Independent living difficulties

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Yep, I spot touched up, and hired a cleaning ladie to come in twice a month-(when I was bachelor).


Same. my wife now cooks. I have about as much interest in cooking as cleaning.


Been there for 35 years as a bachelor.


Unfortunately, this seems pretty common with AS.



Yep. My best wishes.

This is me.
I also have a phobia of employment - not of the work involved, but of being employed per se. I've tried it previously, and both attempts were rather traumatic.

A secretary for me would be a gift from the proverbial Heavens.

Also, I HATE cleaning and doing dishes - it's ridiculously emotionally draining - I'm addicted to the Internet and I'm forever leaving for appointments, classes etc. 20 minutes later than I should.

Sometimes the magic happens, and then it's just a matter of allowing it and gently guiding it. Anbuend, you are very welcome, and again thank you for your very good post!

Employment has been and still is one of my greatest difficulties. I had spent a number of years at one stage out of work paralyzed by fear of past work place bullying. I have experienced bullying by NTs in ever one of the jobs I have had, including my current one. The work itself I don't mind, its the damage left by bullying that can stay with you for years.

So is employment one of the big obctacles for aspies out there trying to live independently, I know it was for me.

I'm pretty well organised but I fear that if I start to live more independently all that will fall apart.
I'm on disability but I have a fear of my money running out.
I have a phobia about working too. I never get a job when I apply anyway.
I'm far too unmotivated to volunteer. I did that before but I'm a practical person and will only work if there's a point to it.

All this talk of bills and cooking is scary to me.

I understand where you're coming from. My wife runs my whole life to a certain degree. I have no idea how a household works. Cannot balance a checkbook either. Never have been able to. My wife helped me get into the current job which I have now where they're very nice to me. If not for my wife I'd still be living in my parents basement.......where I did live til I was about 32.

Yes, big issue for me, too. I ask myself why it bothers me so much. Well, someone cheats, they try and deliberatively harm me, they abandon the professed goals of the organization . . . Why shouldn't it bother me?!

And why aren't more people bothered by it?

And really, some pretty bad things in the world occur because people and institutions are not skilled in responding to this kind of bullying behavior.

I'm back living with my parents in my mid to late 40s after living many, many years on my own, although with considerable financial help from them.

Wish more good jobs were readily available, as they would be in a healthy society/economic system. Well, that is not our current situation.

I do good living on my own. But it's cooking I have troubles with. I can cook things like eggs or noodles or pancakes or waffles or cake, or cookies. but I have a hard time understanding the cooking instructions. Then I was given some simple recipes and started cooking and now I am not motivated too.

Eating, I have no idea what to eat and I don't even know I am hungry until I am starving. I haven't felt hungry since I have had my baby and I am so happy to find out it seems normal to not have an appetite postpartum and be struggling to remember to eat but I know I have had this before I was even pregnant. I get so into what I am doing, I am too lazy to get up to eat, even if I am starving. Then my husband would have to come out and cook me something. I just buy the same stuff because it's easier than going being in the store for two hours deciding on what to buy. Same as standing in the kitchen for like a half hour deciding on what to eat. I also lose track of time so

Job hunting. I could never find a job easily and I just figure it's due to lack of work experience I have and I never felt motivated to go volunteer at places. Also the fact tons of places want people who have experience in the same work field. Now I blame it on the economy since lot of people are struggling to get a job. But I think places that are hiring would hire someone and I never get called for an interview. Now I have nothing to worry about because I got a job through a company that is for people with disabilities.

Phone calls. I keep forgetting to make important ones or it takes me forever to finally make one. I also get nervous and don't always know how to handle things or what to say. But my husband comes to the rescue.

Shyness, I get so nervous calling people or talking to people. I don't know how I am going to do this when my baby gets older and goes to school. I know I am going to have to be calling his school, talking to his teachers and all or principal. Or talking to other parents. I will just play it by ear.

Stress and anxiety. When I have too many things to do I get so stressed out about it I shut down. Another reason why I get lazy so I procrastinate. I also find it stressful to get something I need like new bras or new pair of shoes. My aunt had to take me to get nursing bras because I didn't know how to do it. I couldn't figure out what size to get and I found it too stressful. It's about decisions and I hate making them. I just don't have the patience. It takes me forever to finally get something I needed or to get something done. I don't know why I make simple things so difficult.

Some of what people are saying reminds me of a friend who has most of the same difficulties I do (minus the severity of the movement disorder, and she can hold a job although not without great difficulty). People see us very differently though and part of that is I get services through the state while her boyfriend helps her. The downside of that arrangement is I know someone else whose husband did everything... until he left her. Now she's struggling with trying to get services from the state while also struggling with several serious health problems.

Yes, I do agree with you. Todays economic situation does indeed make it tougher to be on your own. My wife and I are lucky to have nice paying jobs though she earns double what I do. Two incomes are better than one especially if you don't have kids which we don't.

How does this employment situation compare to other jobs you may have had in the past.

Have you had any bullying issues there, and would you recomend this type of employment situation to other aspies struggling to find work.

I don't know whether I qualify as out on my own or not. I live in my own apartment but I technically count as being in residential care because of the kind of services I get, and I do much less for myself than most people living with their parents or in group homes. What i have is more choice than many. I guess I'll answer as if I'm not.



Simply lacking the abilities to do the peculiar brand of interdependence that America calls independence. There is no way I could in our current system hold a job, manage a household, shop, take care of myself, etc. in all the expected ways. (I say in our current system because we have a narrow and money-fueled idea of what a job is. There are societies where there is no sharp division between the work done by someone who could get paid for doing it in America, and the everyday work that everyone does for each other that goes unpaid in America. Everyone is capable of the second kind, not everyone is capable of the first.



No. The trouble I have goes beyond learning skills. Implementing them through combining knowledge, memory, movement, perception, and reasoning is the part I can't do and that no amount of practice can overcome. I've been through many skills training programs over the years and they got me as far as they would get anyone else who can't combine all those things on command.

(Flashback to my early twenties hearing a sing song voice "See THIS? THIS is BREAD. See THIS? This is an OV-EN. Now watch carefully, I'm going to PUT the BREAD, IN the OVEN." (several minutes pass in which she scuttles back and forth to the oven to look inside, culminating in a final peek in which her body language changes all over) "Oh-KAAAY! Now we are going to go check if the bread is done, come on!" (we go to the oven, she opens it, she does an incredibly overdone gasp of surprise) "Oh LOOK AT THAT, it's DONE! Now pick the toast up care-ful-ly..." (At which point I stick my hand in there without a towel or mitt just to get back at her for the last ten minutes of my life.) "NO NO NO USE A TOWEL! USE THIS USE THIS OH NO" (Condescending staff never, ever get it when clients do stuff just to get a little freedom back. This particular one does a little dance.) "YAY, you made toast!" (er... no I didn't, you did...))

Not all of it was that awful. Although the showering in front of a lady with a stopwatch and a clipboard in my teens was even worse. But it was all equally ineffective.

There's a book I read by a guy who works in the DD field who pointed out that after people prove well into adulthood that they aren't learning something, period, then maybe it's time to quit humiliating them and start just doing it for them. Unless they're somehow motivated to learn it for their own reasons and want to put in all that time. He described attending a talk about the rate of depression and loneliness in adults with DDs and his first thought was something like (in terms of how the system sees our lives), "They may be living lives of horrible isolation and loneliness, but by God, their beds are made, they know how to set tables, and their shirts are neatly folded in their drawers." He suggested that it might be a little better to teach skills that will actually improve someone's quality of life.

Of course for people who can learn the skills to live "independently", or even the skills to manage caregivers (unfortunately I'm no good at that either, given it's a social skill and an organizational skill packed into one ), those are really important skills to have. But too many skills training programs either insist on teaching people over and over who've proved they can't learn something, or else they teach pointless cosmetic skills like how to make your bed perfectly that even most nondisabled people don't bother with (basically holding people with fewer skills to a higher standard, WTF). Or else they're staffed by clones of the Toast Lady. (And please nobody tell me she treated me "like I was ret*d". "ret*d" people don't like being treated like that either and are fully capable of noticing the dripping condescension. And of doing those little things to assert their freedom while staff assume they don't know any better.)

My other problem with skill training (which many but not all autistic people share) is that even when I'm fully capable of learning something I don't learn it by being trained. Typically I learn it by sufficient exposure followed by a long wait where I do nothing of the sort followed by a single exposure to the skill again where I try it and either do it near perfectly, or have mastered enough of it to be able to practice. Typically there is no intent in any of this. So there's no real way to make a program out of it. Even that first part has too many random elements. And sometimes trying to learn or someone else trying to teach shuts down the process and makes it impossible. So I'm just a bad fit for most programs.

One thing I desperately want to learn is safety skills. It would have to be rote drills over and over until I was practiced at always reacting the same way to the same situation. Such as a stranger knocking on my door and trying to come indoors, or a stranger trying to lure me into a car (if you're visibly DD including autistic you're not exempt from that trick when you hit adulthood, I learned the hard way from a would-be rapist), etc. Because I dont see any other way I could safely learn. I've just been in many bad situations and reacted the dangerous way or else only reacted the safe way by a mistake coincidence type thing. I am passive, naive, and often have a blank mind when I should have been remembering something (as well as having trouble acting on such memories when I have them) and I'm just asking for trouble.

There are other things in my capacity to learn that could be useful to learn even if I'll never be "independent". But I don't know what all of them are. I just come across my lack of them now and then.

I just got my own place, and I think that my landlady can tell that I am "different"
Not necc. a bad thing I guess..
I am hoping it will do a lot for my mental health..but I still need to work on positive habits.

I love this sentence (actually, I love what it means) Even the most independent man or women has a network of people around them without which they would be unable to sustain their so called independence. Independence is an illusion. We all need each other.

I agree that being taught skills is useless for me and it totally fails to look at WHY I do not do things. I cannot handle the smells and noise associated with many cleaning tasks, I am not able to be inside when the vacuum is on, and I cannot handle the touch of most foods in my hands. I had the toast lady as a vacuum man and he spent the whole time showing me where the "on" button is on the vacuum. I am not ret*d and even most severely intellectually disabled people are pretty well competent enough to work out where the 'on' button is after a while. Teching me how to chop up a vegetable is of no use if I am not willing to touch it. When I space out so often I leave stoves and oven's on and ending up setting the place on fire that is useless too. In some ways I am incredibly competent, but in others I am totally useless, but the system focusses on teaching things when comon sense should say that by this age, we really just need someone to come in and do it for us. I now have some minimal help, 3.5 hours per week to help with cooking and cleaning, and I am on a waiting list for a package that will give me more support hours. I do need support to be able to go out to new places, to go shopping, to be in crowds, to organise things etc. At the moment I am barely keeping myself alive, but it is enough to just keep me going. It has however taken me 18 years of constantly being placed in different systems when I failed to look after myself, as all they could see were my intellectual skills and could not see the practical day to day problems that I had. I was placed in homeless services when I got evicted for not keeping the place clean enough and when I failed to do what they needed I was handed across to the mental health system that decided that prozac and respiradel and a couple of doses of forced ECT were going to teach me the skills I needed. They did finally decide to give me some training, but I was blamed for not trying hard enough to learn the required skills. To be honest to now have the support that I have is a relief. I finally have people who are accepting me for who I am, what I can and what I cannot do.

Holding down a job is incredibly scary for me. I will get lifetime on the job support provided by the governement here and I am thankful for that. I am beginning to work with a specialist disability employment service provider, after having huge problems with some of the ones I tried to work with in the past who simply tried to fix me and could not accept that someone who was intellectually gifted, can be profoundly disabled in other ways. I am now doing voluntary work, but I could not do that if it were not for the organisation that I am doing it with, but that has allowed the employment service working with me, to know the support I will need the workplace I will need. Given the perfect place, etc then I could work but we don't expect that to be found easily.

Given a great combination of supports that have finally fallen into place I am beginning to find ways to live some form of life and to believe that I will be able to have a job eventually. Sure I will never be "normal", I will never be totally independent, etc, but I am able to live alone with support and to do some type of work, and that is really reassuring for me.