your wife can help you develop them and stick to them, and support you when needed. For me, the home coach was a great help in establishing all the routines to begin with. Maybe you can ‘document’ some of the routines, to help you on days that maybe your wife has to be in the hospital or something like that. (I don’t want to assume anything about your wife’s illness)

        Yeah, that catch-22 trips me up sometimes as well.
        For instance, I have a list of foods I like / always work for me, for those days I am stressed and have trouble eating / thinking of what food to get. I don’t build up any routine in consulting the list, because most days I plan things well and I can rely on that. Therefor, when I am stressed and need the list, I don’t think of it. I could put the list on the wall to help me think of it, but then it becomes part of the wall. I won’t see it anymore. Difficult one.
        But it’s a good thing I have the list ready anyway. Sometimes I do think of it :)

  2. I’ve been living independently off and on throughout my adult life, but it’s only been in the last two years that I’m getting the hang of it. A little bit. To the point where I usually manage to do laundry before I run out of clean clothes. Usually.

    Actually, my long-distance partner just pointed out to me that I’m still failing quite miserably, even though he partly blames himself for not being able to support me enough. Painful to hear, but useful and necessary information, especially with the second part of my diagnosis coming up.

    • Sounds like you’re managing well: much better than I ever did!

      Funny how some things escape our notice until somebody points them out. But as you say it’s useful to be made aware.

      All the best for part 2! :)

    • I have *got* to stop rushing to respond to comments: I don’t put my thoughts together properly and it comes across as insensitive.

      I’m impressed by anybody on the spectrum who manages to live independently for an extended period — whatever the failings along the way — without it becoming a complete disaster because my own experience has been so negative. I think my first response gave the impression that I was missing or ignoring the fact that you *do* experience problems to varying degrees from day to day, and I *know* how it can hurt to realize that you’re failing, especially when you make such an effort to succeed.

      • Honestly, it’s OK. It did feel a bit like “oh you’re doing alright then” when I’m feeling the exact opposite, but then I figured I’m just as likely to say the same thing to someone else. Lack of filter. So yes, autism is a perfect excuse in this case. :P

        And in case that also came across the wrong way, I just want to say that I know what it’s like to say things that come across the wrong way. Reading back my comment, I didn’t really acknowledge the problems you have with this either. And it’s such a huge thing.

        The problems you describe are so recognisable. When I moved from my first student digs to my second student digs, my mother spent a couple of hours vacuuming all the mouse droppings from the carpet and kitchen cabinets and behind the sofa and in the wardrobe. I wanted to die from embarrassment.

        I read somewhere that living independently doesn’t have to mean you need to be self-sufficient. I think I like that approach. But I’m still having trouble translating that into “it’s OK to ask for help when I can’t cope”. It still feels like a massive failure. And I don’t deal well with failure.

        • I thought it was ironic that having been so focused on validation recently I managed to fail so badly with that comment. Thank you for being understanding — I was beating myself up over it. :(

          Talking about moving out… I helped a couple of NT friends move out of their apartment recently, and the mother of one of them also spent ages vacuuming, so that’s *definitely* not just an autistic thing. :D (The brother of one also spent a couple of days there afterwards filling screw holes in the walls and touching up the paintwork.)

          That’s a very important point about independent not being the same as self-sufficient. It is definitely not failure to recognize when you need help and to ask somebody. It’s just like asking for assistance to lift something too heavy for one. Or so I keep telling myself… Who knows, I might even end up believing it ;) Because, yes, I know what it feels like to face failure and to be seen as failing: still inspires great fear and guilt in me and influences my behavior.

          • Oh yes, the vacuuming I was OK with (because my mum always starts cleaning the moment she gets to my house, ha!), it was the mouse droppings everywhere that made me cringe.

            Beating yourself up: habit I need to learn to overcome myself as well. I beat myself up harder than anyone else could. I think you and I both deserve a hug for working through this. ;)

        • “living independently doesn’t have to mean you need to be self-sufficient”
          Yes, that. But it’s still difficult, not only in the sense that it feels like a failure, but also: identifying what you need help with, BEFORE it leads to actual problems. Like, realizing you need help with your finances, before the debt collector is on your doorstep.

  3. Good description. I’m like that also, to an extent. My OCD keeps me from letting things get too messy, I think, and I try to automate all my recurring bills so they just come out of my bank account and all I have to do is make sure there’s enough money in it. I am such a number head I don’t have much trouble with that.

    But when I lived on my own at college (with a roommate but he was usually sleeping or somewhere else), it was pretty bad. I had the cafeteria to feed me so I wasn’t totally on my own, but I still didn’t eat well. Some days I would forget to eat, sometimes I would be so stressed that I’d eat too much and feel sick. I was pretty badly depressed and terrified of going anywhere, so I spent all my free time in my room and never made any friends.

    I can’t plan, at least not how “normal” people want me to. I just want to live one day at a time because when I try to think ahead, I get paralyzed by how many possible futures there are. I can’t plan for them all and planning for just one seems pointless when the one that actually happens is so rarely the one I think is most likely to happen.

    • I had serious problems with stress and depression at university — but wasn’t very aware of it at the time because of my problems identifying my emotions. That was definitely an obstacle to coping because it makes my (already poor) executive functioning even worse.

      I don’t plan ahead in any detail because it’s so hard to cope with those plans getting upset if things change.

  4. Executive dysfunction is so tough. It makes such simple things seem overwhelming. I’m in awe of people who manage to juggle so many things and keep everything organized. I’ve been making a real effort in the last year or so to improve in this area, and it is going ok so far. I find it really helps me to cut down aggressively on clutter (I usually go around the house and do some de-cluttering about once a month) and have a place for everything so I don’t lose things (which I’m notorious for). I’m also big on lists-I make to-do lists, menu plans and grocery lists, lists of upcoming events and appointments, etc. and I find that helps me too. I have a file folder for all of our important documents and I make sure they go in there as soon as we get them. I try to break things down into the smallest possible task-if I’m organizing the house, for instance, I’ll start with a single shelf in the closet. My biggest weakness is absentmindedness-not with the really big things, but I find it hard to remember to check if I’ve still got my wallet with me when I leave a store, or to hang my keys up when I get home, because I just don’t think of it. So I’m still working on that.

    It’s tough to not have the support system in place. My husband and I are so fortunate to have supportive families and a close-knit church-things would be much harder without them. When you think about it, people who live independently actually have a lot of help from family and friends (a lot of young people I know get help with things like tuition, child care, even down payments), so there’s definitely no shame in needing some additional support. No one should have to go it alone.

    • People who can do this amaze me too — it’s like having a super power.

      Lists are awesome but absentmindedness is the killer — I need reminders to look at my reminders :P The number of times I’ve gone into a room for something and stood there thinking “What did I come in here for?”. Even if it’s only the next room!

  5. I approach life from the opposite polarity when it comes to organising; I love organising on the one hand, but I am also compelled to do so on the other hand. The latter is to be sure everything is completely predictable; I plan every last move, as well as the time it will take. If I don’t do this, I feel completely out of control. I simply cannot handle unpredictability. I need to prepare myself in every way possible.
    Two problems: things don’t always work out as planned, which unsettles me big time, and, this has become exhausting!
    When I got married, I did everything; I NEEDED to be the one that did everything. As I worked on myself, I learned to let go some. Now I hardly do anything outside the house because it has all become just too much.
    How times change!

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