If you need help with independent living, what kind(s) of help do you need?

[the_tortoise]

If you feel you don't need or would not significantly benefit from any help at all**, then there is no poll option for you and I apologize for that.

If I could have added more poll options, there would have been one for "I don't need any help with independent living"....but I could not. (I would have added several more poll options if I could have, so I apologize if you have support needs that do not appear here -- if you feel comfortable sharing them in a post I hope you will.)

Please note that for the one about personal care tasks, I mean to ask if you need help with any of the things listed in brackets (or any similar things) -- not if you need help with all of them. (Sorry that is not clear -- I can't change to be more clear now that people have voted.)

**Some autistic people need help that is not available. They manage to stay alive and be some degree of "okay" but face constant struggle and hardship that seriously diminishes their quality of life and their ability to participate in the world. They need help to have good quality of life and live up to their potential, even if they do not need help to keep themselves alive (and even if they excel in most areas of independent living and only face significant difficulty in one or two)....there are different levels of need. The fact that their needs may not be recognized or cannot be met by governments, non-profit organizations, friends, or families does not mean those needs do not exist.

By "participation in the world" I mean things like having a job, going to school, being able to access activities and services in your home or community, and socializing with other people.

I know that need for support changes in different contexts and at different points in life, so if you only need help sometimes/in certain contexts and it's something that happens on and off (versus being a one-time, anomolous thing that will almost certainly never happen a second time), then I would count that as needing help for the purposes of this poll.

 

[TheFreeCat]

Great poll! That last, I would separate. For instance, no trouble with self care except eating.

I think a lot of us are so beat down that the lines are blurred. What started out as maybe a single need has, for lack of care and bullying ,etc, exploded into a mass of something, now just called, "me."

So many of us are complicated specifically because we are smart enough to have navigated survival on one level or another, things that would have tanked NTs outright.

So the fact that we are survivors in ways that are off the NT page, what we need may be something way off the NT page.

There is also the last option I wish you could have added, and that is a very deep need many of us have to find a way to left alone and not tampered with anymore.

No more support or false hope, no more trying to pry us out of our thoughts....just enough of the basic amenities to be left alone in peace to live alone, finally, in our heads.

 

[Progster]

I have difficulty with social situtions, with organising chores and doing housework, with coping with doctor's and hospital visits, with using the phone, with managing emotions, especially frustration - I also have anxiety and had depression.

 

[the_tortoise]

Great poll! That last, I would separate. For instance, no trouble with self care except eating.

Thanks for the feedback! Separating the examples in the last one makes a lot of sense -- I wish I could do more poll options.

I should have put slashes in between each option to indicate that it was a list of possible examples for that option -- I didn't mean for it to be asking if you need help with all of them, but if you need help with any of them.

I think a lot of us are so beat down that the lines are blurred. What started out as maybe a single need has, for lack of care and bullying ,etc, exploded into a mass of something, now just called, "me."

So many of us are complicated specifically because we are smart enough to have navigated survival on one level or another, things that would have tanked NTs outright.

So the fact that we are survivors in ways that are off the NT page, what we need may be something way off the NT page.

This a really good, complex point.

The more unmet needs you have and difficulties you face, the less energy you have to cope -- and the more trauma you may experience, which then just adds more things to the piles of unmet needs and things you struggle with.

People who do not struggle in the same ways may have difficulty understanding, and probably would never guess what it is like unless they were presented with a lot of information about it.

There is also the last option I wish you could have added, and that is a very deep need many of us have to find a way to left alone and not tampered with anymore.

No more support or false hope, no more trying to pry us out of our thoughts....just enough of the basic amenities to be left alone in peace to live alone, finally, in our heads.

I would add that if I could.

I have a problem with trusting people to help me rather than harm me/make things worse in their very well-intentioned but misguided efforts to to be helpful. People often misunderstand what the problem is and/or cannot understand how my mind works and so cannot or will not help in ways that are actually helpful.

 

[Pats]

You know, I've spent all my life having to rely on myself for anything and everything and learned to be self sufficient. It's hard for me to realize and admit (even to self) that I'm not as self sufficient as I used to be and not just physically. I do have people in the same house. I have my own space and privacy, but family upstairs who come down not less than twice a day and I feel a security in that. And, though, I haven't fully admitted it, I do count on them for some things. Like now, I need to go somewhere about 20 minutes away and I don't like driving as much as I used to so I ask my daughter in law if she wants to go and let her pick the day so I can just ride with her. Some things are to do with age and physical things, but some just because it's something I struggle with myself.

 

[BraidedPony]

I didn’t realize I needed so much help. Many things are a matter of needing motivation. I know how to cook and I know I’m hungry but to actually make something edible is sometimes too much work. Same thing with cleaning, showers, making phone calls.
I wouldn’t want a home visit though, having anyone in my place makes me very anxious.
But just a phone call once a day to offer encouragement or have suggestions about how to tackle a problem would make a world of difference. Even just to help me figure out exactly what I’m feeling would be great.
Good poll!

 

[Sara3]

Thanks, your poll was helpful. In fact, i will write down my answers.

 

[Pats]

I didn’t realize I needed so much help. Many things are a matter of needing motivation. I know how to cook and I know I’m hungry but to actually make something edible is sometimes too much work. Same thing with cleaning, showers, making phone calls.
I wouldn’t want a home visit though, having anyone in my place makes me very anxious.
But just a phone call once a day to offer encouragement or have suggestions about how to tackle a problem would make a world of difference. Even just to help me figure out exactly what I’m feeling would be great.
Good poll!

If you want, I could remind you a couple times a week to shower and make your phone calls and we could encourage and try to motivate each other to do these things. lol

 

[Gritches]

I find needs assessments so hard to answer because I technically know how to do all those things, I just won't do them if I'm under a lot of stress, which just looks like me being lazy to an outside observer. But really what it is is a psychotic state where I just...unravel, spiral downwards, and eventually do something drastic (like attempting suicide).

So, yes, I've managed to prolong my biological existence up to this point and can probably maintain functioning organs and a pulse if left to my own devises, but one of these days I'm not going to come back from one of those downwards spirals, so yes sir/ma'am I would like some support services please and thank you.

 

[Gritches]

If you want, I could remind you a couple times a week to shower and make your phone calls and we could encourage and try to motivate each other to do these things. lol

Just as an observation, that's a really good idea in general. Aspies helping Aspies, because God knows support services aren't exactly forthcoming.

 

[Fino]

I'm capable of doing all these things, but it requires a lot of medication and a very rigid way of living, and even then it becomes overwhelming every once in a while.

 

[Autistamatic]

I only ticked the emotional support box because that is the main thing I need on a daily basis. Thankfully my wife provides that for me, but I've had my fair share of counselling and depression meds in my years. I also benefit from having her to bounce off to make sense of other people. I've trusted people I shouldn't have too often and she helps keep me straight.
When it comes to practical everyday tasks I manage OK but I'm still better at that with a partner. When I've lived alone or with a housemate I've been known to let things slide.

 

[LadyBird84]

I've needed psychological help in the past, though not at the present, I might need it again in the future.

 

[the_tortoise]

If you want, I could remind you a couple times a week to shower and make your phone calls and we could encourage and try to motivate each other to do these things. lol

I agree with @Gritches, this is a brilliant idea.

I would really like it if I could start up a sort of ad-hoc volunteer support network of autistic adults in my community, where our strengths might compliment each other and we could offer each other peer support beyond just sitting in a room once per week/2 weeks/month for an hour or so and talking about stuff (not that this cannot be helpful, but it's not the same).

In addition to the possbility of reminders and encouragement that @Pats offered to @BraidedPony, perhaps: If some people could drive, they might offer rides to help people who can't drive to get places in exchange for gas money or something; People might accompany each other to places to help with difficulty navigating public transit and staying calm in the sensory onslaught of the world; People who were good at organizing could maybe help those who were not to make schedules or sift through complex decision making; Someone who was good at cooking/making food or cleaning might help another who struggled with that task once a week -- or people with equal levels of difficulty might just do these things together so that the task didn't seem so big and the difficulty so lonely; Maybe people could go with each other to appointments for general support or to offer assistance communicating with service providers (not just medical/mental health people but all kinds of services).

I don't know how workable it would be to do something like that (for example there are safety considerations and all kinds of practical limitations that I'm sure would come up) -- and you could end up with a group of people who all have the same difficulties and can't offer much more than moral support and encouragement to each other, but that alone can be really valuable.

 

[Pats]

I agree with @Gritches, this is a brilliant idea.

I would really like it if I could start up a sort of ad-hoc volunteer support network of autistic adults in my community, where our strengths might compliment each other and we could offer each other peer support beyond just sitting in a room once per week/2 weeks/month for an hour or so and talking about stuff (not that this cannot be helpful, but it's not the same).

In addition to the possbility of reminders and encouragement that @Pats offered to @BraidedPony, perhaps: If some people could drive, they might offer rides to help people who can't drive to get places in exchange for gas money or something; People might accompany each other to places to help with difficulty navigating public transit and staying calm in the sensory onslaught of the world; People who were good at organizing could maybe help those who were not to make schedules or sift through complex decision making; Someone who was good at cooking/making food or cleaning might help another who struggled with that task once a week -- or people with equal levels of difficulty might just do these things together so that the task didn't seem so big and the difficulty so lonely; Maybe people could go with each other to appointments for general support or to offer assistance communicating with service providers (not just medical/mental health people but all kinds of services).

I don't know how workable it would be to do something like that (for example there are safety considerations and all kinds of practical limitations that I'm sure would come up) -- and you could end up with a group of people who all have the same difficulties and can't offer much more than moral support and encouragement to each other, but that alone can be really valuable.

And adding the difficulty of not knowing and being uncomfortable with whoever is helping you. That's probably the main reason I usually say no to wanting assistance (wanting and needing 2 different things).

My mom had an RN from hospice come a couple times a week and an aide come 3 times a week to help her with bathing and self care stuff. I got so tickled once when my mom said the aide's name is Melissa but everyone else calls her Lucille. (Her name was Lucille).

 

[the_tortoise]

And adding the difficulty of not knowing and being uncomfortable with whoever is helping you. That's probably the main reason I usually say no to wanting assistance (wanting and needing 2 different things).

Yeah, that would be a big sticking point for me for some things as well -- or at least it could be.

I'm not sure how you get around that -- for myself it might help if there was a social or "getting to know each other" component to becoming part of the peer support network; Or some kind of standard process, sort of like a casual interview, where individuals offering and asking for help could talk to each other or meet up for coffee to suss out the situation with the other person before agreeing to help/accept help -- to see if trust and whatever level of personal comfort needed would be possible.

 

[Autistamatic]

Yeah, that would be a big sticking point for me for some things as well -- or at least it could be.

I'm not sure how you get around that -- for myself it might help if there was a social or "getting to know each other" component to becoming part of the peer support network; Or some kind of standard process, sort of like a casual interview, where individuals offering and asking for help could talk to each other or meet up for coffee to suss out the situation with the other person before agreeing to help/accept help -- to see if trust and whatever level of personal comfort needed would be possible.

Sounds to me like a localised, regional version of a forum like this might be the ideal place to start. Maybe something that could be done with the cooperation of local government?
If I was going to try organising something like that in the UK then the city or county council would be my first port of call. If they could donate some server space on their website then it would just take a couple of volunteers to set up a forum or message board with open source software to get the ball rolling.

 

[Mr Allen]

I need help with almost everything.

I have to use a bath seat to have a bath in a morning because I can't climb in and out of the bath by other means, and my Bathroom doesn't have the space for one of those walk in Baths.

I'm also still single in my early 40s, nearest thing I ever went on to a proper date was taking my ex from school to the Odeon in 1989 aged 13, unless you count taking female carers to the movies.

 

[the_tortoise]

Sounds to me like a localised, regional version of a forum like this might be the ideal place to start. Maybe something that could be done with the cooperation of local government?
If I was going to try organising something like that in the UK then the city or county council would be my first port of call. If they could donate some server space on their website then it would just take a couple of volunteers to set up a forum or message board with open source software to get the ball rolling.

I am going to talk to my counsellor about it. Perhaps they can run the idea past other autistic adult clients and ask people to spread the word, see if anybody else around here would have any interest in such a thing.

If other people are interested, maybe they would also be intersted in getting together to develop the idea and approach organizations that might be in a position to offer any necessary resources to get it off the ground.

I am quite certain I could not organize something like this by myself. Developing a plan and putting ideas into practice is a lot harder than thinking about them.

 

[Autistamatic]

I am going to talk to my counsellor about it. Perhaps they can run the idea past other autistic adult clients and ask people to spread the word, see if anybody else around here would have any interest in such a thing.

If other people are interested, maybe they would also be intersted in getting together to develop the idea and approach organizations that might be in a position to offer any necessary resources to get it off the ground.

I am quite certain I could not organize something like this by myself. Developing a plan and putting ideas into practice is a lot harder than thinking about them.

If you decide to give it a go I'm sure there will be plenty of people here from all over the world who would offer you knowledge and/or skills to help you get it off the ground. The internet opens plenty of opportunities to share information and media, even if we can't necessarily help in a hands on fashion